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| Wednesday, October 12, 2005 |
| 10.13.05 (5:48 am) [edit] |
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John is doing Great! He has another broncoscopy schedualed 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 culpret. It was. So now he will be taking the Cellcept coated specially to avoid nausea.. the problem? INSURANCE. Thgy 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 sperometer 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 LICENCE FOR ORGAN DONATION!
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| Teusday, September 21, 2005 |
| 09.21.05 (6:20 pm) [edit] |
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 tranplant to check for rejection. This one also should be checking for rejection and we see the docter today for results. I went with him in the morning for the proceedure, 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 docter or coordinator about him driving, and maybe exercising. He weighs about 170 pounds, and is still on insulin, but they redused the amount during the day he takes. The problem is that his blood surgar 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 docters the high blood sugar. He isn't have tremors as bad, and is becoming accustomed to most of his medications, but there are still alot 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 docters and hope for an almost normal life again. But realistically, it will never be the same. There will always be docter'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.
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| Sunday, September 11, 2005 |
| 09.11.05 (8:41 am) [edit] |
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 afterwards 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 rehap every morning. He gets his labs drawn twice a week, to check his levels of his antirejection drugs, and steriods, and blood counts, and just about everything else you can think of. He sees the docter 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.
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| Sunday, August 28, 2005 |
| 08.28.05 (6:37 am) [edit] |
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 trache 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 yardsale 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 excersize 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.
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| Saturday, August 26, 2005 |
| 08.27.05 (7:06 am) [edit] |
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John is home! I haven't been able to post, but will try this evening.
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| Sunday, August 22, 2005 |
| 08.21.05 (7:35 pm) [edit] |
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 negitive 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 alot 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 docters say he could actually be home by the end of the week. This is truely a mircle.
I need to add something to one of my earler 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
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| Sunday, August 21, 2005 |
| 08.21.05 (3:29 am) [edit] |
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 recieve and letting him read them. It makes me cry and it will make him cry too probably. God Bless you.
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| Saturday, August 20, 2005 |
| 08.20.05 (5:14 am) [edit] |
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 proceedure, 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 docters 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 argumentitive, 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 therepist he is ignoring it. I suspect the predisone has alot to do with his moods, and it has alot 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/frust rated 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 therepy 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, couters, cabinets, refrigerator and freezer cleaned out and everything cleaned with 1 part bleach, 9 parts water, or a disinfectant that is enviormentally 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 alot 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 bunkbeds 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 alot of people for the first couple of months. Noone 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 whinning 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 recenly.
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| Thursday, August 18, 2005 |
| 08.18.05 (8:47 pm) [edit] |
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 docter 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 surgury, 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 schedualed 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 cannella, 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 aggitated, when he was sedated before they woke him up. I thought at the time, that yes, his subconscience had heard me, and at least one nurse was wrong. I still think so.
I never mentioned certain things, like the docters 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 doctoer 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 alot of weight, and is weak, and has a trache... well, he gets impatient to go home, and seeing friends/family would cheer him up.
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| Tuesday, August 16, 2005 |
| 08.16.05 (7:51 pm) [edit] |
Yesterday, John was a bit discouraged, due to several things going on. I'll start from the bottom up. They did an ultrasound on his legs to check on the blood clot, and it was still there, and had not gotten smaller, and there is now one in his other leg. His blood count was fairly stable but there was a little bleeding from the ulcer in his upper intestines, that I'm now told, was in a dangerous place and being watched due to not only possible bleeding, but to make sure it doesn't get worse and become a whole. No food(tube feedings),due to the ulcer, but they feed him once in the morning a small amount to see how he tolerates it and what his blood counts look like. A lower dose of blood thinner for the ulcer so it doesn't bleed, but that isn't good for the clots. He gets his blood thinner as a shot in his stomach, and after all these weeks, his stomach is very bruised. Lungs are doing fine, back on the T for 24 hours at least. Trache and nose tube that he hates, and he wants to breath out of his mouth and nose, and of course talk and eat. I was supposed to work, but I didn't actually make it yet.
