This is an archive of the blog used during John's double lung transplant
Blog from 2004 thru 2006:
Wednesday, April 20, 2004 (10:29 am)
It has been 36 hours since I received the news. It seems so unreal.
John told me at school, on my break, and freaked me out so much I had to leave with him. It seems the lung doctor says he probably has IPF.
HE"S ONLY 40!
IPF seems to be a pulmonary fibrosis that they don't know why he has.
Let's start at the beginning.
John and I met 10 years ago and have been together ever since. We are soul mates. I know what he's thinking and he knows what I'm thinking. We finish each others sentences. We hardly ever fight, and when we do, neither one of us can function properly. We belong together. Forever.
John had a heart attack in January of 2004. It was not unexpected as his father has heart disease and his grandfathers both died of it. But I wasn't really worried, and he received a stint and he has heart disease, and is on all sorts of medications. He had quit smoking last year and hasn't had anything to drink in 7 years and we have been working out for an hour a day for 5 days a week, for the last 6 months. Relatively healthy.
There was something strange when he was in the hospital they thought he was in there for pneumonia and not a heart attack.....So they gave him antibiotics. Of course he was having a heart attack and didn't have pneumonia. A lung specialist from Washington University came and did a couple of tests and told John that he had scar tissue in his lungs, and further tests would be needed. Well he received those tests on Monday. The diagnosis was that he probably has IPF, but the doctor wants to do a biopsy to be sure, because there has been no change since January and there is a small chance that it may be just scar tissue. The doctor can't do the biopsy for about 4 months because John is on heart medication and it needs to be coordinated with his heart doctor so he can be off of several of the medications.
IPF is a lung disease that slowly causes death in 4 to 6 year from diagnosis.
So we have to wait until around August to know anything for sure.
Waiting is going to be very difficult. I have of course cried for 24 hours already. I can't even listen to certain music without breaking down. Looking at him or hearing something could make me cry. I am crying for him and for reasons such as this illness is not only terminal, but you slowly suffocate. But I am also crying for me, because I can't be without him. How can I? I keep hearing that song in my head by Michael Bolton. Please let this not be real.
Thursday, April 21, 2004 (10:38 pm)
I have decided to keep this blog for several reasons. The first is john and I can't really tell relatives or friends about his condition because we really don't have a diagnosis that is rock solid. Since we still have hope that it is only scarring of the lungs, we don't want to scare anyone. Of course the two youngest children know, mainly because I couldn't stop crying. We are both still in the shock and awe stage. It doesn't seem real, but if I let myself think about him for more than a few seconds, then I get emotional.
I of course still hope that this is scarring from an incident that happened 12 years ago. It seems that john was having breathing problems and was diagnosed with asthma at 28 years old. He didn't have it before then, and it seems he didn't have it when I met him at 30. Since this seems odd to me, I hope it is the reason they see the scars on his lungs. The doctors are going to try and look at the x-rays from this incident and compare them with recent ones. This could prove to be a long term thing. Pray that it is....
Monday, June 13, 2005 (6:48 pm)
I know I haven't posted here in a long while, but John had been doing so well, with no change.
This is an update letting you all know the status of John's lung disease.
John had his second CAT scan yesterday. This is the update on his lung disease. The CAT scan from yesterday compared to last year, showed a rather large decline in lung space. Where there was black space for oxygen.. now it looks like it's snowing in his lungs. The difference is significant. This explains the continued cough, and slight shortness of breath. The doctor suspects IPF that is progressing rather quickly. Without the lung biopsy they prefer not, and actually will not, treat him for any one lung disease, as the first procedure was inconclusive. He didn't even cough before the first procedure in November. Not he can't stop. John will schedule a lung biopsy, where they will actually cut out a piece of lung, for the beginning of July. Probably for the second week, right after I return from Texas, where I am going for work, for two weeks. He will be in the hospital for up to a week, and off of work for several weeks after that.
If John has the progressive form of IPF, then a new treatment called interferon, may be promising. He will eventually need a lung transplant, as there is no real cure for the disease. Hopefully that is not the case, or at least down the road a bit. Of course your prayers are appreciated, and I will keep you informed.
Cathy
(Note added in 2011-I was opposed to the Lung Biopsy due to the broncoscopy causing in my opinion his lungs to start showing signs of decline. I was pretty certain, in my mind, that if they hadn't touched him his lungs wouldn't have started the auto immune response and that further invasion to his lungs would further increase the response, and since he didn't have a long of lung capacity left they would hasten his decline. which it did.)
(Note added in 2011-I was opposed to the Lung Biopsy due to the broncoscopy causing in my opinion his lungs to start showing signs of decline. I was pretty certain, in my mind, that if they hadn't touched him his lungs wouldn't have started the auto immune response and that further invasion to his lungs would further increase the response, and since he didn't have a long of lung capacity left they would hasten his decline. which it did.)
Thursday, June 16, 2005 (6:50 pm)
John had his breathing test today. They measured the oxygen in his blood. Normally it should be above 90. The higher the better. Last year when taking this test, his heart rate was around 50=60, and his oxygen level was 92-95 while doing the walking test. Today, oxygen was 92 while sitting, and when he started walking.. it went down to 86. They put him on oxygen, and continued. He walked and then dropped to 88 again, so they turned up the oxygen from 2 to 4 and he continued and finished at around 92-95 with the oxygen. His heart rate was between 70-80. The nurse was pleasant, but suggested he not exercise until the doctor called him, hopefully tomorrow, and we suspect the doctor will put him on oxygen. At least while exercising. John is concerned that if/when he goes on oxygen full time, he will not be able to work at Bassler's. We will cross that bridge, so to speak.
Email sent to John at Work by Cathy on 6/17/05 (6:46 am)
Pam, the nurse, called. She is calling the oxygen people. They want you on oxygen, all the time. I explained about your job on the factory floor. She said, that since your levels were 92 while resting.. that maybe you could wear it in(walking in and out), and then take it off, or store it there were you clock in and out. Talk to someone. If you can't store it, I suggest you take your lunch into work with you, as you shouldn't be walking back and forth without the oxygen. they will bring portables, and something to plug into the wall. She is also calling a surgeon who will call us back, and you will have to go see them, and make an appointment. I'll take care of it, when they call, and see if the oxygen people will come in the morning, or hopefully tonight. I can take off for a half a day, so I'm here if they do, to hear everything. I'll keep you informed. Pam just called again.. and you are for scheduled June 29th at 8am in the same office as Castro, to see Dr. Meyers, the surgeon, and you can make the appointment for your surgery. Schedule it anytime after July 9th. She also called BJ health center with the oxygen order. We should hear from them soon. I love you, and I need you.
Cat
12:35pm-
BJ Health is coming to bring oxygen before 7pm tonight. I will go in late to work, so I can find out what's what. Brittany, my lovely 17 year old daughter, has already offered to donate a lung to her old man. Same blood type. With the progression, John doesn't think he will last on a waiting list for a lung transplant. I can't believe I'd consider something like that, but I almost am.
Wednesday, June 21, 2005 (9:16 pm)
This weekend has been stressful, but we survived. John is now on oxygen. He is on 4liters and 5 or 6 to exercise. The man who brought in the oxygen drove up, and John went out to meet him, and the man asked him if the patient was inside. John said "I am the patient", and the man was very surprised because usually someone is already on oxygen at about 2 liters before going to 4. John look healthy. He exercises every day, and is in excellent shape, and his heart rate last year was 48-52 resting. Now it is up to 60+, but this is due to reduced oxygen in the blood, and this puts a strain on the heart. He defiantly doesn't need that. Someone came by on Monday to test the portable oxygen units. John was getting ready to exercise, and had taken off the oxygen to use the tank downstairs, and answered the door. The lady asked if she had the wrong house.
Here is what I notice: When on oxygen the coughing is not as persistent. His color is better. A couple of weeks ago, he was looking very pale.
I am full of questions. Lung transplants aren't done with living donors, unless it's on children. He will have to be evaluated, and put on a list. This is moving so fast.. we thought we had more time. The life expectancy is 6 years, not 2! The doctor said it was too early to think about transplant, but if not now, when? If the progress continues, he's afraid he will not survive the wait on the list.
The weekend was hard, and I thought he was getting depressed, and why wouldn't he? But that would be so very hard for me to watch. I cry so often now, and we just aren't excepting this to easily, and I'm not dealing with it to well yet. Will I ever?
He is waiting for the doctor's office to send back the release form, to send to his job. We then will know if he is on disability. This man is a CCNA, CCNP, A+, Network+, Senior Electronics Tech. He needs to learn, to work, and this is so very sad to see him watching a movie in the middle of the day, in the middle of the week. We go outside, and we even went to the show, but he is not ready to wear oxygen in public. He will wear it in the car, but it stays there, unless I carry it, and he says he'll walk slow. But he starts coughing if to long without it, if he's walking.
We had Chinese this weekend and when we opened our fortune cookies his said, "Today it's up to you to create the peacefulness you long for". He read mine to me and it said, "You are the guiding star of his existence". I cried.
Friday, June 24, 2005 (11:47 am)
I am leaving for Texas on Sunday morning, and not packed. While I'm gone I am going to have my daughter post. I will also try to update here. I wouldn't have signed up for this trip from work, if I had known John would be on oxygen, and home while waiting to see if he will be going on disability or back to work. But I did, and at first I had hoped that John could drive down and see me on my days off, but it's over 17 hours to drive. We sure can't afford to fly him right now. So I will worry about him, but the closer it gets, the more I get excited too. I haven't seen Texas yet, and it is right on the border, so I get to see Mexico. I really wish John was seeing it with me. I get sad when I think like this.
Thursday, July 7, 2005 (5:05 pm)
Well I have to say I'm loving Texas, and it's hot here. The people are friendly, and are making me forget my troubles if only for awhile. I hope I've made some friends, and while I miss John, I'm dreading returning to the real world. Here I can pretend he's fine and just waiting at home for me. I don't hear the coughing much as he's usually just sitting when he's talking to me. His surgery is on Monday the 11 of July, right after I return. the kids are coming home and the doctors say he should only be in the hospital for about three days. We shall see. He is in the process of getting on disability, and waiting for faxes back and forth.
Monday, July 11, 2005 (3:55 pm)
John's surgery was supposed to have been done today, this morning, but they called, and the doctor had a transplant to do. So surgery is put off until Thursday. I had to do some explaining at work, to get to go back and change the days off. But they did it, and are very good about too.
I was surprised when he picked me up at the airport on Saturday, at how he looked. I didn't expect a change, and there was one. He looked a little thinner, and his eyes were a little lighter around them, a bit sunken, red, and he was sort of pale. Last Cat Scan his lung capacity was around 75 to 80%. He is now under 40%. He is having trouble exercising, and has to stop and rest quite often. Going up and down the stairs is hard on him. Even getting up is hard. He starts coughing. The first night I was home, was a bad one, and he coughed all night, very un-restful. I don't know if it was all the excitement or Shanny's little pugs she brought. I told her she will not be able to bring them again, because I don't know. Today some of Josh's and Brit's friends came to clean, dust and vacuum while I worked. John bought them pizza. I wanted all the dust in the house gone.
Saturday, July 16, 2005 (3:56 am)
Well it's 1 a.m., and I have just found time to post. I've been at the hospital for the last two days. The biopsy that was scheduled for Monday was changed to Thursday due to the surgeon doing and emergency lung transplant. It's really good to know that this surgeon is the one who will be doing the transplant. John went into surgery at 11:30 and came out a little after 1:30p.m. He was in recovery till 5pm and I couldn't see him till they brought him up to the after surgery area, where he is now. It's not intensive care, but not a room, because he needs closer watching. He was awake, and very happy due to a morphine drip. I had to leave at 9pm. The surgeon said it looked like IPF and we would have the results next week, and there was no reason not to start testing for the transplant as soon as John is able to.
Today he was eating solid foods, but this morning when I got there, they said his drainage tube had come out and needed reinserted. He was in excellent spirits, as always, and had several visitors, which always makes him happy. It seems he will not be going home tomorrow and is still in the after surgery area. He needed his oxygen bumped up to 8liters, and his levels were staying at around 92-95. Towards this evening though, he started coughing after using his breathing apparatus(used to help prevent pneumonia) and his levels went down to 83-85. They turned up his oxygen to 12 and gave him a hose with a special reservoir area under his nose to collect the oxygen. His levels rose to 95, so they tried turning it back down slowly, but it was at 10-11liters, when I left, and his levels were right around 90. Not great. They are watching him closely and will call if he has any trouble. I didn't want to leave but had to check on the kids, and Josh was by himself, and worried, since I had forgotten my phone. Brit was off getting the Harry Potter book, at the all night wait with her friends, that had been planned for some time. I am off to bed, and back to the hospital in the morning.
Sunday, July 17, 2005 (7:49 am)
I was supposed to work today. Yesterday when I got to the hospital, John was using a breathing mask, with a bag attached, and the canella. His saturation was dropping and they had him on the max for the aftercare area, and decided to move him to ICU where he could get more oxygen if needed, and more importantly, a ventilator, if needed. They didn't call me! And I got there just in time to walk into ICU with them. We didn't want a ventilator, and still don't and that will be the final step. He is now on 25 liters of oxygen, and they believe he has an infection or pneumonia in his left lung. They had removed all tubes, and they air in the right lung seems to be getting smaller and disappearing. So the antibiotics, and steroids should take care of it. We hope so, we pray so, and until then he will remain in ICU. He can't go home on 25 liters of oxygen, and ideally, he will be weaned down. I need to shower, and return to the hospital, and at least I am able to spend the night with him in ICU, as I couldn't in the after surgery care area. Weird I know, but two visits at a time now, around the clock. So even though he doesn't have to, he can have visitors.
