Day 5 & 6...Recovery is moving forward

Where we left off....last night was pretty uneventful for the most part.....The evening started with Braden's blood pressure steadily increasing to the 140-150's/ 80's. As a result of this they started Braden on Hydralazine. He has had this medication before(last year when he was first diagnosed) and had a few reactions to it, but it could not be determined as an allergy...Soon after they gave him the hydralazine to try to control his BP he became flushed, restless and very agitated and it did not give the results that the Doctors wanted, so after some discussion Braden was restarted on Nicardipine IV and they have determined he has an allergy to hydralazine. They also tried 5 times to start 2 more IV's with no success, they are wanting to get the Central line in his neck out because of the increase risk of infection, but with no success after 5 sticks I had to step in and say it was time to get a break. About midway through the night Braden's urine output substantially increased and the swelling in his legs got a little bit better. The Nicardipine helped his blood pressure and we were able to rest thereafter. At about 3am, Braden woke up and was wide awake. I tried to convince him to go back to bed, but he wasnt in the mood to sleep as he told me :), rather he wanted to watch cartoon. (thank goodness for the disney channel) So that is just what we did. Finally at about 6am, he decided he would go back to bed. Early in the morning the Vasscular doctors came around and saw Braden and were VERY impressed with his progress. Even though his BP is still slightly elevated this is to be somewhat expected because the body has yet to get acquainted to the new rerouted vasculature, so they are not overly concerned but want to keep his bp's under 130/70. They also started Braden on a Clonidine patch which slowly releases medication to help decrease blood pressure over a period of 7 days. The vascular team was suggesting to remove the NG tube and transition his pain control method from an epidural to a PCA pump with morphine and to also allow him to take clcear liquids. We also need to get him up and moving about to help decrease the swelling in his legs. So at this point the Vasscular team had to run by their recommendations with the actual surgeon who performed the surgery and then the PICU team and a conclusion would be made. Now we just waited for the PICU team to round. The PICU team rounded and the recommendations made by the vascular team were also agreed upon with the PICU team and we just had to wait to hear from Dr. Stanley(the surgeon) to give the final ok.......and he did. So......first the NG tube came out of Braden's nose and he was quick to drink some apple juice...then we transitioned his pain control and he also was able to dangle and hesitantly stand at the side of the bed and then daddy picked him up and they cuddled in the chair for about 4 hours. At this point I was able to go back to the hotel and freshen up and run to the store( Target of course :) for a few things we needed. When I returned to the hospital we got Braden back to bed however he was having much difficulty standing and walking due to the swelling and tightness in his lower legs, so we are trying to work with him and his movement but he is not having it so we will be working with physical therapy in the morning to help with his mobility. Other than these milestones we are still in the ICU and just waiting. Braden is continuing to get more strength day by day and he is just amazing to watch his strength and courage!

We continue to rejoice in the smallest of accomplishments and will continue to keep everyone updated.

Love to all who read!