Submitted by Mike on Wed, 04/02/2008 – 1:48pm.
Hi Everyone—-
Well, we are still living in Pittsburgh ( much longer than we expected). On the last update I told you about the B.K. virus and that Brandon had tested positive. It got worse and spread from his urine to his blood. As the levels increased the Doctor’s became very concerned. We had to admit Brandon in the hospital for some I.V. medication. The problem was the medicine was just as dangerous as the virus. Both attack the transplanted organ. Mike and I had to be “briefed” on the dangers of administering this very powerful medicine. After we understood all of the risks we had to sign consent forms to release the hospital and Doctor’s of any liability. With our stomach’s in knots we choose to give Brandon the drug. Four Doctor’s, the pharmacist and the nurse all had to check the same syringe of medicine before giving it to Brandon.( We were so-o-o-o nervous) They gave him the smallest possible dose over a 12 hour period of time. His vitals had to be checked every 15 minutes! The only positive thing that day was that the “Penguins Hockey Team ” came to visit the hospital. Brandon thought they were all there just to see him! They brought him a hat, poster, blanket and a signed player yearbook. Now every time he see’s them on T.V. he yell’s “Hey those are my friends!!” In addition to the I.V. medicine the Doctor’s also added an oral medicine to our daily routine. Brandon’s blood is being drawn very frequently and Doctor’s are watching the results closely. To date, his blood is beginning to improve and we have not yet had to give another dose of the I.V. medication.( usually it takes several I.V. doses before you see results!) We have our fingers crossed!!
The weather here in Pittsburgh has been COLD! VERY COLD!!! We have had several heavy snows and have run the heat on a pretty much continuous basis!! Brandon was able to make his 1st snowman (with Daddy’s help of course). Unlike Florida, we get very excited if the thermometer reads 20 or above!!
Brandon continues to grow and speaks very well. He has learned his ABC’s, can count to 10, knows all of his shapes and is working on his days of the week. We have been potty training Brandon and after a couple of bumpy weeks it seems like he’s getting the hang of it!
As far as his “new kidney” goes it seems to be functioning very well. We still have to get very large volumes of liquid in him but with alot of creativity we seem to accomplish this on most days! The days seem like they are just flying by. While Brandon loves “living” in Pittsburgh he ask’s every day when he can go back home to Florida to see all of his “Family”. Hopefully that day is coming soon!!!! — Julie