Tuesday, July 19, 2005 (6:57 am)
I have tried several times to post this blog, but something keeps getting in the way. First the hospital computers wouldn't cooperate, then my computer wouldn't. Hopefully third time's a charm. I am home to shower, then back to the hospital. John is still in ICU. They had to get a machine with a mask that forces oxygen into the lungs on him, in place of the other mask, and cannula. He hates it, and had a panic/anxiety/claustrophobic attack, so they are now giving him something for that, that helps keep him calm. The machine forces 100% oxygen into his lungs. Every time they switch him he goes up to the higher oxygen ranges, and then it's like his lungs get used to it, and it slowly goes back down. They exchanged it back for the cannula and little mask for a couple of hours last night, and let him eat some clear liquid stuff, but his blood draw, from his arterial line(that took them many tries to get in, and he's completely bruised up from), showed his saturation goes down almost half when not on that other aggressive machine. So they put him on it for the night. He slept pretty good. They wanted to try that again this morning, but his stats dropped to the 70's and they couldn't. So when I left, he was on the machine, and his stats are in the low 90's, and his blood oxygen level is ok. The goal now, is to get him off this machine, and back to after surgery care, where we started. The doctors all say something different. They think it's pneumonia, or infection of the left lung, but the tests aren't very conclusive. The x-rays show IPF to a degree that they can't tell about the infection. Inflammation they are treating with steroids, and he's on a very strong antibiotic, that they have interchanged with a different one, since they can't narrow down the infection. Then they said they don't think he has one. He did better this last day or so(of course the breathing machine helps), and they think they should be able to start weaning oxygen. Yet they haven't been able to. Another doctor comes in and says he probably does have pneumonia, they just can't tell. The lung doctor, not the surgeon, came in yesterday, asking if he's using that little breathing apparatus, that you breath into to keep from getting pneumonia.. and I and it's really the first I've seen of him, and he was upsetting me. How can he use it.. when he's on 100% oxygen and as soon as he takes off the mask, his stats go down to 70 or below? John coughs, and his levels drop. As he stood there John coughed for him, and it took 20 minutes for his oxygen to get back to 90. He's acting like he doesn't have a clue, and I'm not happy with him. If he was the one doing the transplant..it wouldn't get done.
The biopsy showed IPF.. which they suspected. Why did we have to have the biopsy? The lung doctor didn't want to treat John without it. to imperial. I don't know. They talk like they can use more aggressive treatments, due to some inflammation.. yet they are using steroids. I suppose when he gets out of the hospital they will, yet his progression is happening at an alarming rate(for us). I want to scream at them to treat him now, do something now. They lung doctor talked at our last visit before John went on oxygen like it was too soon to discuss transplant.. yet the surgeon says there isn't any reason to wait to start testing, as soon as John' is recovered from his biopsy. I know I need patience, but John is scared, that he will not be able to breathe without these machines, that he won't come home. I know he will, but I didn't want the first surgery, when he started coughing after that, I didn't want the biopsy. I am done raving now.. and will get back to him. I am supposed to work tomorrow, and not sure what to do. I'll figure it out, and pray John starts taking a turn for the better.
Wednesday, July 20, 2005 (3:48 pm)
Last night John had a muscle spasm, and we sat him up to try and massage it, but his stats, went down, and he said he couldn't breathe, and was having a terrible time. At one point he looked at me and said, "they are going to have to use the tube". meaning the ventilator. He got pain pills, and Ativan, and he slept relatively peacefully, only dropping on occasion, and coughing sometimes, and he received the meds again around 4 and slept till mid morning. We got him out of bed today, to a chair. It took very long with lots of rests, and it was hard on him. The surgeon came in, and told us, that the blood work showed a decline. They are actually afraid that he may have an emergency at night when it may be harder to get him on a ventilator, when doctors aren't there so much, and there was an alternative to the mask. They could put him on the ventilator, for 24 hours, and then tomorrow do a tracheotomy type surgery to insert the breathing tube to use instead of that mask. He said we should discuss it, but John looked at me, and shook his head yes. Do it. They called me out, to ask if he understood, and I told them yes, he did. Within 10 minutes, he was having trouble breathing again, and telling them to do it now. It got bad. They came in, and his stats were dropping, and he was freaking out, and they did it. They let me stay, and I held his hand, but I don't believe he knew it. They are keeping him sedated, and on the vent. I didn't freak out, until they were done. I did pretty good. His stats are good, and steady, and his surgery is at noon tomorrow. I came home to shower, and will be going back again. When he wakes up again, he will be using his trache, instead of the mask. We will see if that's better. I hope so.
I just realized, that I did post were John is. He is in Barnes Hospital-Cardiothoracic Intensive Care
Wednesday, July 20, 2005 (5:33 pm)
I have to add something. I am getting ready to go back up to the hospital, but needed to post. Everyone has been so wonderful to us. It's hard to describe the feeling of watching someone not able to breath, feeling like he is suffocating. It's impossible to describe the Horror of watching him be intibated, while being helpless to do anything except stand there, holding his hand. It was like a scene out of ER. He was losing oxygen, and going through panic, and they were all moving to help him. They(the doctors and nurses)said they usually make everyone leave, but I suppose since I'm pretty permanent there.. and they said, I was doing so well, and I'm not sure why they let me stay really. I hate sentimentality on the internet. But. Through this experience the thing I will always remember, is the nurse named Liz, who helped get John and I through it. She has been wonderful already, helping him, and making sure I had trays(when she was his nurse), while others even said "we never bring trays for relatives". She is the only nurse who helped me bath him, no others even changed his bed in ICU, for his breathing I guess. She was there, when he declined, and I'll never forget her at one point taking John's face in her hands to make him try and focus, to calm down, and help him when he was feeling like he was going to pass out from oxygen deprivation. She took charge of the other nurses, and seemed to know what she was doing, and made sure I was standing by her, to touch John. I saw firsthand the byplay of new doctors(ok, 8 year residents) who are learning to take charge and give orders, and seasoned nurses, who really know what they are doing. And when they were done, and I was overwhelmed, she made sure I sat down, and took me to a room to make sure I broke down in private, and called who I needed to call. If John never remembers what she has done for him.. well, I will never forget.
Thursday, July 21, 2005 (3:28 pm)
It's done, the tracheotomy. He had a few incidents on the ventilator where he started to wake up, and of course became very agitated, trying to pull the breathing tubes out, as it feels like you are gagging on it. But they were able to wean the oxygen saturation down from 100% to 50% while on the vent. They came in around 3 and did the surgery right in ICU. He now has the ventilator hooked up directly to the trache. They will allow him to wake up gradually, and the nurse advised me to go home and rest, as they would probably keep him pretty sedated till tomorrow. She really sort of pushed me/insisted I go, as I must look awful. I looked, and yes, I do. It will be a slow process of weaning him back down to (the doctor hopes) his original oxygen intake he was on before the operation. Till then, he can't talk, or eat. They can eventually plug up the trache, to do that, and even remove it, and the incision will close. When I left, he was resting and his stats were up, and steady. I am off to sleep.
Friday, July 22, 2005 (5:11 am)
I slept 10 hours in my own bed, uninterrupted, except for both kids getting in with me.
Martha went in the hospital early, in hopes of working around noon, and she just called me. John isn't awake, but his numbers are erratic. They now believe there may be an air pocket in one lung, and they made her leave the room, so they can place a tube into the lung, presumably to remove any air. I will find out more when I get there. They are also going to do more x-rays, and another ultrasound or some other type of test for signs of strain on his heart. They have done the ultrasound, and x-rays, at least once and usually several times a day, so maybe it is a different test. They will keep him sedated until his numbers are stable.
On a different note, my job has been great about me being gone, although technically I've only called in, counting today, three days. I talked to HR, about FMLA, and they said I am not eligible, because Johnny and I are not married. OMG! We have been living together for over 10 years, and own a house together! Our anniversary is Sept. 10, and it will be 11 years. I can try for a leave of absence. This is so maddening. The reason he didn't want to marry, is financial. The kids being mine, give us more money not married, and less taxes to pay, and for college, and it's just financially harder to be married. But when it looked like he would be on disability, we had decided it would be better to be married. We just didn't have time to do it before the hospital, and I knew we should have, but we were going to when he got out.
Shanny is coming down tomorrow to either take Josh back, or at least stay a few days here, to help out, or just stay with Josh and Brit. They are missing me I know, and I feel bad, that I can't be with them more, but I need to be at the hospital. Josh especially is feeling lost, and needs someone here with him to keep him from running wild. They can't sit up at the hospital in the waiting room all day, and John really isn't aware they are here, and wouldn't want to see them when he isn't doing well, to begin with. John's cousins are so wonderful, they are talking about fixing meals, so I don't have to eat hospital food, which is expensive. I have been packing a lunch so far. They have been having meetings, for projects and fund raising to help Johnny. I will post some info here. Everyone has been great, and to help, contact Kathleen Wiegand, John's cousin, who is keeping everyone up to date. kmwiegand@prodigy.net
BENEFITING JOHN NICOL 07.22.05 (5:23 am)
All info benefiting John Nicol will be placed here
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Benefiting JOHN NICOL.
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*BASKET RAFFLE @ BASLER*
The employees of Basler(John's employer), in Highland, will hold a special raffle for John. The drawing will be held the 12th of August.
For info please contact Liz. lizzie@hometel.com
Thank you to the Basler employees.
So far these are the baskets for the Basket Raffle being held there:
#1 $100.00 Cash
#2 $100.00 Gift Card to Wal-Mart
#3 Back To School Basket
#4 Bath Basket and Wal-Mart Gift Card
#5 Weber BBQ Grill plus Utensils
#6 Fishing Basket
#7 Energizer Outfitter Big Flashlight
#8 Men's Tools and Toys Basket
#9 4 Cardinals Baseball Tickets-Monday Sept. 12th vs. Pirates 7:10 pm ($36 each-value)
#10 $100.00 Gift Certificate for a Tattoo at Body Treasures in Alton
#11 Golf Basket plus Certificate for cart/18 hole green fees at Oak Brook Golf Course ($200 total value)
#12 4 Circle of Hope Bracelets ($110 value)
#13 Ladies White Gold 3 Stone Diamond Ring ($200 value)
#14 Computer Accessory Basket plus $40.00 photo Certificate at Mr. D’s
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*YARD SALE*
info - August 26 & 27 at 100 Joseph Drive in Fairview Heights, Illinois.
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*BENEFIT @ VFW*
VFW is going to let us use their hall for the Benefit on Saturday, October 22.
More info on this affair as it comes in.
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To help, donate, or for more info please contact to help, contact Kathleen Wiegand, John's cousin. kmwiegand@prodigy.net or myself cat@cathyland.net
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Saturday, July 23, 2005 (5:51 am) - Critical condition
They sent me home to rest, and I had called and was told he was doing fine, as my last post indicated, and John's mom went up the next morning(yesterday) after calling and being told he was fine, only to find that he wasn't. She called me to tell me that his numbers were up and down and they were putting a tube into his lung and testing for his heart. She called me back to say the doctors wanted to meet with us. I got there, and was shocked at what was happening.
He had a bad night. His levels kept dropping. They found that he had a blood clot in his left leg. They don't believe but don't know that it went to his lungs, due to the IPF being so pronounced, they really can't see anything there. They are treating that with heparin, and it's probably the least of the worries. They discovered that he had a mild heart attack during the intbation of the ventilator. They don't see any damage from it, and only found it with blood work. His heart rate went up to 150 at the time, and I was concerned. One side of his heart is enlarged, but doing OK. There is a flap between sides, that had been opening to send blood/oxygen back and forth, that wasn't allowing it to go to the lungs properly, hence the numbers dropping. He is now on nitrous oxide for his heart/lungs though the vent, and it's allowing his heart lungs to function more easily. He is being kept sedated, and paralyzed to also help with this. He is on a steady drip of insulin, and about 12 other meds, including a feeding tube now. His drainage chest tube that was removed last sat. was reinserted to take care of any air leaks to cover all bases. They took the blood work to start the workup for the transplant list.
The goal now, is to keep him stable, get him on the transplant list, wean him off of some oxygen, and wake him. He is currently back down from 100% oxygen, to 50%. His numbers remain in the high nineties. He is stable, but possibly listed in critical condition. I don't have a time frame, I don't really have much more information, it's just sort of wait and see now. I spent the night at the hospital again, and didn't much sleep. The nurses on days, are so very efficient, and the night nurses, well, I don't know, but I was very worried all night. Shannon is coming to stay for a couple of days and when she gets here this afternoon, we will go back. I need to sleep/eat. I don't even want to think about how upset I was yesterday/today, not only because he keeps stepping backwards, that's a given, but because he didn't sign anything before surgery, and without being married, it seems I'm nobody. His parents, even his siblings now supersede me. I can't sign papers/make medical decisions, take FMLA, or even cash his checks due to not being anything except a "Fiance'". I am hating that word. It means "not family/nothing". SA doesn't carry much weight, even after 11 years. The government makes it hard to financially to marry, and hard not to. If I can't take responsibility for signing medical forms, does that mean I don't have to take responsibility for paying? I bet if it came down to paying any bills with just his name on it, then they'd make me responsible. I'm helpless and I HATE it. I just want him to wake up, and come home, and be all right.
Sunday, July 24, 2005 (6:10 pm) - Critical condition
John is still in Critical, but stable condition, and they try to drop the paralyzing drugs, but then it becomes a strain on his lungs to do the work, he becomes agitated, and his saturation drops. So, they try daily, but until then, they will leave him sedated. So he hasn't been awake since they intubated him. I am talking to him, telling him to breath slow and deep and to stay calm so they can take off the paralyzing drugs. Awaiting results of testing for transplant, and if he goes on the list, he will probably be moved up towards the top of the list. It's so hard to sit there at the hospital and see him, and not be able to talk to him, and not have him wake up. It's also hard to not be there. He looks like he has lost weight, which he has of course. They put his feeding tube into his mouth down into his stomach, due to a possible sinus infection/trouble, and it irritating his sinus. They are feeding him every 4 hours or so. His oxygen saturation is at 45% right now. He has been up and down over the last 24 hours. They moved him onto a new bed, that is an air mattress, inflated style bed, that moves air around, so that no one place is hard all the time, for long term care patients I suppose. He did well with the move, and his numbers stayed steady. I should be going back to work tomorrow, and Martha also, but it's difficult to think about, and we shall see. I will go in the morning, and try to be there when the doctors make their rounds, and see if they try to take him off the Rock (Rocuronium, the drug being used to paralyze him), and how he does. I am trying to keep the faith, but it's just so hard to cope, when I miss him so much.
