Friday, June 23rd update

Well, so much has happened since I last updated.

Wed. Preston was very sick all day. He ran a high fever, and his breathing was labored. When Jr. came to the hospital and saw his breathing problem, he put oxygen on Preston and set it at 3 liters, and it helped him. The nurses or respiratory therapist didn't even care enough to try and help him. He was able to wean him down to 2 liters. Today was the first day he actually came off the oxygen again, and I weaned him myself today and took him off.

Then yesterday at 6 p.m. our nurse, who by the way is a super duper nurse and now a friend, came in and said the dr. had written orders for Preston to be moved to adult ICU. I asked why and she said because of the census. Hello?? We had 3 patients and they needed the bed?? I realize more admissions came in, and I was told there were 10 patients and that was not the truth. There were 8 and lots of empty beds, and I was told there wasn't enough nursing staff, and I found out later they called more nurses in. I told them he was not going to adult ICU. Jr. and I have stayed with him for 8 weeks and then they will send him down there where we cannot stay with him? No way. He would not do well and neither would we. I hate to say this, but I don't trust them to take care of him properly. We have seen the laziness of many of the nurses in PICU and if I wasn't there, he would lay wet for who knows how long. The charge nurse said Dr. Johnson, the neurosurgeon said it was ok to send him to ICU. Come to find out that was also a lie as he has been gone since Wed. Anyhow I told her to call Dr. Johnson and tell him to come and take the external shunt out, and I would bring him home before he would go to ICU, or take him to another hospital. So they decided we could go to the peds. floor, just outside the PICU. At 9 p.m. I was still waiting to be moved, and our nurse Nikki called and they said give them 10 min. So they called back and she gave them the report and then the charge nurse called and said we could not go there, and were going to 6th floor. But I had been told there were no beds on 6th floor earlier. At 10 p.m. I was still waiting and Preston was sound asleep. When Nikki came in I told her I wanted to file a complaint and she offered to call the nurse manager for me! She told the lady that she had taken care of us for months (2 actually) and we felt we were being pushed around, etc., so she called me and told me we could sleep there last night and she would come in and talk to me this a.m. and try and straighten this out. Well, she came in and said sometimes the medical staff don't use common sense! She said as long as Preston needed ICU that he would be in PICU! She apologized.

Preston's fever is better, and he was up yesterday and today in the wheelchair. I took him downstairs in the wheelchair and outside for a walk, in front of the hospital. I thought the fresh air and sunshine would do him good. I plan to do this every day next week. The physical therapist is a man and can get Preston in and out of bed alone, and into the wheelchair. I might be able too, I haven't tried yet. But I won't worry about it as long as we are there and Todd can do it. He made Preston stand up when he got out of the wheelchair and he could do it, with support. He is now on a muscle relaxer to help his muscles not to be so tight.

We are most concerned about the feeding tube. He cannot come home with the current feeding tube in. He has to have a NG tube or a peg inserted in his tummy, as what he has now is only for temporary. I don't want him to have to have another surgery to have the peg put in, but we may have to. We will see how he is doing by the end of next week. The speech pathologist has worked with him this week and there is some improvement. But it can be a long process before he is ready to eat and swallow properly. We definately don't want him to asperate.

So that is the latest. Jr. and I both feel he would be better off at home and get home health, physical therapy etc. to come into our home, than for us to have to go the Roger Peace Center for rehabilition. We feel he will do better at home, as we have been in the hospital so long. So he may have to come home being tube fed and in diapers.

Thank all of you who came to the hospital on Preston's birthday, brought gifts, cards, balloons, etc. He was so sick that day that he really didn't even seem to be much aware of it all. But we have saved all of his cards and he can see them later, and he now has $100 to spend later, due to all of the money he has received since he has been in the hospital and for his birthday. Our nurse that day couldn't believe how many cards Preston received for his birthday.

Thank you for caring about him, and us during this most difficult time. It is hard to believe we have been in the hospital for 2 months.