Today, better. They took off the T, and replaced it with a little piece of cup like thing with a strap for his neck, that just warms the oxygen and doesn't actually fit over the trache tube, just around it, and can be moved or removed, and is sort of like a cannela for the trache. They said that the clots need to be watched closely, and he will need an ultrasound every week. If they move, he will need an umbrella type surgary for his heart/lungs to keep them out. His blood count came up a point, so they restarted tube feeding. They problem is that they cannot go back to full strength on the blood thinner for at least two weeks to disolve the clots due to his ulcer rebleeding. Then they still have to treat them for 6 months or so. He walked to the second corner of the nurses desk. They came in and removed the ballon in his throat so he can eventually eat, and maybe talk, but when they do that, the fluids that have built up on top of it end up in his lungs, and he has to cough them out. Whitch he did, and he has a suction thingy to help get any fluids pulled from the mouth of his trache. He said it was easier to breath now, and he has some airflow around the trache into his nose and mouth, but not enough to really talk yet, and I heard him say "Hi Cathy", and "no". He was fine, and they are supposed to down size the trache to allow more air flow around it, into his nose and mouth tomorrow. The problem is, that when I left at 11:30 pm, he was still coughing up stuff, and i think his oxygen would go down, then come back up. It's hard to tell because his oxygen reader is on his finger, and maybe not picking up correctly. It was changed today, and when you touch it you can possibly change the numbers. But I made sure he could suction his trache when he coughed by himself before I left. They also turned down the mositure on the warmer, because that would possibly make him cough with the moisture going into his lungs. I get so nervous and scared when he coughs, or his numbers change at all, and I panic, and don't want to leave. I think I can make sure he's alright if i'm there, make sure he doesn't choke, or can breath, or at least get a nurse. I finally made myself leave, cause I was freaking myself out.
Things I've missed:
The kids go back to school tomorrow.
I missed my sister's birthday on August 6,(she was out of town), Happy Birthday to Susie I missed my neice's birthday on Agust 4, Happy birthday Cara
I missed my daughters' graduation Cum Laude, Congradulations Shannon
I missed work for three days so far, Sorry Work
i missed my daughter Brittany's first Choir/Parent meeting of the year, Sorry Brit, we are going to try and go to all the rest of the meetings.
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| Sunday, August 14, 2005 |
| 08.14.05 (7:28 pm) [edit] |
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 interurptions from nurses, respitory therepy, 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 aggitated about it, and wanted to stay on the vent. He thought he was to tired to breath I think. He also appeared a bit dispondant, and said he was depressed. So they gave him some Attivan, 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 steriods are effecting him, as he is on predisone. 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 docters 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 proceedure. 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 proceedure. 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 docter 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 docters 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 antibotics. 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 proceedure. The nurse said they gave him fentenal(sp) and something else, and had to give him alot, then more for thne 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 hight 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 docters, 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 afterwards, he thought he still needed oxygen so they would put the canela on no oxygen and give it to him anyway and let him think he was getting oxygen at night. Very physicalogical, like when John gets aggitated and wants to go on the vent for help when he maybe doesn't need it yet.
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| THANK YOU |
| 08.12.05 (6:52 pm) [edit] |
Thank you to the Collinsville High School Cheerleaders for raising over $300.00 during their carwash.
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
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| Friday, August 12, 2005 |
| 08.12.05 (6:28 pm) [edit] |
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 greatful 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 proceedure 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 percaset 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 paralized vocal cords may be temperary. They will look this weekend to put in something so he can talk, he just needs to be breathing on his owh, 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.
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| Thursday, August 11, 2005 |
| 08.11.05 (6:19 pm) [edit] |
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 docters came in and discussed his case and his paralized 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.
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| Thursday August 11, 2005 |
| 08.11.05 (3:11 am) [edit] |
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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. Finially 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.
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| Wednesday, August 10, 2005 |
| 08.11.05 (3:06 am) [edit] |
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 compfortable 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 docter later, or if if was possibly paralized, or just swollen from the intibation/trache, but it shouldn't intefear 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.
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| Monday August 8, 2005 |
| 08.08.05 (6:43 pm) [edit] |
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 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
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| Sunday August 7, 2005 |
| 08.07.05 (7:50 pm) [edit] |
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, Keelie 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 narcodics.
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 alot, and he told me to tell Shannon he was proud of her for graduating Cum Laude, 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.
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| Friday, August 4, 2005 |
| 08.05.05 (8:15 pm) [edit] |
Today my oldest daughter graduated from Missouri Southwestern and I missed it. There is really nothing else to say after that, it's unbelieveable.