NOTE: I want to thank everyone who made food, and brought it over for us. I really appreciate it, and it's more then I expect, and I hate putting everyone to all the trouble. Thank you again.
Tuesday, July 26, 2005 (7:28 pm)
John is now on the transplant list. He went on it Friday, and yesterday, evidently, lungs had already become available. The doctor doing the transplant, rejected them for John, for several reasons, as being unsuitable. The point is, that when lungs become available, John is at the top of the list. It could be weeks, months, or hours. He already knew, and had done the research, on lung transplants. We knew it would eventually come down to this, we just hadn't planned on it being this soon. This is quite a shock to everyone, that he has progressed this fast.
He is still in critical but stable condition. They pulled the rock(the drug keeping him paralyzed), and he tolerated it very well. Yesterday his nurse was Cindy, who was very good. He is now sedated, but not paralyzed, as they stopped the drug yesterday. He had a rough evening, due to being allowed to come partially awake, by his night nurse who didn't stay in the room with him, which made his blood ox, go down, and pulse rate go up, but now is stable. They are now making sure he remains sedated and comfortable. When he gets agitated, he comes to a bit, but otherwise will probably remain heavily sedated until the doctors think his numbers will remain stable, and right now, it doesn't look like his lungs can accommodate any stress. I plan on working tomorrow, and Thursday. Hopefully, we will not be waiting for lungs for very long, and God willing, he will come through this with successfully, with new lungs, breathing easier.
07.28.05 (11:11 am) - Update
Hello everyone. This is Brittany, Cathy and Johns daughter.
Last night my mom called at around 11:30 and told me to get my grandparents and go to the hospital. Johnny had stopped breathing and his oxygen levels were down very low. We finally got there and camped out in a little room for hours upon end, when the doctors told us that they had no idea what caused Johnny to stop breathing. They put him on an oscillator (I'm not sure how to spell that), which is like a ventilator only instead of waiting for the patient to exhale, it does it for them. It is usually used for children because it forces the patient to take shallow, quick breaths. Right now he's only on sixty percent oxygen, but his stats are good. They're hoping to be able to put him back on the ventilator soon.
They also think that he had another heart attack and that it's his heart causing most of the trouble. What mom is concerned about most, I think, is that Johns stats were down to alarming levels for a long time. There is a chance that when he wakes up he won't be the same. The doctor said that its difficult to say, because its different for every patient or something...but he said that he's seen people with worse stats stay down longer and make a full recovery.
So everyone, pray that we get lungs soon, and that he's strong enough for the transplant.
Thanks,
Brittany
Thursday, July 28, 2005 (5:24 pm)
It is 9 something pm. I came home to eat, and shower. Brit did very well, in posting for me.
John had been off the paralyzing drugs, and was doing well. There were incidents. One nurse let him wake up, and didn't stay in the room. He became agitated, and his blood ox would fall to around 70-80% and his heart rate would go up. I became upset, and the doctor came in and assured me they would keep him sedated. They did a good job, and John would wake up when he had to cough, or became upset with something they did to him, so they learned to suction him while under, so he wouldn't cough. But you could talk to him, tell him to calm down, or reassure him, and he would quiet. He actually talked to one of the nurses two nights ago, Liz, who was with him during one of the coughing episodes, and asked her "what happened". She explained that he had been trached, and he quieted down. He recognized her voice, as being there when he went on the vent. Yesterday, his night nurse, Brooke, who was with him the night before, and again tonight also, was surprised that his vent was set to allow him to do the breathing, with assistance from the vent. This was really good.
During the evening his blood oxygen levels dropped, so they decided he was getting tired, and needed to adjust the vent to do more of the breathing again. They did. I noticed he didn't appear to be taking as many breaths, but before I could question/become alarmed about it, he woke up coughing. The nurse suctioned his trache, but he still didn't become calm. She thought he was just agitated, and we talked to him to calm him, and she told him I was there.
He already knew, because when she said that, he squeezed my hand really hard to let me know, he knew. But he wasn't getting oxygen, and his stats were dropping to 80 then 70's. I asked her to suction again. She did, and it didn't help, and finally, started calling people. He was in the 60's, and she tried to bag him and breath past the vent. He dropped to the 50's, and the doctors, respiratory therapists, nurses, started trying to help him, by putting a chest tube in his left lung(he now has one on each side). Down to the 40's, and he wasn't getting oxygen, and they used a scope to look into his trachea(found nothing blocking really), and I of course was getting hysterical. I just wanted him to breathe. His color looked bad, and his heart rate had went up of course. I called home, told Brit to call everyone, that he wasn't breathing.
They made me go into the waiting room then, but I had seen his oxygen dip into the 20's, then back up to 30 and 40, and back down. I thought I was watching John die. The doctor came out while I was in the lobby area, sitting on the floor, and told me, he was back into the 60's, but they didn't know why he had dropped. They were bringing in a special vent, and would have to just wait and see. A nurse took me to a "quiet" room, to wait. He was to the 70's, and the oscillator came up. His parents and Brit arrived in the mean time.
Doctors came and said, "we don't know", but they told me they had worked on him for something like 40 minutes, and couldn't tell the toll it had taken on organs, and brain.
We went back, and he was on the new vent, and in the 80's and 90's again, and it shakes him, due to the very fast, shallow breathes. They had to paralyze him again. At around 4 his parents left to try and rest, and I stayed in the room, and tried to sleep. I stayed there all day, and tried to sleep all day, (sort of like a self induced sedation). His parents came and went and came back, and so did the doctors.
It seems, their best guess, is that his heart and opened the flap(they kept saying whole) between the right and left side, so that no oxygen was going to his lungs. He probably had another mild heart attack, and there appeared to be no damage. This vent is the last option for a very sick person. He is down to 60 percent oxygen from 100% when they put him on, and they are trying for 40 to 50 percent and then tomorrow to put him back on the other vent, and remove the paralyzing drugs again.
He is stable, still critical, and if there is something worse than critical, maybe he is that. The doctors(there are so many) all indicate he is still on the list, but are not really sure if he is strong enough, or well enough to have a transplant, especially while on this vent. He can't have a CAT scan until off of it either. We are waiting to talk to his transplant doctor to ask that, as it will be his decision I think.
He needs to be stable, and get new lungs.
He needs to come home, and I need, we all need, this nightmare to be over.
Pray.
07.28.05 (8:26 pm) - OMG
This is Brittany again. Mom's at the hospital with Johnny...and not ten minutes after she left, guess who called? The Hospital!
They have lungs!!!!!!!!!
Theyhavelungstheyhavelungstheyhavelungs
The doctor is doing the surgery tomorrow morning asap. Probably sometime after six, because that poor guy has to get some sleep.
Thank you everyone who's been praying or making us food or whatnot, it's really helped. But we're not out of the woods yet. So those of you who pray: keep praying!!! The lungs have to take, and John has to get well. And of course, it would help if his brain hadn't suffered any damage from the episode last night.
Even though its 1:30 in the morning, I just thought you all should know asap!
love lots,
Britt
Saturday, July 30, 2005 (2:17 pm)
I will start at the last time I posted, although thank you Brit for updating when I couldn't. After I posted the last time, I tried to sleep at home after getting an update from the hospital that all was quiet. I couldn't sleep. I was crying, praying, begging, evening trying to bargain with God. Everything except sleeping. I went back to the hospital. As I walked in I noticed Brooke(his nurse)on the phone, and John's room had the lights up, which is not normal, because the goal is to keep him quiet. So I went back to the desk, warily, to see what had happened. She was smiling though.. and so was Brian, and Debra, two of his other nurses, and Brooke said "I was trying to call you, he's getting lungs!". I was stunned to say the least. In the morning after 6:30 a.m. they said, and it was 1 a.m. I called everyone, and then really got nervous, because he had to stay stable till then. His parents showed up of course, as they were excited. Around 4:30 I slept in the waiting room and asked Martha to wake me at 6. Of course I woke about 10 till 6 on my own, sitting straight up.
Surgery would be at 8 I was informed. At 7:15, the doctors started coming in, due to no one knowing how they were going to transport him to the O.R. with his oscillator, and it didn't have a battery or back up. It was decided to put him on the regular vent, see how his blood ox was doing, and then take him down with the portable. It was 100% and good, so that's how he went down at 8. At one point, one of the doctors touched the oscillator, to look at the tubing, and John started making gurgling/choking noises, and his stats started dropping. The nurse and I looked at each other, and she said, "You can't touch anything with him". I leaned over and whispered to her, "Please don't leave him alone with them!". She said, "Oh, I won't".
Everyone was so happy, he was going to get lungs, and night shift hugged me goodbye, and even the receptionist was happy. We went to breakfast and came up to the waiting room. I laid down at around 9, and woke up around 10 I think, hearing John's cousin's talking. They helped pass the time, and I got a call at 11 that the lungs were in, but he was still on bypass. Wow, that was fast. So we waited, and talked. At around 2 they brought him back to ICU, same room, and the doctor came in to talk to us. He was doing well, and received two lungs. One of them the doctor didn't like the whole thing, so only put in about 3/4's of it. So technically, he has 1 and 3/4 lungs. They would keep him quiet and not try to wake him till tomorrow, and take it slow, still on the vent, but at minimal settings hopefully. We got to see him at around 4. We took turns going in, as they didn't want me to sleep there in the room that night. Around 6 or 7, they said there was a little more drainage then could be explained, and was taking him back into the O.R. to look around, and stop any bleeding. He came back out around 9:30 and they had stopped arterial bleeding and he was doing fine again.
By 11:30 P.M. on July 29, 2005, John Nicol had new lungs, and was off the Nitrous Oxide, and was still on the vent with a trache, but on only 40% oxygen, and 12 breaths a minute, so any breaths over that was his own.
I stayed in the waiting room and tried to sleep, but with the bright lights, and other people(waiting for a heart transplant of their own), sleep was in short supply. At 6 or so, I was in his room, and he was the same. His mom came, and they tried to take him off some of the sedation. He became agitated, and his blood pressure went to over 200. So they decided to put him back on some stuff, and cut it in half, slowly taking him off. So today, we just sat with him, and he is breathing better, and resting easy, but not really waking. I came home finally to sleep. They will try again tomorrow to wake him, but are not really in a hurry. Giving him more time on a low vent setting is more important. He was down to 40% and 8 breaths a minute. He was actually taking 15-20 breaths, so after 8 the rest are his. His blood ox was good, and the stats were in the high 90's and were staying there, even when his trache was cleaned and he was suctioned. It really didn't even bother him. Amazing. Just days ago, you couldn't even move him, let alone clean the trache, and really, they weren't confident enough to even try, as he would de-saturate, not breath, and even worse.
Now, We Just Need Him To Wake Up, So Keep Praying.
Saturday July 30, 2005 (5:28 pm)
Special Note. I want to thank everyone for all the prayers, support, food, financial help, and comfort. I don't know how I would cope,(and I know sometimes it doesn't seem like I am!), without everyone's help. There are fund raisers, car washes, and even raffles where John works. Cousins bringing food, parents just giving us money to help out, and all the children washing cars, and cleaning house. Friends, Cousins, Nieces and Nephews, Sons and Daughters, Co-Workers, Parents, Siblings, Everyone is wonderful. I can't even name everything that has been done, being done, or will be done for John and I. I will make sure John knows when he wakes up, how much everyone loves him, and cares about us. Even the patients, doctors, nurses, and employees at the hospital have been supportive, and noticed when I was able to finally smile. As if I didn't already cry enough.....
Sunday July 31, 2005 (7:28 pm)
This will be the day that John woke up with new lungs.
He didn't believe me at first. He shook his head no. I said yes, you have had your transplant. To say he was overwhelmed is an understatement. He can't talk, due to the trache, and he can't really move, due to being so weak, and having been paralyzed so much. He can't see yet, due to not using his eyes, and the paralyzing drugs we think. He did end up moving his arms and legs, a little. He could move his head slowly. He knew me. He knew his mother and sister. He could answer yes and no questions, but sometimes slowly. He did smile a couple of times, when I told him to get better and come home so we could get married, he smiled. He will need quite a bit of time to recover. He has been through allot, and it will take a lot to get through the next couple of weeks also. I pray he will make a full recovery, but I am only speculating at this point what damage, if any , was caused by lack of oxygen the other night, when he had to go on the oscillator. The nurses seem optimistic, and they say this seems bad, but he needs time, and they have seen worse(as in more disoriented). Not enough oxygen will not usually make you blind, but too much can. So the eye sight should get better. He still thinks he can't breathe sometimes, and it will take awhile for that to go away, especially since he is still on the vent. They nurses tell me it will take days for the drugs to leave his system, and he will not remember today. They wanted us all to leave and go home tonight so he would sleep, and not try to stay awake. I wanted to stay with him so badly. I am still worried, that he will panic, or not see, or the oxygen deprivation will affect how he recovers, or how much he recovers, or his muscles, or something. He will receive a CAT scan if they think he needs one, or neurology will be consulted if needed, but really, it should just take time. And we will take one day at a time, and deal with one problem at a time. He is awake, and breathing with new lungs today.
The cheerleaders had their car was today, and I have pictures. I believe they raised over $300.00, and we now have a pair of tickets to the RAMS pregame on August 12 as well to either auction or raffle off.
Tuesday August 2, 2005 (4:58 pm)
On Monday, yesterday, when I got to the hospital at around 10 a.m., they wouldn't let anyone go back because they were doing a procedure on someone. The social worker was there I found out, but we didn't get to talk to her. We finally went back after noon, to find that they had sedated John again, they said he became agitated when he woke up. High blood pressure, and pulse. I say, it's because he forgets he had a transplant, and they don't tell him, and don't want me to spend the night. I wasn't happy.
