Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: September 13, 2001
Robert’s Update BMT + 56
We said we would write when something new happened. We did not expect to let almost a week go by but both Mark and I had a lot of catch up to do once we were at home. I had a lot to do with the plans for the children’s hospital and Mark had work to catch up on and soccer coaching to get organized. Then the last few days have been so draining for everyone in the United States that I think our need for sleep overcame everything else.
Robert looked puffy on Monday and his bottom lip was very trembly almost as if he was cold. Mark and I decided to take him up to UCSF. At first, I was going to take Robert by myself but Mark and I began a big debate (we only argue about directions) about which local hospital do we go to in case of emergency. We were both so tense; Mark decided he should go with me.
Dr. Cowan felt Robert looked good and that if we did blood draws that day we would not need to go to clinic on Wednesday. White blood count was up but everything else was lower, not to the level where Robert needed transfusions but they were disappointing. Dr. Cowan decided we could wait and do IVIG when we returned to clinic on Sept. 19th.
Today, Theresa, the nurse came by to do blood draws and watch me do a dressing change. I can say I thoroughly do not like to do dressing changes and try to talk Mark into doing it anytime I can. Unfortunately, Mark was not there to relieve me of this most awful chore. It is the only time we seem to get real tears out of Robert. It was bad news; the area was read and there was a little pus on the biopatch. That meant we could not put another biopatch on, we had to just put gauze. In two days we have to do it again versus leaving it alone for a week with a biopatch.
The other bad news was that Good Sam’s lab said they didn’t get enough blood to get counts. Actually they were afraid to report them because they compared them to blood work they did last April. I called the manager of the lab and they finally gave me the results. They were not very good. Robert’s hemoglobin was down to 6.6 and his platelets were down to 18K. This meant he needed a red blood and a platelet transfusion. Dr. Cowan felt it would be best to check us in for 23 hours so that they could run the blood work again and if it came out the same, get him both transfusion as well as his IVIG.
We must not have paid our bill on time because our room doesn’t have a bed and we get to look out at the hospital’s exhaust system. I need to thank Kendra for getting us a room with a bed for our first 60-day visit. I can handle the noise and lack of bed for one night.
When we saw Dr. Cowan, he said the last engraftment test showed the same results as the last three studies. He also said that the Tcell test is so experimental they are not sure if the results have proven to correlate to anything yet. He said we would just have to continue to run engraftment tests and see if they continue to show a high percentage of donor made blood. There is God trying to work on my patience again.
Robert has been in great spirits since he has been home. He is not walking yet but he worked harder at trying to walk holding one hand when Scott came to visit him today. Scott is one of his best friends and his physical therapist too. Both Robert and Matt were excited to see Scott. Matt wanted to show Scott Robert’s central line. He kept telling Scott he wanted to show him Robert’s platelets when he actually meant Robert’s central line.
I did get an update on JoJo from his mother tonight and it was not good. His abdomin is filling up with blood again and they can’t figure out where he is bleeding from. Ping says he is in a lot of pain and Dr. Cowan does not want to drain off the blood because he believes the pressure of the bloating is stopping further bleeding. Let’s step up the praying again.
On a positive note, Parris is doing great. His platelets are 115,000, close to normal!
