I’m really struggling with keeping a positive attitude today. Frankly, it doesn’t seem to matter what our attitude is.
Bad stuff keeps happening irregardless.

He also has the infection in his urinary track and the staph infection at his g-tube site.

He has improved so much in the last 2 days! Yesterday he got off the oxygen and walked down to Children’s Harbor and played basketball! When he got tired he sat down in his chair, rested and got back up and played again! Today he did the same thing. Today he hasn’t needed oxygen at all! The doctor said she would like to release him, but he was so sick and on so much oxygen just so recently that she’s not comfortable doing so quite yet. She is talking about releasing him soon if I think I can tend to his demanding healthcare schedule. He is on i.v. antibiotics 4 times a day, for an hour each. He also is still getting the feeds at night. I told her we would do fine that being home is much preferable to being inpatient.

I can’t believe the difference in his skin since he started the steroids! It looks better than it has in months. The terrible abdominal cramping he was having that he was getting Morphine for has subsided as well. Both of these improvements seem to confirm that he had graft vs. host disease of the skin as well as gut.

The thyroid medication is being increased weekly and I can’t believe it, but, he hardly complained about being cold today! He was trembling in his sleep so bad last night that the nurse gave him some medication for it. However, in the last 2 days it has improved so much. It is strange to see him now lying in bed without covers.

Today is the first day I have seen him do anything athletic in over 3 years! I could have cried. I was just flooded with joy. He did well too! I forgot how naturally athletic he is. One of the nurses commented that he is stronger than she has ever seen him.

I am filled with hope. Its been a good day.

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His oxygen rate went below 90 today and he is now on oxygen at 2.5 litres.

So discouraging. Richard is up there now and I came home to sleep and shower. I haven’t brushed my teeth or taken my meds since Friday a.m. It was a bad night.

THE BAD NEWS:
This morning he was still complaining about difficulty breathing and by noon his chest was constricted and he felt like he couldn’t get enough air. He was having chest pain as well. I called ahead to clinic and they were prepared for us when we got here. Immediately he was hooked up the the oxygen monitor, blood pressure monitor and all vital signs were monitored. His oxygen level showed 100 and I was so relieved! The thing that was going through my mind was pneumonia again. Within about 1 hours of being here he had a EKG and chest x-ray. The EKG was good and the x-ray clear. Things were looking up. He was showing signs of his airways constricting and he was given a breathing treatment of Albuteral to open them up. I’m not sure if I spelled that right or not. He didn’t feel it helped much. His feeling of being cold was real bad today. He was shaking a lot and was given Demeral to help. Because of the severity of his symptoms he was admitted for observation. The tightness in his chest was bad tonight and the doctor was consulted a couple of times. The day doctor today suspects pulmonary edema -again- but she’s not certain, nothing showed on x-ray. The doctor tonight suspects something muscular is going on. Could it be that he hurt himself doing all the breathing tests yesterday? I don’t know. They were rather strenuous.

His muscles are aching because he had been shaking all day long from being cold. He is lying in bed now with a fleece hat on, fleece coat, long sleeve shirt, long pants, fleece blanket and several hospital blankets. His temp is 97 something. He’s sweating, but still is cold. They brought up this old machine from the 50’s the color of industrial green and hooked up a blanket to it. A thermometer was adjusted to 95 degrees on the machine and water is heated to that temperature and circulated throughout the blanket. The machine was loud! Which would of been tolerable if the thing worked. The nurse swore the blanket was warm but to me it felt barely tepid. It was like the temperature of spit. We asked to turn it up, but the doctor wouldn’t let it go above 95. Now our electric blanket gets warm! Last night he was shaking so bad it was awful. I cranked it up to high and put a sheet on him and it on top and let it go for 20 minutes. His shaking stopped and I turned it down to medium. Soon after I took it off and he slept with he regular comforter. Of course, it is against “hospital rules” to bring it up here. I’m mad at myself for asking about it. I wish I would have brought it up here and just plugged it in and used it. I’ve noticed that certain things are allowed here and nothing said to you if you don’t ask first. He’s been waiting for over an hour for an i.v. dose of Demeral for the shaking. The nurse has come in here a couple times and explained they are having a problem getting it up here for him.

He has been having increasing intestinal cramping as the weeks go by. It was very bad when he was in here for the infected toes, then it got better and now it is getting much worse. He sometimes has to take Morphine. Today his primary doctor said she suspected graft verses host disease of the gut and possibly gvhd on his skin. She put him back on a short dose of steroids. I hate that. She did not want to put him back on them again but it seemed to be the thing to do.

Tonight he has also been nauseated and has thrown-up. She stopped the feeds tonight to see if that would help his cramping.

This is awful. How much more does he have to go through before he gets better?? His stamina is amazing. He just keeps going on and fighting and fighting.

How much more Lord? How much more?

Deborah and Richard went and visited Troy University on Saturday. Deborah is accepted there, but hasn’t made up her mind where she wants to go. She liked it there, but was not impressed with what the town had to offer. Today she visited UAB. She was not very serious about it until she saw it. It has much to offer. It is not a gated college like some of the others she visited and is right in the city. Since it’s enrollment mostly commutes (over 70%) we felt it wouldn’t offer a sense of college community. But, after touring it and hearing about the huge array of activities, clubs, sororities, etc. we see that the college experience is what you make of it and what you want out of it. We think it would be best for her to stay in a dorm and get away from all she’s been going through here. She experiences so much heartache here that I think some distance would be good for her. Plus, she wants the experience of “going away” to college. I don’t know what she’ll decide. She’s visited colleges all over, in Florida, Missouri, Georgia and Alabama. Where ever she goes will be too far for me, even downtown Birmingham.

It’s hard to believe a year has passed. This has been the longest year I have ever experienced. John’s been in the hospital for 6 months total since last October. He’s doing better in a lot of ways. Diagnosing the thyroid problem has made a big difference. I always thought the thyroid just controlled all the things that made you feel comfortable. But, it does so much more. An inactive thyroid can actually become fatal. His skin continues to peel, but not as severely as before. We still use a tub of Eucerin moisturizing cream a week. The doctor contributes this to the thyroid. Also, he is so cold most of the time. It is unreal. Sometimes he’s under 3 comforters and still shakes. The only thing that really helps a lot is warming the comforters in the dryer and piling them on him and him wearing a stocking cap. One day I turned off the a/c and it got to 85 in the house and he was still under the comforters and was still shaking too much to take his shower. I bought an electric blanket yesterday for him. He said it helped yesterday. He doesn’t sleep at night with it, just uses it during the day. Today the doctor who is on service gave him a RX of Demerol to control the shaking when it becomes uncontrollable. The last doctor who was on didn’t want him using it. Hopefully, he’ll only need it a couple times a week. I do see improvement in the area. He really dislikes taking narcotics.

Speaking of narcotics, he is totally off the Oxycotin. He was weaned off of it and onto Methadone and as of today he is off the Methadone as well.

He has been fighting nausea a lot more than usual. He was doing so much better and was eating three good meals a day and then the infected ingrown toes episode began and he was put on Cipro. We think that is what has been responsible for the nausea. He got off the antibiotic today as well so hopefully it will improve soon.

Last night Richard and I went to the Bone Marrow Transplant Support Group in Homewood. It was a small group, everyone was so nice. The two facilitators were employees in the UAB transplant unit. It was so nice talking to people who have been there and have come through it and are living normal or semi-normal lives. I gained some perspective I didn’t have.

Talk to you later.