We sat with him, and he would come out of it a bit, and sort of open his eyes, and I would tell him he got his transplant. Then they would knock him back out. The nurse kept saying they wanted him calm, to not talk to him, yet they weren't in there, let him wake up, and kept the lights and radio on. So I talked to him, calmed him, and let him know he had lungs. I really can't stand some of the nurses up there. Some are great... some need an attitude/training adjustment. So I stayed because Scott was his night shift nurse, and we had an experience with him already, ignoring John. So when John came too, I was there. At 2 am I went to the waiting room(they didn't offer me a chair in the room), and slept on the floor till 6 a.m. The doctors came in and said we will wake him again. The same nurse from the day before came in and said they wanted to wake him but I should be quiet.(too late for that, as he had already started to rouse, and I told him he had lungs, be calm!) He woke up, and of course the nurse was off, to see to her other patient, and I was left with him while he was trying to get his leg off the bed. So we sat him up a bit, and he still couldn't see, but he would answer questions. He knew his mom when she came in, but she mentioned the kids, and he didn't understand. (he would shrug his shoulders if he didn't know) I asked him if he knew who his mom was, and he did, and I asked him if he knew who I was and he said no. So ok. As the day wore on, they sat him in a chair. He could move his feet a little, and his hands, and head. He was exercising his legs and arms a bit though, and tried to stand(that wasn't happening), and couldn't really get comfortable. He was mad at the nurses, and said they hurt him(they did when they put him in the chair), and then he got mad at me when I wouldn't give him a drink, and stuck his bottom lip out, and wouldn't talk to me anymore. I said "you probably don't like me, huh?" and he said shook his head no. I said but you love me, and he shrugged. Still didn't know me. The Reverend Dave came in and John knew him, and wanted him to pray with us. So we did. John got a little frustrated, because he wanted to tell him something, but we couldn't understand what.
They put him back in bed, and he got upset, and said they hurt him again. We told him it was not on purpose. He said yes it was. So Chrissy came with Bobby and Laura, and he knew them, and he tried to wave at Bobby and Laura. He wanted a drink, so i gave him a swab, but he wanted more, and made faces at me. It was pretty funny. His parents left to eat, and his mom said "can i go?" and he said yes, and she said,"can Cathy stay with you?" and he said no. I said, you want me to go? and he shook his head yes. So I left, for a second. Come on, did you think I'd leave him? He was a bit agitated that I left, he just didn't know why. While Chrissy was there, he complained again that his nurse hurt him on purpose, after she cleaned his trache. He would mouth stuff, and we would ask questions. I explained that he had his lungs, his transplant and it was OK, as it was going soon. He said no he didn't. So while Chrissy was there, we convinced him he did, as he'd forgotten again. They left, and he mouthed "I love you, bye", to Laura, and I said "ya, he won't say that to me, he doesn't know who i am", and he turned to me, looked(as he was seeing a little), really studied me for moment and said "I love you, too". I said I know, and cried. And I tried to get him to sleep, and he suddenly realized he couldn't see, and got upset, and I explained stuff again to him, but he knew me, and he understood, about the vision, being calm, the catheter, the tube feeding(which I couldn't REALLY dwell on, as he hates it), and he was so emotional, and his stats went up. But he understood, and I could see the clarity in his eyes,(well, there were still moments when he would look drugged), and he understood about his lungs, the trache, the vision, and when I asked him to calm down, to lower his pulse, he looked at me like I was crazy. I laughed, and said he could do it, by calming down, so he asked to watch T.V. and wanted the Fish tank channel. It's a channel on the hospital tv that is a radio station, and shows a live feed of a fish tank in Children's Hospital. We watched it before together. I was surprised, until I remembered that fish tanks were supposed to calm you. After he blew me a kiss, not just any kiss, but only the way Johnny has ever blown me a kiss, I knew he was in there, and if he forgets everyday, I'll keep reminding him, and I know eventually he will remember. His muscles can be improved again with exercise and physical therapy, but his mind... I was worried. And If he has lost stuff.. well, we can work on it.
His parents came in, and he was still to high on his blood pressure, and pulse, as he was still digesting the good news, that he had lungs, and the nurse wanted us to go home so he could rest. So we did, but I asked her to put notes in to advise his nurses he forgets he had his transplant, to tell him, and not let Scott ever shave him again. (he is a bloody mess) Going back tomorrow, but right now, it really looks like a miracle.
We sat with him, and he would come out of it a bit, and sort of open his eyes, and I would tell him he got his transplant. Then they would knock him back out. The nurse kept saying they wanted him calm, to not talk to him, yet they weren't in there, let him wake up, and kept the lights and radio on. So I talked to him, calmed him, and let him know he had lungs. I really can't stand some of the nurses up there. Some are great... some need an attitude/training adjustment. So I stayed because Scott was his night shift nurse, and we had an experience with him already, ignoring John. So when John came too, I was there. At 2 am I went to the waiting room(they didn't offer me a chair in the room), and slept on the floor till 6 a.m. The doctors came in and said we will wake him again. The same nurse from the day before came in and said they wanted to wake him but I should be quiet.(too late for that, as he had already started to rouse, and I told him he had lungs, be calm!) He woke up, and of course the nurse was off, to see to her other patient, and I was left with him while he was trying to get his leg off the bed. So we sat him up a bit, and he still couldn't see, but he would answer questions. He knew his mom when she came in, but she mentioned the kids, and he didn't understand. (he would shrug his shoulders if he didn't know) I asked him if he knew who his mom was, and he did, and I asked him if he knew who I was and he said no. So ok. As the day wore on, they sat him in a chair. He could move his feet a little, and his hands, and head. He was exercising his legs and arms a bit though, and tried to stand(that wasn't happening), and couldn't really get comfortable. He was mad at the nurses, and said they hurt him(they did when they put him in the chair), and then he got mad at me when I wouldn't give him a drink, and stuck his bottom lip out, and wouldn't talk to me anymore. I said "you probably don't like me, huh?" and he said shook his head no. I said but you love me, and he shrugged. Still didn't know me. The Reverend Dave came in and John knew him, and wanted him to pray with us. So we did. John got a little frustrated, because he wanted to tell him something, but we couldn't understand what.
They put him back in bed, and he got upset, and said they hurt him again. We told him it was not on purpose. He said yes it was. So Chrissy came with Bobby and Laura, and he knew them, and he tried to wave at Bobby and Laura. He wanted a drink, so i gave him a swab, but he wanted more, and made faces at me. It was pretty funny. His parents left to eat, and his mom said "can i go?" and he said yes, and she said,"can Cathy stay with you?" and he said no. I said, you want me to go? and he shook his head yes. So I left, for a second. Come on, did you think I'd leave him? He was a bit agitated that I left, he just didn't know why. While Chrissy was there, he complained again that his nurse hurt him on purpose, after she cleaned his trache. He would mouth stuff, and we would ask questions. I explained that he had his lungs, his transplant and it was OK, as it was going soon. He said no he didn't. So while Chrissy was there, we convinced him he did, as he'd forgotten again. They left, and he mouthed "I love you, bye", to Laura, and I said "ya, he won't say that to me, he doesn't know who i am", and he turned to me, looked(as he was seeing a little), really studied me for moment and said "I love you, too". I said I know, and cried. And I tried to get him to sleep, and he suddenly realized he couldn't see, and got upset, and I explained stuff again to him, but he knew me, and he understood, about the vision, being calm, the catheter, the tube feeding(which I couldn't REALLY dwell on, as he hates it), and he was so emotional, and his stats went up. But he understood, and I could see the clarity in his eyes,(well, there were still moments when he would look drugged), and he understood about his lungs, the trache, the vision, and when I asked him to calm down, to lower his pulse, he looked at me like I was crazy. I laughed, and said he could do it, by calming down, so he asked to watch T.V. and wanted the Fish tank channel. It's a channel on the hospital tv that is a radio station, and shows a live feed of a fish tank in Children's Hospital. We watched it before together. I was surprised, until I remembered that fish tanks were supposed to calm you. After he blew me a kiss, not just any kiss, but only the way Johnny has ever blown me a kiss, I knew he was in there, and if he forgets everyday, I'll keep reminding him, and I know eventually he will remember. His muscles can be improved again with exercise and physical therapy, but his mind... I was worried. And If he has lost stuff.. well, we can work on it.
His parents came in, and he was still to high on his blood pressure, and pulse, as he was still digesting the good news, that he had lungs, and the nurse wanted us to go home so he could rest. So we did, but I asked her to put notes in to advise his nurses he forgets he had his transplant, to tell him, and not let Scott ever shave him again. (he is a bloody mess) Going back tomorrow, but right now, it really looks like a miracle.
Thursday August 4, 2005 (9:40 pm)
I'd like to say that I came into John's room today, and he smiled at me, and was happy to see me. But I can't.
I got there late today, around 1pm, after making sure the kids had everything they needed to register for school, checking voice mail(which we obviously haven't checked for over 2 months), and calling back people with updates on John, doing laundry, showering, and stopping at the bank. He was sitting in the chair on his T thingy, breathing by himself. He looked so small, and skinny. He just looked at me out of the tops of his eyes, with a look that said volumes. It said, " I'm tired", "This should be you", "It's all your fault", "who the heck are you.. oh, ya", "not you again", "don't talk to me", or possibly, "Where the heck have you been?". But his eyes didn't say "hello honey, glad to see ya". oh well. They put him back in bed by picking him up by the sheet under him, and lifting and putting him in bed, and it made him look so small. He slept, due to still breathing on his own, and being tired. His stats looked excellent, and you couldn't tell he wasn't on the vent, and his blood pressure and heart rate were excellent. They put him back on the vent after 6pm. He went over 12 hours breathing by himself with just oxygen. Brit and Josh came, and he may not have recognized their names, he did their faces.
They did a test by putting a camera down his nose to see if he could swallow and thus eat , but he failed, and the food went down to his lungs(they suctioned it out), and they will try again on Monday.
They put in a new arterial line in his upper arm, as he has one now in his neck. He had two others, but they were taken out. This arterial line can stay there for up to a year, and will be used for antibiotics, and to draw blood, and can be used even when he goes home. I stayed till they were done, and went back in to check and make sure he was calm before I would go home. He was, and he just layed there, and probably slept through the insertion of the line. I told him I was going soon to check on the kids. He looked so calm, and he looked at me, and we talked for awhile. I know, we couldn't have talked you think. But we could, and we did. He saw me and said he loved me with his eyes and his hand on my hair and my face and eyes. He knew he was going home but I'm not sure he knew where home was. He told me he remembers the pool, home, his water bed, and not Benny our cat. I asked him if he was ready to exercise, and he looked at me at first with his "what do you mean?" look, then I repeated exercise, and he laughed, and I could see in his eyes that he got the joke. He remembered his computer, but maybe not his Network +, A+, CCNA, CCNP certificates. He finally pointed and wanted me to go, and I asked if he wanted me to go home, and he said yes. I asked him if he was tired and ready to sleep, and he just looked at me, and gave me his not really shrug. I asked him if he wanted me to go to check on the kids, and he said yes. That was at 11pm. So I told him not to forget he had his transplant when he woke up, and not to forget me.
I got there late today, around 1pm, after making sure the kids had everything they needed to register for school, checking voice mail(which we obviously haven't checked for over 2 months), and calling back people with updates on John, doing laundry, showering, and stopping at the bank. He was sitting in the chair on his T thingy, breathing by himself. He looked so small, and skinny. He just looked at me out of the tops of his eyes, with a look that said volumes. It said, " I'm tired", "This should be you", "It's all your fault", "who the heck are you.. oh, ya", "not you again", "don't talk to me", or possibly, "Where the heck have you been?". But his eyes didn't say "hello honey, glad to see ya". oh well. They put him back in bed by picking him up by the sheet under him, and lifting and putting him in bed, and it made him look so small. He slept, due to still breathing on his own, and being tired. His stats looked excellent, and you couldn't tell he wasn't on the vent, and his blood pressure and heart rate were excellent. They put him back on the vent after 6pm. He went over 12 hours breathing by himself with just oxygen. Brit and Josh came, and he may not have recognized their names, he did their faces.
They did a test by putting a camera down his nose to see if he could swallow and thus eat , but he failed, and the food went down to his lungs(they suctioned it out), and they will try again on Monday.
They put in a new arterial line in his upper arm, as he has one now in his neck. He had two others, but they were taken out. This arterial line can stay there for up to a year, and will be used for antibiotics, and to draw blood, and can be used even when he goes home. I stayed till they were done, and went back in to check and make sure he was calm before I would go home. He was, and he just layed there, and probably slept through the insertion of the line. I told him I was going soon to check on the kids. He looked so calm, and he looked at me, and we talked for awhile. I know, we couldn't have talked you think. But we could, and we did. He saw me and said he loved me with his eyes and his hand on my hair and my face and eyes. He knew he was going home but I'm not sure he knew where home was. He told me he remembers the pool, home, his water bed, and not Benny our cat. I asked him if he was ready to exercise, and he looked at me at first with his "what do you mean?" look, then I repeated exercise, and he laughed, and I could see in his eyes that he got the joke. He remembered his computer, but maybe not his Network +, A+, CCNA, CCNP certificates. He finally pointed and wanted me to go, and I asked if he wanted me to go home, and he said yes. I asked him if he was tired and ready to sleep, and he just looked at me, and gave me his not really shrug. I asked him if he wanted me to go to check on the kids, and he said yes. That was at 11pm. So I told him not to forget he had his transplant when he woke up, and not to forget me.
August 5, 2005 (8:15 pm)
Today my oldest daughter graduated from Missouri Southwestern and I missed it. There is really nothing else to say after that, it's unbelievable.
