What Doesn’t This "MONSTER" Do? (cont’d)

August 10, 2006 at 1:17 am

Hello Family! It’s been a very hectic and horrifying week.
Day four, Billy received his second treatment. He was a little coherent but more confused then anything else. I consulted with a Doctor from Respiratory about the vent tube and the dangers of being on it longer then 14 days. The Muscles in the throat would begin to break down and cause complications with the treatments he was receiving. The Doctor also explained the complications of treichs and blood thinners. The agreement would be to have a treich done but do it on a day that would not interfere with the treatment. Surgery was scheduled for 8 a.m. the next morning.
Day five, Billy was still trying to sort things out but it was making him more confused. Not remembering and not knowing was terrifying him. I told him just to relax and that I would help him sort things out in a few days. Billy received his treich. He came through the surgery well but there was alot of irritation in the throat that needs to be watched. Explaining to Billy that the vent in his mouth was gone and that there was something in his neck was not coming across very well that day because of the pain medicine and anesthetic. He did try to talk but the nurse said she couldn’t read lips. He looked so much more comfortable without all of that tubing sticking out of his mouth. The rest of the day was just letting him rest but keeping him informed. Of course once again meds had to be rewritten and changed. The Doctor on call came to visit. He tried to rediagnose Billy. Saying that this was not GBS and started spouting off that GBS doesn’t last longer then 6 weeks. Also that it was my job to find out if the nerves had been damaged from the inside or the out. Also that I needed to go back to the EMG to find the answers and that the fact that the Doctor who did the EMG Should not have explained it to us in Lamens Terms about the results. I came unglued and Billys Sister nearly did. I called him on everything he was saying. To the point that when I got done saying what I had to say he asked me where I got my information about GBS, (Thank you all ), and that in order for him to know what I knew he would have to go online and do research. Finally, I did tell him that I wanted his imput about this and that I would take into consideration what he was saying. He left admitting to the fact that he had only known Billy for 5 minutes, which would have taken him that long to even get his hands on Billys Medical Chart, and that if this was GBS it was the worst he had ever seen and he has seen 2 cases. Billys nurse said that he had no business trying to do what he did when the diagnosis has already been confirmed.
Day six, Billy had a good day. All positive signs. Trying to tell me he was ready to go home, kissing my finger, smiling, and shrugging his shoulders to nodding his head. All Positive. Although, towards the end of the day, bowel problems were in the midst. I cherish this day because it was good for Billy.
Day seven, I walked in to find Billy scared to death. Laying in a cold sweat and not knowing the respriatory nurse and what she was about to do. I explained to her that she had to tell him because he only remembers that day that day. Not day to day. While she is standing there trying to explain herself I am trying to suction Billys throat because he is bringing up everything from mucous to food from the feeding tube. I had to ask her if she thought she could stop talking long enough to help me cause he was choking. And I was panicing which didn’t help. His nurse and I finally got it under control and got him calmed down. His nurse was concerned about the food coming back through his throat. The Bowel was becoming desended. The food had acted like plaster filling. This called for xrays to confirm what was going on. At the same time I was informed that Billy had contacted MRSA. This is traveling through the hospital and now Billy is infected. The respiratory nurse returned later to change the treich collar. This caused the bleeding to begin and Billy was covered in Blood and once again scared to death. His nurse packed him and called the Doctor in for emergency service. The Doctor was able to pack it with a powder that helped the clotting. Then the Bowel Problem caused Stats to raise and Billys stomach to swell. This looked like the scene from Aliens. The Gastrologist said there wasn’t anything they could really do. Billys nurse had a different Idea. Since the xray confirmed what he thought there was only one solution. He to the suction tube, fitted it to the feeding tube and began suctioning the waste from Billys Bowel. It worked enough to bring his Stats down and Billy was able to rest. Talk of an indiscopy being done on day eight and all of this days events caused me to stay over night and make sure he was going to be alright. He pretty much rested through the night and the night nurse wanted an explanation from me because he was doing good when she left him the morning before.
Day eight, today. Because of the MRSA, Billy was moved to a private room and isolated. Because of this and the Bowel Problem the treatments have been put on hold and the cathiter that was in place for the treatments was removed. The indiscopy was an on again off again subject today. The main concern was nicking the bowel and causing it to rip. Also since Billys stomach had been particially removed in 1988 because of ulcers and rerouted caused concern because now the stomach was smaller and even placing a drainage tube would be a risk. The suctioning continued and his nurse took the time to do massage therapy causing decompression to continue. Along with a mineral oil enema and a tap water enema it all began to break loose by the end of the day. The indiscopy was put on hold till a later date. All meds and tube feeding would have to be rewritten in order for Billy to get the meds and nutrition that he needs. Trying to get Billy to rest at all today was a chore. He is afraid if he goes to sleep he won’t remember what has been going on around him. We have noticed that Billy may be at his plateau. Although, I cannot hold my breath. We can only hope. I just have to keep reminding him that all of the things going on around him are the little things that have to be fixed in order to help him get well. Some day he will understand, but thank God, in most cases, he won’t remember.
He noticed his wedding band on my chain today. He was upset about that. I explained to him that they had to take it off because his hands were so swollen that it was begining to cut the skin. Anyway, I asked him to marry me. By Mouthing, He asked me if I would marry him again. I said yes. Then I asked him if he would marry me again. He shook his head and mouthed the word yes. So, not only will we redo our vows but a wedding will take place when Billy says he is ready.
Now, Dear Family, it is time for me to get some rest. I wanted to keep you posted and let you know how Billy is doing. We thankyou for all you have done and are doing for us. Keep us in your prayers as we keep you all in ours. GOD BLESS ALL OF YOU……………………….Piper
P.S. My daughter had a talk with God and Billys brother Sammy. She asked them to watch over him and if the Romeo Symptom does happen, for Sammy to hold his hand on the other side until it was over.