John was sleeping and on the t thingy and breathing by himself, with on 40% which is the equivalant 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 broncosopy, 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 therepy tomorrow, and possibly fix something so he can talk with his trache. But so far physical therepy 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.
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| Thursday August 4, 2005 |
| 08.04.05 (9:40 pm) [edit] |
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 stoping 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 volumns. 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 did'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 excellant, and you couldn't tell he wasn't on the vent, and his blood pressure and heart rate were excellant. They put him back on the vent after 6pm. He went over 12 hours breathing by hisself 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 camara 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 waterbed, 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.
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| Wednesday August 3, 2005 |
| 08.03.05 (9:15 pm) [edit] |
Today, I went to the hospital at around 11 am, expecting great things, and got not so great things. I walked in and Martha was still there, and she was supposed to have left by 11, and John was laying in bed, and looked so small. His stats looked... OMG his heart rate was 1149! I said what happened? They told me he was just laying there calm breathing with his T thingy(he used it yesterday, it's to help wean off the vent, and is actually just oxygen, so he is really breathing on his own) and his heart rate and blood pressure just shot up. They gave him medicine and the blood pressure looked better, but his breathing was a little fast, and they couldn't get his heart rate back down. Martha had to go for awhile, and would be back. I talked to John, who seemed to know me, and tried to help him calm down, but his heart rate, just couldn't be budged. His breathing would get fast, so I bribed him with ice chips, and he would slow it down, then it would speed up again. Finally, they put him back on the vent, but he had been off it for over 6 hours. They told me they were going to shock him back into Sinus rhythm from Sinus tachycardia, using the dephibulator. They gave him some Propofol, the same drug used to sedate him before. When I was allowed back in, his heart rate was down to 84, and he was sleeping. It worked and everything looked great. His parents came, and John slept most of the day.
As he woke it was apparent, he didn't know me, or remember he had had the transplant again. I told his mom, this was beginning to feel like that movie, "50 First Dates", to me, and everyday I tell him about 50 times that he had a lung transplant and can breathe. His mom left at 7pm. John didn't know he was in a hospital, and tried to get his legs over the rail, got one over actually, and was trying the second, and wanted to go home. His blood pressure shot up again, and the nurse told me to "why don't you try to stop touching him and sit down?". So I sat. and watched his blood pressure go to 220. and asked if they were going to give him anything.. and she said, "yes, i just don't want to climb". I said what? and she said, "I guess I just don't want to climb over you, so i'm waiting". I jumped up and moved to the other side of the bed and said, "So instead of asking me to move, your not giving him medicine? I'll move. I'll move to the other chair, Ill move to the other room, I'll move to my house, if you just take care of him!". Yes, I was a little upset. He calmed down. I sat with him, he still was agitated whenever he woke up. The docter came in, and tried to convince me to go home. right. I told John again he had his transplant, due to him breathing at about 40 breaths in stead of the normal 15-30, and his blood pressure rising. He shook his head no. The nurse wouldn't tell him and said she didn't think he needed to know, that it would probably just upset him more.
At around midnight, I realized he was asking me something, after the nurse had given him some antibiotics, and he got upset for a minute. I explained he didn't have an infection, but it was for his new lungs. He thought about it. Then shook his head, ok. I told him,I was going to have to go home soon and check on the kids, and he shook his head yes. I said do you know who I am? he said yes, and I said you know where you are at? he said yes, I said hospital? (earlier he had said no)this time he said yes, I said you've had your transplant? he said yes. I waited.. the nurse came in and cleaned the trache, he was calm, and she cleaned his mouth, he was calm. hmmm. I told him I had to go, not to be upset, and he indicated I should, he wouldn't be upset. He gave me his kiss.... and I said I love you, he mouthed, "I love you back". It was John. He has never said I love you too, it's always been i love you back.
On the way home I realized, it had been between 9 and 10 hours, each day, that after they had turned off the Propofol he had suddenly turned from special Johnny(Josh's name for him"to real Johnny. Why didn't the hospital nurses, or docters warn us? or something.. I'm looking this up. Well, it seems its a general anesthetic, and you shouldn't do any driving for 24 hours. Well, he will not be doing that. We shall see about tomorrow.
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| Teusday August 2, 2005 |
| 08.02.05 (4:58 pm) [edit] |
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 proceedure 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 bacame 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 docters 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 kew 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 happeneding), 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 cathater, 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 therepy, 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.
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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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