John was sleeping and on the T thingy and breathing by himself, with on 40% which is the equivalent of about 10 liters of oxygen. John was using 4-6 when he went in the hospital. He stayed on it for 15 hours today, then went back on the vent. He doesn't know that though. He slept through it. Barely moved. Slept through a broncoscopy, a bath, and they sat him in a chair, and he was awake for maybe an hour, then fell asleep in the chair. He is weak, and disoriented. Didn't remember much. They started testing for infections around 9pm due to his lethargy. They don't really think he has one, they think it's medications, and they stopped the methadone today. It could also be from breathing on his own, and being weak from the effort. He woke at around 10 after they put him on the vent, for about 45 minutes. He knew me, but didn't really know where he was, or why. They must have given him something for his blood pressure, it dropped to the 90 or 40 range. Truc, his nurse was watching it, and she has had John for a patient often. Tomorrow, I'm supposed to take the kids for school stuff, and Martha will stay, then Monday, she has something to do and I'll stay. I'd stay anyway of course. Someone also indicated that he might have to be in a rehab center for awhile instead of leaving the hospital and going home. They are supposed to start being more aggressive with his physical therapy tomorrow, and possibly fix something so he can talk with his trache. But so far physical therapy has meant sitting up in a chair. But I don't have time tables, and it sure didn't look like much would happen tomorrow as he isn't really moving, but he always fools me.
John was sleeping and on the T thingy and breathing by himself, with on 40% which is the equivalent of about 10 liters of oxygen. John was using 4-6 when he went in the hospital. He stayed on it for 15 hours today, then went back on the vent. He doesn't know that though. He slept through it. Barely moved. Slept through a broncoscopy, a bath, and they sat him in a chair, and he was awake for maybe an hour, then fell asleep in the chair. He is weak, and disoriented. Didn't remember much. They started testing for infections around 9pm due to his lethargy. They don't really think he has one, they think it's medications, and they stopped the methadone today. It could also be from breathing on his own, and being weak from the effort. He woke at around 10 after they put him on the vent, for about 45 minutes. He knew me, but didn't really know where he was, or why. They must have given him something for his blood pressure, it dropped to the 90 or 40 range. Truc, his nurse was watching it, and she has had John for a patient often. Tomorrow, I'm supposed to take the kids for school stuff, and Martha will stay, then Monday, she has something to do and I'll stay. I'd stay anyway of course. Someone also indicated that he might have to be in a rehab center for awhile instead of leaving the hospital and going home. They are supposed to start being more aggressive with his physical therapy tomorrow, and possibly fix something so he can talk with his trache. But so far physical therapy has meant sitting up in a chair. But I don't have time tables, and it sure didn't look like much would happen tomorrow as he isn't really moving, but he always fools me.
August 7, 2005 (7:50 pm)
Today was the a wonderful day.
Yesterday, I took my kids school shopping, and stayed home and had dinner with them and Shannon was there with us. She left, and I of course called the hospital and talked to Heather his day nurse who is great, and she told me he was still sleeping. They were still getting test results back, but thought that they had wore him out with breathing on his own. I also had talked to Martha, who told me the same. I also talked to Truc on the night shift , who said the same...sleeping. So I stayed with the kids, and it was my first day off.
I got to the hospital a bit before 10 am, and when I went in he was asleep on his t thingy. I took his hand and put my hand on the side of his face, and when he turned his head into my hand, I hoped it was because he knew I was there. I put his hand down, to get something and he raised it to the elbow, looking for me. I took it again, put it down, and again he raised it looking for me. He woke, in pain though, and I talked with his nurse, Kellie today, and she said he really didn't sleep last night real well. They think he was wore out from breathing, and the methadone was finally wearing off. The plan was to go slow, and they would give him pain medicine, but no narcotics.
He was coherent, could see well enough to watch T.V. with me, and could move his arms and legs. They made him sit in the chair(he didn't want to, cause it would hurt), after giving him some pain medication. They didn't put him in the chair, but helped into it. He wanted to look out the window, and three nurses packed him all up, and pushed his chair and IV's and monitors, and oxygen down the hall into an empty room with a view of Forest Park to look at. It was great. We watched TV for a while and he laughed at several commercials, and new when I turned on a Rush CD, cause I asked him who it was and he told me.(one of his favorite bands) And when a commercial came on with an ACDC song, we both looked at each other, me to see if he would recognize it, and him to see if I would notice him recognizing it, and we both started laughing. We laughed, and cried a lot, and he told me to tell Shannon he was proud of her for graduating Cum Laud, and was sad we didn't see it. Told me he missed his babies, who are 14 and 17 and aren't really babies at all, and me, and wants to go home of course, and knows he can't yet. I left at 10:45 pm so he could sleep, and I hope he sleeps better tonight, but he should after breathing for about 6 hours on his own, and staying awake for most of the day. It was a very emotional day. And a very best day.
Yesterday, I took my kids school shopping, and stayed home and had dinner with them and Shannon was there with us. She left, and I of course called the hospital and talked to Heather his day nurse who is great, and she told me he was still sleeping. They were still getting test results back, but thought that they had wore him out with breathing on his own. I also had talked to Martha, who told me the same. I also talked to Truc on the night shift , who said the same...sleeping. So I stayed with the kids, and it was my first day off.
I got to the hospital a bit before 10 am, and when I went in he was asleep on his t thingy. I took his hand and put my hand on the side of his face, and when he turned his head into my hand, I hoped it was because he knew I was there. I put his hand down, to get something and he raised it to the elbow, looking for me. I took it again, put it down, and again he raised it looking for me. He woke, in pain though, and I talked with his nurse, Kellie today, and she said he really didn't sleep last night real well. They think he was wore out from breathing, and the methadone was finally wearing off. The plan was to go slow, and they would give him pain medicine, but no narcotics.
He was coherent, could see well enough to watch T.V. with me, and could move his arms and legs. They made him sit in the chair(he didn't want to, cause it would hurt), after giving him some pain medication. They didn't put him in the chair, but helped into it. He wanted to look out the window, and three nurses packed him all up, and pushed his chair and IV's and monitors, and oxygen down the hall into an empty room with a view of Forest Park to look at. It was great. We watched TV for a while and he laughed at several commercials, and new when I turned on a Rush CD, cause I asked him who it was and he told me.(one of his favorite bands) And when a commercial came on with an ACDC song, we both looked at each other, me to see if he would recognize it, and him to see if I would notice him recognizing it, and we both started laughing. We laughed, and cried a lot, and he told me to tell Shannon he was proud of her for graduating Cum Laud, and was sad we didn't see it. Told me he missed his babies, who are 14 and 17 and aren't really babies at all, and me, and wants to go home of course, and knows he can't yet. I left at 10:45 pm so he could sleep, and I hope he sleeps better tonight, but he should after breathing for about 6 hours on his own, and staying awake for most of the day. It was a very emotional day. And a very best day.
August 8, 2005 (6:43 pm)
John was weak today, and tired, but not like before. He woke up, and sat in the chair, and breathed on his own for about 4 hours, but it wore him out. They took out the chest tubes today, and gave him blood. John is improving slowly, he still gets confused, and he gets tired from breathing on his own, and he is still very weak, and can't walk, but I know he is getting better, it's just a slow thing. He didn't sleep well last night or the night before. I hate to leave him when he's like that, but they don't like me to stay the night. He wakes up a little confused after napping in the evenings, and doesn't like to be alone at night, or always remember everything, but he remembers the important things. Like when I asked him who I was and he said, "Cathy Nicol". Well, not yet.
Just a reminder that the next fund raiser meeting will be held Tuesday night, August 9, at Nikki & Dave Cates' house, at 7:30 p.m. If you need the address please email. I would try and go myself, but I am returning to work tomorrow for the first time since John went into the hospital. Let's see if I can do it.
Thank you to the Bassler employees. So far these are the baskets for the Basket Raffle being held there:
#1 $100.00 Cash
#2 $100.00 Gift Card to WalMart
#3 Back To School Basket
#4 Bath Basket and Wal Mart Gift Card
#5 Weber BBQ Grill plus Utensils
#6 Fishing Basket
#7 Energizer Outfitter Big Flashlight
#8 Men's Tools and Toys Basket
#9 4 Cardinals Baseball Tickets-Monday Sept. 12th vs. Pirates 7:10 pm ($36 each-value)
#10 $100.00 Gift Certificate for a Tattoo at Body Treasures in Alton
#11 Golf Basket plus Certificate for cart/18 hole green fees at Oak Brook Golf Course ($200 total
value)
#12 4 Circle of Hope Bracelets ($110 value)
#13 Ladies White Gold 3 Stone Diamond Ring ($200 value)
#14 Computer Accessory Basket plus $40.00 photo Certificate at Mr. D's
Just a reminder that the next fund raiser meeting will be held Tuesday night, August 9, at Nikki & Dave Cates' house, at 7:30 p.m. If you need the address please email. I would try and go myself, but I am returning to work tomorrow for the first time since John went into the hospital. Let's see if I can do it.
Thank you to the Bassler employees. So far these are the baskets for the Basket Raffle being held there:
#1 $100.00 Cash
#2 $100.00 Gift Card to WalMart
#3 Back To School Basket
#4 Bath Basket and Wal Mart Gift Card
#5 Weber BBQ Grill plus Utensils
#6 Fishing Basket
#7 Energizer Outfitter Big Flashlight
#8 Men's Tools and Toys Basket
#9 4 Cardinals Baseball Tickets-Monday Sept. 12th vs. Pirates 7:10 pm ($36 each-value)
#10 $100.00 Gift Certificate for a Tattoo at Body Treasures in Alton
#11 Golf Basket plus Certificate for cart/18 hole green fees at Oak Brook Golf Course ($200 total
value)
#12 4 Circle of Hope Bracelets ($110 value)
#13 Ladies White Gold 3 Stone Diamond Ring ($200 value)
#14 Computer Accessory Basket plus $40.00 photo Certificate at Mr. D's
Wednesday, August 10, 2005
John is doing so well. Yesterday I went to the hospital before going to work. He was alert, and they said they were going slow on the T so they didn't wear him out, and they made him walk(with lots of help) to his chair, and they checked the range of motion on his
arms. He can move one side a little easier then the other. They turned his chair around so he could "view out the window". I thought view was few the other
day, as I'm not perfect at reading lips. Pretty good though. And they told me he slept pretty well the previous evening, and he said he woke up after i left and couldn't go right back to sleep, but he did eventually. He likes me to stay until he's asleep,
before I leave. I went back after work, and sat with him till around 11:30 and I thought he was sleeping. He got another new bed and this one was not noisy. He said it was more comfortable also.
I was able to get to the hospital around 9:30 this morning to sit with him and they had done his eating test again, and he failed again. Heather, his nurse again today, told me he had a vocal cord in the way of his swallowing. They weren't going to retry the test for a couple of weeks, and see if it improves on it's own. They didn't know if he would need to be seen by an ear/nose/throat doctor later, or if if was possibly paralyzed, or just swollen from the intibation/trache, but it shouldn't interfere in his breathing, or
talking. Today John will be on the T for 6 hours, rest for 2 on the vent then go back on it for 6 hours. Sit in a chair again, of course. He is very alert,
and I questioned him and he knows the equivalent of pie to the 6th decimal, which he always did, and I had to actually look up to see if he was correct.
3.142857. he was. He also said he wanted to be out of the hospital and married by his birthday. I agree.
And he knew when that was, and seems to remember important things, and really how well can I test him? He wants to actually get married(the "m" word we call it) in the hospital. I'll give him some time for that
arms. He can move one side a little easier then the other. They turned his chair around so he could "view out the window". I thought view was few the other
day, as I'm not perfect at reading lips. Pretty good though. And they told me he slept pretty well the previous evening, and he said he woke up after i left and couldn't go right back to sleep, but he did eventually. He likes me to stay until he's asleep,
before I leave. I went back after work, and sat with him till around 11:30 and I thought he was sleeping. He got another new bed and this one was not noisy. He said it was more comfortable also.
I was able to get to the hospital around 9:30 this morning to sit with him and they had done his eating test again, and he failed again. Heather, his nurse again today, told me he had a vocal cord in the way of his swallowing. They weren't going to retry the test for a couple of weeks, and see if it improves on it's own. They didn't know if he would need to be seen by an ear/nose/throat doctor later, or if if was possibly paralyzed, or just swollen from the intibation/trache, but it shouldn't interfere in his breathing, or
talking. Today John will be on the T for 6 hours, rest for 2 on the vent then go back on it for 6 hours. Sit in a chair again, of course. He is very alert,
and I questioned him and he knows the equivalent of pie to the 6th decimal, which he always did, and I had to actually look up to see if he was correct.
3.142857. he was. He also said he wanted to be out of the hospital and married by his birthday. I agree.
And he knew when that was, and seems to remember important things, and really how well can I test him? He wants to actually get married(the "m" word we call it) in the hospital. I'll give him some time for that
August 11, 2005 (3:11 am)
I went after work to see him and he looked great. He laughs with me, and looks comfortable. They gave him blood again, third time in a row. I stayed until 11:45pm, he was trying to go to sleep, but didn't because he kept opening his eyes, afraid I'd be gone. Finally he said, I should go home and he would sleep, and he said come back "before nine", in the morning. OK, I better go now.
August 11, 2005 (6:19 pm)
Morning:
Today John was tired, and said he didn't sleep because the nurse kept waking him every hour. I was there at 9. The doctors came in and discussed his case and his paralyzed vocal cord, and said that was a wait and see issue, and also that if he continued breathing on his own,(they are doing a straight 12 hours today), he should be out of ICU by around Monday. Either he isn't understanding time, or he has short term memory issues still, because he kept asking when I have to go and what time I would be back. About three times I told him, but he knew what time they took him off the vent this morning. 8 am. He asked for books last night, so I brought him in a few, and when I checked, he was in his chair reading. : )
Evening:
OK, he couldn't really read because he couldn't hold the book by himself. When I got there after work today, he was nearly asleep, being worn out from breathing on his own today for 12 hours in a row. I sat with him and let him fall asleep, messaging his legs and feet for him, and I think he will sleep fairly well tonight and left at 10:30. Wow, home before 11:30. They weighed him today, and he stood up holding this bar on the scale by himself. That's the good news. When John went in for his biopsy, he weighed 205 pounds. You have to know that from working out 2 hours a day, with cardio and weights he had a lot of muscle. He now weighs 170 pounds, with nary a muscle in site. I told him, it could be worse.
