Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: November 10, 2001
Robert’s Update BMT + 111
Today was not fun. Robert started the day waking up late, 9:00 a.m. I took a look at his central line as soon as he woke up and realized something was wrong with the line. It looked like there was only one line coming out of him instead of two. I followed the line out of his body and realized it divided into two about 10 inches further down the line than it usually does. I called the nurse right away and when I stood him up the line fell right out. This is not a good thing. Rather than replace the line right away which would have taken scheduling surgery, they decided to put a PIK into his arm.
The PIK looks like a large IV or a small Broviac. It requires Versed and morphine vs. anesthesia. Robert could not eat until this was completed and they had a hard time getting going today. He could not eat until everything was finished including X-Rays to make sure the line was in the right place. Robert’s PIK line means that he will likely stay in the hospital until Thurs or Fri. Dr. Horn is trying to decide if Robert can live with the PIK or does he need a new central line. The central line would be needed if the engraftment test shows he needs to be given bone marrow by his previous donor ( there is bone marrow from the donor frozen). I believe there is a lesson to be learned here.
We were using paper tape on Robert’s dressing so that they could look at the site each day. Yesterday they used paper tape to put in the stress loop. I believe they should have used taciderm instead of paper on the stress loop. At least if it was going to come out I am glad it happened in the hospital and not with all his siblings standing around. The other good news is I may have recruited a pediatric IV nurse. She lives in Mountain View and would like to work in our area. When we open our children’s hospital in San Jose, I hope we can build a child friendly treatment room. I haven’ t seen one yet but I think we could be pretty creative.
The good news today is when I slammed a door Robert jumped. I can’t remember that ever happening before.
