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| Sunday July 31, 2005 |
| 07.31.05 (7:28 pm) [edit] |
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 paralized so much. He can't see yet, due to not using his eyes, and the paralizing 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 alot, 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 breath 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 depravation will effect how he recovers, or how much he recovers, or his muscles, or something. He will recieve 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.
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| Saturday July 30, 2005 |
| 07.30.05 (5:28 pm) [edit] |
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Special Note. I want to thank everyone for all the prayers, support, food, finacial 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, docters, nurses, and employess at the hospital have been suportive, and noticed when I was able to finally smile. As if I didn't already cry enough.....
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| Saturday, July 30, 2005 |
| 07.30.05 (2:17 pm) [edit] |
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 hosipital 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 sstunned 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 til 6 on my own, sitting straight up.
Surgery would be at 8 i was informed. At 7:15, the docters started coming in, due to noone knowing how they were going to transport him to the O.R. with his oscilator, 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 docters touched the oscilator, 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 layed 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 docter came in to talk to us. He was doing well, and recieved two lungs. One of them the docter 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 Nitrus Oxide, and and was still on the vent with a trach, 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 preasure 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 desaturate, not breath, and even worse.
Now, We Just Need Him To Wake Up, So Keep Praying.
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| OMG |
| 07.28.05 (8:26 pm) [edit] |
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!!!!!!!!!
Theyhavelungstheyhavelung stheyhavelungs
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, its
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
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| Thursday, July 28, 2005 |
| 07.28.05 (5:24 pm) [edit] |
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 paralizing drugs, and was doing well. There were incidents. One nurse let him wake up, and didn't stay in the room. He became aggitated, and his blood ox would fall to around 70-80% and his heart rate would go up. I became upset, and the docter 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 trach, but he still didn't become calm. She thought he was just aggitated, and we talked to him to calm him, and she told him I was there. He already new, 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 docters, respetory therepists, 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 trach(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 docter 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 ocillalator came up. His parents and Brit arrived in the mean time. Docters 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 paralize 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 docters. It seems, there 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 paralizing drugs again. He is stable, still critical, and if there is something worse then critical, maybe he is that. The docters(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 docter 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.
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| Update |
| 07.28.05 (11:11 am) [edit] |
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 finnaly 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 occilator (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 its 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
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| Tuesday, July 27, 2005 |
| 07.26.05 (7:28 pm) [edit] |
John is now on the transplant list. He went on it Friday, and yesterday, evidently, lungs had already become available. The docter 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 paralized), and he tolerated it very well. Yesterday his nurse was Cindy, who was very good. He is now sedated, but not paralized, 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 docters think his numbers will remain stable, and right now, it doesn't look like his lungs can accomidate 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.
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| Sunday, July 24, 2005 - Critical condition |
| 07.24.05 (6:10 pm) [edit] |
John is still in Critical, but stable condition, and they try to drop the paralizing drugs, but then it becomes a strain on his lungs to do the work, he becomes aggitated, 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 paralizing 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 sinues. 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 docters make their rounds, and see if they try to take him off the Rock(Rocuronium, the drug being used to paralize 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.
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| Saturday, July 23, 2005 - Critical condition |
| 07.23.05 (5:51 am) [edit] |
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 docters 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 heperin, and it's probably the least of the worries. They discovered that he had a mild heart attack during the intibation of the ventalator. 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, hense the numbers dropping. He is now on Nitus oxyid for his heart/lungs though the vent, and it's allowing his heart lungs to function more easily. He is being kept sedated, and paralized 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 reamain 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 supercede 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 finncially 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.
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| BENEFITING JOHN NICOL |
| 07.22.05 (5:23 am) [edit] |
[line]All info benefiting John Nicol will be placed here************************* ***
Benefiting JOHN NICOL.
************************* ***
*BASKET RAFFLE @ BASLER*
The employees of Basler(John's employer), in Highland, will hold a special raffle for John. The drawing wll 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 Mens 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
************************* ***
*YARD SALE*
info - August 26 & 27 at 100 Joseph Drive in Fairview Heights, Illinois.
************************* ***
*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.
************************* ***
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
************************* ***[line]
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| Friday, July 22, 2005 |
| 07.22.05 (5:11 am) [edit] |
I slept 10 hours in my own bed, uninterupted, 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 erractic. 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 eligable, because Johnny and I are not married. OMG! We have been living together for over 10 years, and own a house together! Our anniversay is Sept. 10, and it will be 11 years. I can try for a leave of absince. This is so maddening. The reason he didn't want to marry, is finacial. The kids being mine, give us more money not married, and less taxes to pay, and for college, and it's just finacially harder to be married. But when it looked like he would be on diablility, 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 woouldn'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
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| Thursday, July 21, 2005 |
| 07.21.05 (3:28 pm) [edit] |
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It's done, the tracheoscopy. He had a few incidents on the ventalator 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 ventalator hooked up directly to the trach. 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 docter 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 trach, to do that, and even remove it, and the insistion will close. When I left, he was resting and his stats were up, and steady. I am off to sleep.
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| Wednesday, July 20, 2005 |
| 07.20.05 (5:33 pm) [edit] |
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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 discribe the feeling of watching someone not able to breath, feeling like he is suffocating. It's impossible to discribe the Horror of watching him be intabated, 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 docters and nurses)said they usually make everyone leave, but I suppose since I'm pretty perment 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 depravation. 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 first hand the byplay of new docters(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.
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| Wednesday, July 20, 2005 |
| 07.20.05 (3:48 pm) [edit] |
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 breath, 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 ventalator. He got pain pills, and ativan, and he slept relitivly peacefully, only dropping on occation, and coughing sometimes, and he recieved 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 ventalator, when docters aren't there so much, and there was an alternative to the mask. They could put him on the ventalator, for 24 hours, and then tomorrow do a traciotomy 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 new 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-Cardiothorasic Intensive Care
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| Tuesday, July 19, 2005 |
| 07.19.05 (6:57 am) [edit] |
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 times 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/claustropho bic attack, so they are now giving him something for that, that helps keep him calm. The machine forces 100% oxygen into his lungs. Everytime 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 aggresive 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 docters 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. Inflamation they are treating with steriods, 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 docter 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 apperatus, 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 docter didn't want to treat John without it. to imperical. I don't know. They talk like they can use more aggresive treatments, due to some inflamation.. yet they are using steriods. 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 docter talked at our last visit before John went on oxygen like it was to 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 breath 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.
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| Sunday, July 17, 2005 |
| 07.17.05 (7:49 am) [edit] |
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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 cannella. His saturation was dropping and they had him on the max for the after care area, and decided to move him to ICU where he could get more oxygen if needed, and more importantly, a ventalator, 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 ventalator, and still don't and that will be the final step. He is now on 25 liters of oxygen, and they belive he has an infection or phnemonia 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 antibotics, and steriods 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.
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| Saturday, July 16, 2005 |
| 07.16.05 (3:56 am) [edit] |
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 schedualed 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 excellant 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 apperatus(used to help prevent phnemonia) and his levels went down to 83-85. They turned up his oxygen to 12 and gave him a hose with a special resevoir 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 sometime. I am off to bed, and back to the hospital in the morning.
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| Monday, July 11, 2005 |
| 07.11.05 (3:55 pm) [edit] |
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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 untill 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 unrestful. 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.
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| Thursday, July 7, 2005 |
| 07.07.05 (5:05 pm) [edit] |
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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.
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