Today John was tired, and said he didn't sleep because the nurse kept waking him every hour. I was there at 9. The doctors came in and discussed his case and his paralyzed vocal cord, and said that was a wait and see issue, and also that if he continued breathing on his own,(they are doing a straight 12 hours today), he should be out of ICU by around Monday. Either he isn't understanding time, or he has short term memory issues still, because he kept asking when I have to go and what time I would be back. About three times I told him, but he knew what time they took him off the vent this morning. 8 am. He asked for books last night, so I brought him in a few, and when I checked, he was in his chair reading. : )
Evening:
OK, he couldn't really read because he couldn't hold the book by himself. When I got there after work today, he was nearly asleep, being worn out from breathing on his own today for 12 hours in a row. I sat with him and let him fall asleep, messaging his legs and feet for him, and I think he will sleep fairly well tonight and left at 10:30. Wow, home before 11:30. They weighed him today, and he stood up holding this bar on the scale by himself. That's the good news. When John went in for his biopsy, he weighed 205 pounds. You have to know that from working out 2 hours a day, with cardio and weights he had a lot of muscle. He now weighs 170 pounds, with nary a muscle in site. I told him, it could be worse.
August 12, 2005 (6:28 pm)
Oh my, so much good news. I talked to my daughter and I was at the hospital with John, and she told me Liz from Bassler called and they had had the fund raiser, and I told John about the fund raiser, then I asked him to guess how much money they made.. and he thought for a moment and said 500? And I said "close, Almost 2000!" and his eyes got so big! And we got so emotional.. that's one way to say we just cried. We are so grateful for all the help, and want to let everyone know. So our insurance for COBRA is payed for September(which is when John's insurance runs out), and 1605 goes into the trust fund into an account at the Edwardsville Bank i believe called the John F Nicol trust fund to pay for hospital bills, and anyone can add money into it. I will get the exact name for the site. You would think i would know wouldn't you.. but I don't.
It's been two weeks since the transplant. Yesterday was one month since he entered the hospital, and Sunday my one month parking pass expires. How time flies.
I had to do some laundry this morning(no dry towels), and get gas, and go to the bank, and didn't get into John's room til around 10:30, and he was upset and thought I wasn't coming. He said he needed me, and I figured out he needed me to stay with him today. So of course I did. And since the next two days are my days off, I'm hoping he is feeling better about me working on Monday. He was in his chair, and he had walked to the door today. He went on the T a little before 9 and the plan was to leave him on it for 24 hours. Also to walk again to the door or farther, do another eating test, and possibly move his feeding tube to his stomach. So when it was time to walk, he didn't want to, and he was breathing kind of hard, so they let him rest for a few minutes, then told him he couldn't sit down, till he walked to the door, so he walked real fast to the door, then sat. We were all laughing and the nurses said it was the fastest they had ever saw him move. His tube came out of his nose accidentally, and they discussed putting it into his stomach, but it's a surgical procedure and even though he wanted it done, the docters determined it would be more risk that way, so he had to have it reinserted into his nose. He hates it when it goes in. They only put it as far as his stomach so they can only feed him every four hours. But he let them put it there because he wanted his pain medication, and the stuff they are giving him now is just Percocet and they use the feeding tube to give it to him, and couldn't give it to him without a feeding tube. They decided against the eating test today, and will do it on Monday because they feel it's too soon, but still feel like his paralyzed vocal cords may be temporary. They will look this weekend to put in something so he can talk, he just needs to be breathing on his own, without the vent for 24 hours, which he is doing today. Also hopefully he will be out of ICU by Monday. His nurses last night let him sleep, and the night before he said the nurse woke him every hour. Tonight they said they would let him sleep also. We talked, and he can write now, and I talked alot more then he did, and told him some of the things he missed over the last 4 weeks. We said again we should marry in the hospital, and the nurse heard us, so she had the Chaplin call me, and the people who need to take care of that are off until Monday. I will recheck on these things Monday. I left at 10 because he was going to sleep(he said)and he wants me to come in at 9am. I left him fairly content.
It's been two weeks since the transplant. Yesterday was one month since he entered the hospital, and Sunday my one month parking pass expires. How time flies.
I had to do some laundry this morning(no dry towels), and get gas, and go to the bank, and didn't get into John's room til around 10:30, and he was upset and thought I wasn't coming. He said he needed me, and I figured out he needed me to stay with him today. So of course I did. And since the next two days are my days off, I'm hoping he is feeling better about me working on Monday. He was in his chair, and he had walked to the door today. He went on the T a little before 9 and the plan was to leave him on it for 24 hours. Also to walk again to the door or farther, do another eating test, and possibly move his feeding tube to his stomach. So when it was time to walk, he didn't want to, and he was breathing kind of hard, so they let him rest for a few minutes, then told him he couldn't sit down, till he walked to the door, so he walked real fast to the door, then sat. We were all laughing and the nurses said it was the fastest they had ever saw him move. His tube came out of his nose accidentally, and they discussed putting it into his stomach, but it's a surgical procedure and even though he wanted it done, the docters determined it would be more risk that way, so he had to have it reinserted into his nose. He hates it when it goes in. They only put it as far as his stomach so they can only feed him every four hours. But he let them put it there because he wanted his pain medication, and the stuff they are giving him now is just Percocet and they use the feeding tube to give it to him, and couldn't give it to him without a feeding tube. They decided against the eating test today, and will do it on Monday because they feel it's too soon, but still feel like his paralyzed vocal cords may be temporary. They will look this weekend to put in something so he can talk, he just needs to be breathing on his own, without the vent for 24 hours, which he is doing today. Also hopefully he will be out of ICU by Monday. His nurses last night let him sleep, and the night before he said the nurse woke him every hour. Tonight they said they would let him sleep also. We talked, and he can write now, and I talked alot more then he did, and told him some of the things he missed over the last 4 weeks. We said again we should marry in the hospital, and the nurse heard us, so she had the Chaplin call me, and the people who need to take care of that are off until Monday. I will recheck on these things Monday. I left at 10 because he was going to sleep(he said)and he wants me to come in at 9am. I left him fairly content.
August 12, 2005 (6:52 pm)
Thank you to the Collinsville High School Cheerleaders for raising over $300.00 during their car wash.
Thank you to Nicky and Dave Cates for their donation of two tickets to the Rams Game.
Thank you to Bassler for raising $1937.00 during their Basket Raffle.
Thank you to Kathleen Dockter for her donation of $100.00
Thank you to Nicky and Dave Cates for their donation of two tickets to the Rams Game.
Thank you to Bassler for raising $1937.00 during their Basket Raffle.
Thank you to Kathleen Dockter for her donation of $100.00
August 14, 2005 (7:28 pm)
This weekend has been a bit of a setback. Yesterday morning when I got there the nurse,(Susie, very nice), said he hadn't slept real well, and needed rest, had been on the T all night, and was going on the vent to sleep. I was actually quite happy as I got there at 9am,(John pointed out it was 9:01), but to get there that early I have to get up at 7:30aam. So I pulled up the trusty old green chair, got a pillow, and held John's hand and told him to sleep. So we slept till 11:30 which means about 1 1/2 hours with interruptions from nurses, respiratory therapy, blood draw technicians, medicine alarms, monitor alarms and general noise. They got him up to walk and he walked past his door, to the middle of the hall. That wore him out. So they walked him back to bed, after a couple of hours. They put him back on the T, as he had rested on the vent for about 5 hours, but he became agitated about it, and wanted to stay on the vent. He thought he was to tired to breath I think. He also appeared a bit despondent, and said he was depressed. So they gave him some Ativan, to relax him, and it knocked him out. So I slept next to him again. The storm woke us. He didn't know where he was, and was confused. I told him to sleep, and he woke later a little clearer. The medicines really effect him, also they think maybe the steroids are effecting him, as he is on Prednisone. They came in and said they think he is bleeding internally, so they wanted to do a test in the morning where they look in his stomach for ulcers. They thought they were going to have to pull his feeding tube and replace it. He freaked out, and got very upset, and the doctors said they wouldn't have to replace the tube, since it was already in his stomach from yesterday. He was concerned the ulcer was bacterial, and they said they would of course check, but thought maybe just a stress ulcer. They would have to stop his tube feedings until they did the procedure. So I went home around 9:30pm when he was asleep.
This morning I got there a few minutes before 9 and they had the machines in his room, ready for the procedure. I talked to the nurse about the propafol and because that is what they were going to give him, and talked to John, and they kicked me out. At 11:30 the doctor came out with pictures, and showed me the ulcer they found, and how they put in medicine and cauterized it. There is confusion about if it is in his stomach or small intestines, due to different doctors coming in and saying different things. They said his blood count was good at 28 and they were going to watch it for any drop, hold his feeding till they were sure of no bleeding, and continue to give him antibiotics. They also came in and did a bronchoscopy while he was sedated. He was sedated but not deeply, and told the nurse and myself that he was still awake when they did the procedure. The nurse said they gave him Fentanyl and something else, and had to give him a lot, then more for the bronchoscopy. He said no... he was awake. We don't know how. He slept off and on for most of the day, and stayed on the T but in bed. He seemed like himself towards evening and we watched the 4400 and DeadZone on TV, and they put him on the vent. The plan is to rest tonight and start again on the T in the morning and walk again, and continue to test for any bleeding, and possibly restart feeding him through his tube. The swallow test may be put on hold as is also leaving ICU tomorrow.
In perspective: Some things to note
He breaths at nearly 100% oxygenation on the T until he gets real tired then it drops sometimes to mid 90's, but when he sleeps on it, levels raise again.
When he went into the hospital he was on minimum of 6 liters of oxygen to stay in the high 80's low 90's. Now he is on around 10 liters with the vent, it just finishes some of his breaths so they are deep.
The T puts out around 10 liters of oxygen, and he does all the breathing on his own.
John received his lungs very quickly. One week on the list. I thought because he was so sick he got them so fast, but he doctors, and all the nurses keep telling me not really. For instance: They say one guy had a trache and used a portable vent for 3 months before his transplant. One guy lived in the hospital on a vent for 1 year waiting for lungs. One of the nurses father had a transplant, and lost so much weight waiting he was only about 100 pounds. Then afterward, he thought he still needed oxygen so they would put the cannula on no oxygen and give it to him anyway and let him think he was getting oxygen at night. Very physiological, like when John gets agitated and wants to go on the vent for help when he maybe doesn't need it yet.
This morning I got there a few minutes before 9 and they had the machines in his room, ready for the procedure. I talked to the nurse about the propafol and because that is what they were going to give him, and talked to John, and they kicked me out. At 11:30 the doctor came out with pictures, and showed me the ulcer they found, and how they put in medicine and cauterized it. There is confusion about if it is in his stomach or small intestines, due to different doctors coming in and saying different things. They said his blood count was good at 28 and they were going to watch it for any drop, hold his feeding till they were sure of no bleeding, and continue to give him antibiotics. They also came in and did a bronchoscopy while he was sedated. He was sedated but not deeply, and told the nurse and myself that he was still awake when they did the procedure. The nurse said they gave him Fentanyl and something else, and had to give him a lot, then more for the bronchoscopy. He said no... he was awake. We don't know how. He slept off and on for most of the day, and stayed on the T but in bed. He seemed like himself towards evening and we watched the 4400 and DeadZone on TV, and they put him on the vent. The plan is to rest tonight and start again on the T in the morning and walk again, and continue to test for any bleeding, and possibly restart feeding him through his tube. The swallow test may be put on hold as is also leaving ICU tomorrow.
In perspective: Some things to note
He breaths at nearly 100% oxygenation on the T until he gets real tired then it drops sometimes to mid 90's, but when he sleeps on it, levels raise again.
When he went into the hospital he was on minimum of 6 liters of oxygen to stay in the high 80's low 90's. Now he is on around 10 liters with the vent, it just finishes some of his breaths so they are deep.
The T puts out around 10 liters of oxygen, and he does all the breathing on his own.
John received his lungs very quickly. One week on the list. I thought because he was so sick he got them so fast, but he doctors, and all the nurses keep telling me not really. For instance: They say one guy had a trache and used a portable vent for 3 months before his transplant. One guy lived in the hospital on a vent for 1 year waiting for lungs. One of the nurses father had a transplant, and lost so much weight waiting he was only about 100 pounds. Then afterward, he thought he still needed oxygen so they would put the cannula on no oxygen and give it to him anyway and let him think he was getting oxygen at night. Very physiological, like when John gets agitated and wants to go on the vent for help when he maybe doesn't need it yet.
August 18, 2005 (8:47 pm)
It has been 5 weeks today since John has been in the hospital. Tomorrow will be three weeks since his transplant. John has spent 33 days in ICU.
On Wednesday, John was excited, they were coming in to downsize the trache to allow more airflow around it, and more through his mouth and nose, to see if he could talk. They also told him they had to replace the tube they were using to feed him with a smaller one. He didn't like that, but the new one would be smaller, and more comfortable.. as tubes in your nose go that is. His blood work was good so far, and the doctor told me that they had him on a dose of blood thinner they were comfortable with. It's a fine line were to much of it will cause bleeding again from the ulcer in his small intestines/stomach area or more ulcers and not enough will allow the blood clots in his legs to get larger. He walked to the third turn in ICU and was moving himself in the chair, when he was slipping, pretty well. The plan was to walk again then do the tube/trache work on him. The order for the trache downsizing was 2 to 3pm. It was 12:30 so I left to go to work to take care of some business, and I arrived back in his room at 2, and he was in bed already, and they said, they just finished everything. I looked at John and he "Where have you been woman?". He now has a little cap like device that fits over his trache and allows the air to be channeled better to speak. He was SO HAPPY to be able to talk. They moved him out of ICU to the Observation Unit on the 7th floor. This is actually where he started. Usually transplant patients end up there the day after there surgery, sometimes two. Eventually he gets a room. YEA! Good Day.
