Sorry for the delay in blogging, I just can't understand why I am not able to access my blog while we are hospitalized. Roy couldn't figure it out either I think it's something with the internet connection at the hospital. Anyway.............
So....Thursday night August 3 into Friday morning I had a difficult time with Jack. He had about 5 bowel movements, lots of belly pain, woke up and vomitted something fierce, so I knew what was about to happen. I called down to Ginny, the nurse practioner in Transplant and she thought it would be a good idea for us to come down and be admitted. So I packed a bag got some toys for Jack and left for Philly. Once we arrived we were taken into Triage and Jack lost more weight, a total of 4 and 1/2 pounds in a week, so it meant we were doing something very wrong. Since it was Friday we all knew that it was going to be a quiet weekend but a helpful weekend. The name of the game was pain management, IV steriods to help the GVHD and nutrition and plan for a picc line on Monday if the weekend doesn't go well start him on TPN. Also it was confirmed that Jack has EBV in his gut and in his blood and that he was going to need to start treatment on Monday for that as well as get IVIG's, they didn't think his IV was going to last, so plan ahead.
Well we made it through the weekend with flying colors. Jack showed improvement with his pain as well as gaining some weight. Monday came (Oma's 81st Birthday) and the news came that the doc's were happy with Jack's progress and he wasn't going to get a picc line. Unfortunately we were not allowed to go home. The plan came in place, Monday - Rituxibum(medication for EBV that surpresses your b-cell function), Tuesday - IVIG, continue giving IV steriods and start Oral steriods on Wednesday and if everything goes well, go home Thursday. And today, Thursday August 10, we were able to go home.
Tuesday, Jack officially became +90 post transplant which now gives him the ability to be off mask. The only thing that give us is the ability to go in and out of the hopsital without a mask but we are still unable to go to places with big crowds such as the grocery store, church, amusment parks, etc....the only times we can go to any of these places are during off hours......yeah right!!!!!! Thats ok, as long as we get Jack on track and work towards being totally recovered from transplant and have a working immune system.
Thank you again for all your thoughts, knocks, crosses and prayers and keep them coming.
"Difficulties increase the nearer we approach our goal." -- Johann Wolfgang von Goethe