On Thursday morning they removed the catheter. They told him he had 4 hours to go on his own or it was going back in. He said, "close the curtain". He will not be getting another catheter. He came in on 50% oxygen, and they turned it down to 35% because his saturation was 100%. If you breath regular air you get 21% oxygen. After several hours they turned it down again to 28%, which is equivalent to about 2liters of oxygen and when they turn it down again, it will be to only warm and moisturize the air, to simulate breathing through his mouth. He walked 350 yards today. They know that due to walking down a hallway and back, and he only rested twice in a chair. He walked twice and went further each time. He is scheduled for a broncoscopy and biopsy in the morning to check for rejection in the lungs. They need to sedate him, so they will try and let him walk first. I don't know what sedation they will use, so I don't know how he will wake up. We shall see.
On talking to John, he told me what he remembered. He remembered the mask and cannula, but not the mask being strapped on his face that forced oxygen into his lungs. The last thing he remembers is trying to each with his mask. Then last Sunday, when he got to look out the windows. He didn't remember he had IPF until around Tuesday he says. He dreamed. He dreamed me and the kids were outside the hospital waiting for him to get out. His mom was behind a curtain. His cousin Kathy from Florida had came to see him. He was in a hospital, a bad one, and he needed to leave, or he would lose his job. I came in once in awhile, once to tell him to breath slow and deep, and once to tell him he had new lungs, that they worked good, and this irritated him he said due to knowing he didn't.
So he thought I was his cousin when he didn't know me those times. He heard me talk to him those times, and the one day last week I heard him use the exact phrase I used to tell him to be calm, and that he had good lungs, and could breath, when talking to a nurse. He repeated that, "These lungs work good", in the exact way I had been whispering and telling him when he would get agitated, when he was sedated before they woke him up. I thought at the time, that yes, his subconscious had heard me, and at least one nurse was wrong. I still think so.
I never mentioned certain things, like the doctors were not sure if John had suffered a stroke during his last 'crash' and when he woke up the first time blind, and the left side of body weaker, and even when he first smiled that day, the left side of his mouth was weaker it was hard to tell if he had. It looked like he might have. He wasn't in his right mind due to medications for a while, and that didn't help any diagnosis and the doctor at one point said they would have to wait and see to tell if he had suffered a stroke, but he didn't think so. He is doing better mentally, physically, and he beat me plying word jumble on this little spell checker he was using to spell words to us when I couldn't always read his lips. Brit appeared to be the best lip reader, even better then me or his sister. He has told me he loved me, asked me to marry him, and set a date of September 10, (which is our 11th anniversary). A date he says he will be out of the hospital for.
He is ready for visitors I believe, and probably if you realize he lost a lot of weight, and is weak, and has a trache... well, he gets impatient to go home, and seeing friends/family would cheer him up.
On Wednesday, John was excited, they were coming in to downsize the trache to allow more airflow around it, and more through his mouth and nose, to see if he could talk. They also told him they had to replace the tube they were using to feed him with a smaller one. He didn't like that, but the new one would be smaller, and more comfortable.. as tubes in your nose go that is. His blood work was good so far, and the doctor told me that they had him on a dose of blood thinner they were comfortable with. It's a fine line were to much of it will cause bleeding again from the ulcer in his small intestines/stomach area or more ulcers and not enough will allow the blood clots in his legs to get larger. He walked to the third turn in ICU and was moving himself in the chair, when he was slipping, pretty well. The plan was to walk again then do the tube/trache work on him. The order for the trache downsizing was 2 to 3pm. It was 12:30 so I left to go to work to take care of some business, and I arrived back in his room at 2, and he was in bed already, and they said, they just finished everything. I looked at John and he "Where have you been woman?". He now has a little cap like device that fits over his trache and allows the air to be channeled better to speak. He was SO HAPPY to be able to talk. They moved him out of ICU to the Observation Unit on the 7th floor. This is actually where he started. Usually transplant patients end up there the day after there surgery, sometimes two. Eventually he gets a room. YEA! Good Day.
On Thursday morning they removed the catheter. They told him he had 4 hours to go on his own or it was going back in. He said, "close the curtain". He will not be getting another catheter. He came in on 50% oxygen, and they turned it down to 35% because his saturation was 100%. If you breath regular air you get 21% oxygen. After several hours they turned it down again to 28%, which is equivalent to about 2liters of oxygen and when they turn it down again, it will be to only warm and moisturize the air, to simulate breathing through his mouth. He walked 350 yards today. They know that due to walking down a hallway and back, and he only rested twice in a chair. He walked twice and went further each time. He is scheduled for a broncoscopy and biopsy in the morning to check for rejection in the lungs. They need to sedate him, so they will try and let him walk first. I don't know what sedation they will use, so I don't know how he will wake up. We shall see.
On talking to John, he told me what he remembered. He remembered the mask and cannula, but not the mask being strapped on his face that forced oxygen into his lungs. The last thing he remembers is trying to each with his mask. Then last Sunday, when he got to look out the windows. He didn't remember he had IPF until around Tuesday he says. He dreamed. He dreamed me and the kids were outside the hospital waiting for him to get out. His mom was behind a curtain. His cousin Kathy from Florida had came to see him. He was in a hospital, a bad one, and he needed to leave, or he would lose his job. I came in once in awhile, once to tell him to breath slow and deep, and once to tell him he had new lungs, that they worked good, and this irritated him he said due to knowing he didn't.
So he thought I was his cousin when he didn't know me those times. He heard me talk to him those times, and the one day last week I heard him use the exact phrase I used to tell him to be calm, and that he had good lungs, and could breath, when talking to a nurse. He repeated that, "These lungs work good", in the exact way I had been whispering and telling him when he would get agitated, when he was sedated before they woke him up. I thought at the time, that yes, his subconscious had heard me, and at least one nurse was wrong. I still think so.
I never mentioned certain things, like the doctors were not sure if John had suffered a stroke during his last 'crash' and when he woke up the first time blind, and the left side of body weaker, and even when he first smiled that day, the left side of his mouth was weaker it was hard to tell if he had. It looked like he might have. He wasn't in his right mind due to medications for a while, and that didn't help any diagnosis and the doctor at one point said they would have to wait and see to tell if he had suffered a stroke, but he didn't think so. He is doing better mentally, physically, and he beat me plying word jumble on this little spell checker he was using to spell words to us when I couldn't always read his lips. Brit appeared to be the best lip reader, even better then me or his sister. He has told me he loved me, asked me to marry him, and set a date of September 10, (which is our 11th anniversary). A date he says he will be out of the hospital for.
He is ready for visitors I believe, and probably if you realize he lost a lot of weight, and is weak, and has a trache... well, he gets impatient to go home, and seeing friends/family would cheer him up.
August 20, 2005 (5:14 am)
John had a broncoscopy and biopsy at around 1:30 yesterday. They didn't get back into the room until 3:30pm. He was awake, and told me he was awake for about the last 45 seconds of the procedure, and raised his hand during it to let them know, and he heard them telling him they were almost done. They also were checking his vocal cords, and he said the doctors told him they were working. I didn't talk to anyone, but John kept asking for food. They assured him it wouldn't happen until at least the morning. He did walk in the morning, and he got his bath early before I was there, even though he asked them to wait and let me do it(I have been doing it for most of the time). They made him help. He has been a little argumentative, and stubborn, about the swallow thing, and what exercise he should be doing. His nurses tell him he could/should be exercising his legs and arms while in bed, but he keeps insisting he will be fine once he goes home to his exercise equipment, and since he didn't hear it from the physical therapist he is ignoring it. I suspect the Prednisone. has a lot to do with his moods, and it has a lot of side affects. He is also quite frustrated at not being able to do more, and wanting to go home so badly. He isn't quite as emotional since they lowered the dose, but still has some insomnia, and mood swings. He also has no trouble ordering me around since he can talk. I did get him to say please when he wants his legs/feet massaged. That's progress.
Someone mowed my grass. THANK YOU! I don't know who did it. It should have been josh, but school started, and he of course has didn't get to it. I can't even tell you if it needed mowed.
I am feeling overwhelmed today. With John moody/argumentative/frustrated at not being able to go home, but still wanting me at the hospital for more then 12 hours, it makes for a long day. My kids think I've abandoned them, and I think they could help out more. One seems depressed and won't quit sleeping, and one is nowhere in site. I go from frustration to feeling guilty. Maybe that's how John feels. I need time to do bills, bank, get gas even and it cuts into my sleep time, or worse my hospital time. I need to find out about John going home and medicines, exercise and therapy and I'm afraid they are suddenly going to do all this education when I finally have to go back to work. I have to disinfect the house. It has to be cleaned and disinfected before he comes home. Dusted, scrubbed, door knobs, railings, telephone, floors, bathrooms, counters, cabinets, refrigerator and freezer cleaned out and everything cleaned with 1 part bleach, 9 parts water, or a disinfectant that is environmentally friendly. Which i now have to go get... sometime. He can get an infection just from not washing a can before he uses it. Drinking water and ice needs to be filtered. He can't be around a lot of dust like no changing vacuum bags, or furnace filters, and he now he has to be more careful in the sun, and in the pool. No babies without protection in the pool(absolutely no peeing in the pool kids!), and sunscreen. Luckily we filter our drinking water, but still need to do the ice. I have to wipe down the bed, and clean the laundry area the kids have trashed. I'm supposed to be going through bags of clothes and stuffed animals for the yard sale next week, and get Brit's bunk beds out of her room also for it, and the place is constantly a mess.
John will have to wear a mask when in crowds, no sick people at the house, and even not a lot of people for the first couple of months. No one can use our bathroom, including our kids(they have one they can use), he needs to wash cans, food, not eat after anyone, and everyone has to wash hands when they come in. I will quit whining now, as writing it down makes me feel better. It's strange that the little stuff would get to me so much, after all I've been through with him, and considering he was on his deathbed a couple of weeks ago. I'm thinking.... maid service. Now I really feel better!
Here is something really scary: As little as one year ago they didn't list transplant patients by need, but they went on a list and waited until their name came around to the top. No matter how long it took. They just changed the criteria recently, within the last twelve months sometime, to incorporate need and how sick you are as one of the determining factors as to where your name appears on the list. Last year, even though John was so sick, he wouldn't have been moved up on need. John would certainly have died within a week of going on the oscillator probably waiting for lungs, if this hadn't have changed so recently.
John needs surgery for a Hiatal Hernia that is contributing to his acid reflux. They will wrap some stomach around the esophagus and food will go in, a bit harder, but have more trouble coming out. They will do it in about 4 to 6 weeks after he loses 10 pounds or so. This surgery will also help in maintaining or even helping lung function. It will also help stop any rejection. He also has some kidney trouble due to diabetes. But this seems under control for the moment. July 28, 2010 we go for 5 year checkup and will find out better how the lung function is doing and if the rejection is under control.
Someone mowed my grass. THANK YOU! I don't know who did it. It should have been josh, but school started, and he of course has didn't get to it. I can't even tell you if it needed mowed.
I am feeling overwhelmed today. With John moody/argumentative/frustrated at not being able to go home, but still wanting me at the hospital for more then 12 hours, it makes for a long day. My kids think I've abandoned them, and I think they could help out more. One seems depressed and won't quit sleeping, and one is nowhere in site. I go from frustration to feeling guilty. Maybe that's how John feels. I need time to do bills, bank, get gas even and it cuts into my sleep time, or worse my hospital time. I need to find out about John going home and medicines, exercise and therapy and I'm afraid they are suddenly going to do all this education when I finally have to go back to work. I have to disinfect the house. It has to be cleaned and disinfected before he comes home. Dusted, scrubbed, door knobs, railings, telephone, floors, bathrooms, counters, cabinets, refrigerator and freezer cleaned out and everything cleaned with 1 part bleach, 9 parts water, or a disinfectant that is environmentally friendly. Which i now have to go get... sometime. He can get an infection just from not washing a can before he uses it. Drinking water and ice needs to be filtered. He can't be around a lot of dust like no changing vacuum bags, or furnace filters, and he now he has to be more careful in the sun, and in the pool. No babies without protection in the pool(absolutely no peeing in the pool kids!), and sunscreen. Luckily we filter our drinking water, but still need to do the ice. I have to wipe down the bed, and clean the laundry area the kids have trashed. I'm supposed to be going through bags of clothes and stuffed animals for the yard sale next week, and get Brit's bunk beds out of her room also for it, and the place is constantly a mess.
John will have to wear a mask when in crowds, no sick people at the house, and even not a lot of people for the first couple of months. No one can use our bathroom, including our kids(they have one they can use), he needs to wash cans, food, not eat after anyone, and everyone has to wash hands when they come in. I will quit whining now, as writing it down makes me feel better. It's strange that the little stuff would get to me so much, after all I've been through with him, and considering he was on his deathbed a couple of weeks ago. I'm thinking.... maid service. Now I really feel better!
Here is something really scary: As little as one year ago they didn't list transplant patients by need, but they went on a list and waited until their name came around to the top. No matter how long it took. They just changed the criteria recently, within the last twelve months sometime, to incorporate need and how sick you are as one of the determining factors as to where your name appears on the list. Last year, even though John was so sick, he wouldn't have been moved up on need. John would certainly have died within a week of going on the oscillator probably waiting for lungs, if this hadn't have changed so recently.
August 21, 2005 (3:29 am)
John got to eat jello yesterday. It was a pretest of sorts. He had a few bites of red, then he would get suctioned, to see if any went into his lungs. It didn't appear to. So later in the afternoon he ate some green jello, over half of the little cup they bought, and suctioned again. No green or red jello in his lungs. So they may give him some more today. They also might move him to a room today, and actually have one reserved for him, they said because it has a view of forest park. Room 7115, the room is right next to the Observation Unit and is already empty just waiting for him. They will do another official swallow test and downsize his trache again on Monday to one that is only the size of a straw then remove it some time this week completely. He can't wait, but is still weak. He walked over 350 feet yesterday before sitting down. He also said please and thank you, and that was the best part of the day, except for maybe the "I love you" part.
My kids told me they would clean today, and I told Josh he could come to the hospital later with Grandma. Everyone had a better day yesterday then the day before, and today should be even better. I am going to actually print this blog today, and let John read it.
Believe it or not, I just found out about the comments to this page. Thank you to everyone who sent me comments, and I didn't reply, as I only just found them. I'll print them too. I am also printing out the emails I receive and letting him read them. It makes me cry and it will make him cry too probably. God Bless you.
John is home! I haven't been able to post, but will try this evening.
Well we went to see Dr. Marsh, the doctor that did the lung transplant and he also mention Dr. Cozier who was the doctor who actually saved John's life the night he crashed and he is the doctor that put him on the oscillator. That brought back awesomely terrible memories.My kids told me they would clean today, and I told Josh he could come to the hospital later with Grandma. Everyone had a better day yesterday then the day before, and today should be even better. I am going to actually print this blog today, and let John read it.
Believe it or not, I just found out about the comments to this page. Thank you to everyone who sent me comments, and I didn't reply, as I only just found them. I'll print them too. I am also printing out the emails I receive and letting him read them. It makes me cry and it will make him cry too probably. God Bless you.
August 21, 2005 (7:35 pm)
Morning:
John is in a room. Finally. Moved today around 2pm. 7115 on the 7th floor of the Queeny Tower, and he has a phone. Call him between 7am and 9pm at 314-362-6397. He still has his trache but can talk. It's being downsized tomorrow and he will get his swallow test. He was weighed today and he weighed 164 pounds. Hopefully he will be eating soon.
Evening:
John got to eat dinner! They removed his tube from his nose and he is actually eating and drinking(that's right, he couldn't even drink). He passed his swallow test. His biopsy cam e back negative for rejection. His ultrasound on his legs came back so far showing no blood clots. He got to take his first shower in 39 days. Over 5 weeks. With a lot of help from me and sitting down of course. OK. A lot of help from me. He was very happy to get his hair washed. They are still giving him insulin shots, due to high blood sugar, but the hope is it will go down as he eats more, and exercises. He weighed 163 pounds and hopefully will gain weight now that he can eat. His doctors say he could actually be home by the end of the week. This is truly a miracle.
I need to add something to one of my earlier posts about how they do the transplant lists. I had said that as soon as last year they didn't place people on a transplant list by need, but they waited until their name came up on the list. Well it didn't change last year. It changed this year. In May. Two months before John's lungs stopped working.
If John had went through this same thing two months earlier, he probably wouldn't have survived due to being placed on a list and then having to wait. And wait. Need didn't really play a part in how you got organs, and the wait could end in death.
# More than 85,000 people are currently on the waiting list for an organ; more than 6,000 people per year are dying while waiting. 'United Network for Organ Sharing, March 14, 2004 '
# The waiting list for organs grows by an average of 19 percent every year. 'United Network for Organ Sharing. '
# In 2003 80% of transplant list candidates died waiting for organs. -Emery P. Dalesio / Associated Press
Waiting list candidates 89,109 as of today 12:51am
Transplants January - May 2005 11,514 as of 08/12/2005
Donors January - May 2005 5,923 as of 08/12/2005
John is in a room. Finally. Moved today around 2pm. 7115 on the 7th floor of the Queeny Tower, and he has a phone. Call him between 7am and 9pm at 314-362-6397. He still has his trache but can talk. It's being downsized tomorrow and he will get his swallow test. He was weighed today and he weighed 164 pounds. Hopefully he will be eating soon.
Evening:
John got to eat dinner! They removed his tube from his nose and he is actually eating and drinking(that's right, he couldn't even drink). He passed his swallow test. His biopsy cam e back negative for rejection. His ultrasound on his legs came back so far showing no blood clots. He got to take his first shower in 39 days. Over 5 weeks. With a lot of help from me and sitting down of course. OK. A lot of help from me. He was very happy to get his hair washed. They are still giving him insulin shots, due to high blood sugar, but the hope is it will go down as he eats more, and exercises. He weighed 163 pounds and hopefully will gain weight now that he can eat. His doctors say he could actually be home by the end of the week. This is truly a miracle.
I need to add something to one of my earlier posts about how they do the transplant lists. I had said that as soon as last year they didn't place people on a transplant list by need, but they waited until their name came up on the list. Well it didn't change last year. It changed this year. In May. Two months before John's lungs stopped working.
If John had went through this same thing two months earlier, he probably wouldn't have survived due to being placed on a list and then having to wait. And wait. Need didn't really play a part in how you got organs, and the wait could end in death.
# More than 85,000 people are currently on the waiting list for an organ; more than 6,000 people per year are dying while waiting. 'United Network for Organ Sharing, March 14, 2004 '
# The waiting list for organs grows by an average of 19 percent every year. 'United Network for Organ Sharing. '
# In 2003 80% of transplant list candidates died waiting for organs. -Emery P. Dalesio / Associated Press
Waiting list candidates 89,109 as of today 12:51am
Transplants January - May 2005 11,514 as of 08/12/2005
Donors January - May 2005 5,923 as of 08/12/2005
August 27, 2005 (7:06 am)
John is home! I haven't been able to post, but will try this evening.
August 28, 2005 (6:37 pm)
I haven't really had a chance to post before now, as I've returned to work. I went to work on Thursday. They took out the trache on Friday, and the pick line also, the IV line that went from his arm to his heart that could stay in for up to a year. So he came home Friday with not tubes or IV's, but with a tracheotomy whole in his throat that is supposed to close by itself. He weights 163 pounds. He is on insulin but hopefully that will change.
Wednesday night while I was at the hospital Brittany, Josh, Emily, Mellisa, and Erica started cleaning my house. They probably would have gotten even more done if the power hadn't went out for several hours due to the storm. THANK YOU VERY MUCH!
Thursday while I was at the hospital then at work, Kelly, Martha, John, Joan, Jim, Nicky, and Brittany and Josh(after school) came over and cleaned my house. They did a wonderful job. Kelly was there from 8am till almost midnight, (let's you know something about the state of my house doesn't it?), she even disinfected the disinfectants! THANK YOU VERY MUCH!
This weekend was the yard sale in Fairview Heights and I believe they made around $400.00! Even with the major thunderstorm. There will be another yard sale at Nicky's on September 16th. I will get the address to post here.
John actually got on the exercise bike for 15 minutes yesterday, and although is using a walker, is getting around pretty good. He starts rehab on Monday and goes 5 days a week. I am going to post a picture of him.
Wednesday night while I was at the hospital Brittany, Josh, Emily, Mellisa, and Erica started cleaning my house. They probably would have gotten even more done if the power hadn't went out for several hours due to the storm. THANK YOU VERY MUCH!
Thursday while I was at the hospital then at work, Kelly, Martha, John, Joan, Jim, Nicky, and Brittany and Josh(after school) came over and cleaned my house. They did a wonderful job. Kelly was there from 8am till almost midnight, (let's you know something about the state of my house doesn't it?), she even disinfected the disinfectants! THANK YOU VERY MUCH!
This weekend was the yard sale in Fairview Heights and I believe they made around $400.00! Even with the major thunderstorm. There will be another yard sale at Nicky's on September 16th. I will get the address to post here.
John actually got on the exercise bike for 15 minutes yesterday, and although is using a walker, is getting around pretty good. He starts rehab on Monday and goes 5 days a week. I am going to post a picture of him.
September 11, 2005 (8:41 pm)
Yesterday was our 11th anniversary. So we got married. YES! We are now legally married. It was a wonderful ceremony, and a very special celebration afterward at John's cousin's house, Penny. His cousin's provided a beautiful cake, food, guest book, picture book, and even glasses for the toast. It couldn't have been a more perfect day.
John is going to rehab every morning. He gets his labs drawn twice a week, to check his levels of his anti-rejection drugs, and steroids, and blood counts, and just about everything else you can think of. He sees the doctor every other week now. He is down to two insulin shots a day. He weighs 165.8 pounds. He is walking without the walker, and he is only a little slow, and he can stand pretty long before he gets tired. He stood for the whole ceremony and for several pictures afterward before he had to sit and rest.
I am working full time again, but his parents are getting him to his rehab and labs most days. I don't think we would ever have made it through this without family.
There is a yard sale at Nicky's house in Collinsville this Saturday. I will be working probably, but I'm sure John will stop by. I want to thank everyone for everything so far, and John will be writing out some thank you cards soon, now that his writing is getting easier for him.
The benefit is coming along nicely, and there is a raffle and I will get details and post them.
John is going to rehab every morning. He gets his labs drawn twice a week, to check his levels of his anti-rejection drugs, and steroids, and blood counts, and just about everything else you can think of. He sees the doctor every other week now. He is down to two insulin shots a day. He weighs 165.8 pounds. He is walking without the walker, and he is only a little slow, and he can stand pretty long before he gets tired. He stood for the whole ceremony and for several pictures afterward before he had to sit and rest.
I am working full time again, but his parents are getting him to his rehab and labs most days. I don't think we would ever have made it through this without family.
There is a yard sale at Nicky's house in Collinsville this Saturday. I will be working probably, but I'm sure John will stop by. I want to thank everyone for everything so far, and John will be writing out some thank you cards soon, now that his writing is getting easier for him.
The benefit is coming along nicely, and there is a raffle and I will get details and post them.
September 21, 2005 (6:20 pm)
John's birthday was Sunday. He is 42 years old, and happy to be this old I'm sure. Saturday was the yard sale at Nickie's and I didn't get to stop by since I had to work this weekend. John still wasn't driving yet so he didn't get to go over there either. Monday he had his first broncoscopy since being released from the hospital. He had several in the hospital including one at his 3 week anniversary of the lung transplant to check for rejection. This one also should be checking for rejection and we see the doctor today for results. I went with him in the morning for the procedure, then was able to stay until they brought him into recovery, before I had to leave for work. His mom brought him home, and he slept most of the day. Yesterday I was off work, and we went to the Walmart, and John drove home. It's only a couple of blocks, but he wanted to drive. I drove into rehab today, but Friday it will be 8 weeks since his transplant, and he feels he is ready, so we will talk to the doctor or coordinator about him driving, and maybe exercising. He weighs about 170 pounds, and is still on insulin, but they reduced the amount during the day he takes. The problem is that his blood sugar is mostly normal or even low except in the afternoon/early evening hours when it can get really high. He takes a long acting insulin for that, but it doesn't seem to be doing it by itself, so he also needs a shorter acting insulin, but that can make his sugar go very low at night. So when that happens we get up, and feed him something to bring it back up. Low blood sugar is a bigger concern to the doctors the high blood sugar. He isn't have tremors as bad, and is becoming accustomed to most of his medications, but there are still a lot of them, and probably always will be.
I can't believe we are married, and i still get so scared sometimes. It's VERY hard to believe that he has lungs, that aren't his own, that saved his life. But the reality of rejection, and statistics are just frightening. We have to really not dwell on facts sometimes, and just trust God and the doctors and hope for an almost normal life again. But realistically, it will never be the same. There will always be doctor's and that's OK, and the appreciation of life, and hope that we have alot of years left together. He will make a wonderful grandfather.
I can't believe we are married, and i still get so scared sometimes. It's VERY hard to believe that he has lungs, that aren't his own, that saved his life. But the reality of rejection, and statistics are just frightening. We have to really not dwell on facts sometimes, and just trust God and the doctors and hope for an almost normal life again. But realistically, it will never be the same. There will always be doctor's and that's OK, and the appreciation of life, and hope that we have alot of years left together. He will make a wonderful grandfather.
October 13, 2005 (5:48 pm)
John is doing Great! He has another broncoscopy scheduled for Friday morning. This will be his second since his release from the hospital, and this one signifies his 3 month marker. If this broncoscopy comes back negative for rejection, we can put away fears of CHRONIC rejection until after 5 years or so. There are other forms of rejection they will be watching for, but those are more treatable. John was going through a period of nausea right after his last broncoscopy, and it got severe. They stopped the Cellcept, one of his rejection drugs, temporarily, to ascertain if that was the culprit. It was. So now he will be taking the Cellcept coated specially to avoid nausea.. the problem? INSURANCE. They have been giving us trouble about meds ever since he got out of the hospital. His insurance provider changed right before all this happened, and this insurance company has a list of meds, and is very picky about quantity. Some meds could only be picked up 15 days at a time, some are not covered and had to be switched, even his diabetic kit had to be changed. They still haven't provided the spirometer he needs (a special device he breaths into every day to determine lung function and help figure out if he is having rejection), and we have been waiting for this device since he got out of the hospital. So they say they will only cover this medication at a SPECIALTY Pharmacy. ??? This is a medication he needs For the rest of his life! Without the medication, he will go into rejection of the transplanted organ. So now we are trying to figure out where or even what a specialty pharmacy is.
The Benefit is counting down until the day! OCTOBER 22, 2005 @ 7:00pm. We are still looking for donations from businesses and individuals for the silent auction, and for food, and actually anything you can think of, like baskets, and gift certificates. Tickets can be purchased at the door for $15 and with that you get food and drink. There will be dancing and karaoke, a raffle for a shotgun, and silent auction. So come on out for a fun evening to show your support for John and his family, and don't forget... SIGN THE BACK OF YOUR LICENSE FOR ORGAN DONATION!
The Benefit is counting down until the day! OCTOBER 22, 2005 @ 7:00pm. We are still looking for donations from businesses and individuals for the silent auction, and for food, and actually anything you can think of, like baskets, and gift certificates. Tickets can be purchased at the door for $15 and with that you get food and drink. There will be dancing and karaoke, a raffle for a shotgun, and silent auction. So come on out for a fun evening to show your support for John and his family, and don't forget... SIGN THE BACK OF YOUR LICENSE FOR ORGAN DONATION!
May 5, 2006 (10:08 am)
Be an organ donor! To sign up to donate your organs go to this site: http://www.shareyourlife.org/
Thursday August 4, 2005 (9:40 pm)
John needs surgery for a Hiatal Hernia that is contributing to his acid reflux. They will wrap some stomach around the esophagus and food will go in, a bit harder, but have more trouble coming out. They will do it in about 4 to 6 weeks after he loses 10 pounds or so. This surgery will also help in maintaining or even helping lung function. It will also help stop any rejection. He also has some kidney trouble due to diabetes. But this seems under control for the moment. July 28, 2010 we go for 5 year checkup and will find out better how the lung function is doing and if the rejection is under control.
