Friday, May 26, 2017

Good news... with whiplash

The last two weeks have been nothing short of an adrenaline junkies roller coaster ride. In March we were told that Parker's numbers were stable enough that at this rate of progesssion, we had years before needing to to take action. Two weeks later, Parker started with the beginnings of the stomach virus. Fast forward to May, and the news we got was heart breaking. In a months time, a single virus forced his portal hypertension to decline significantly. We were told that a specialist at CHOP needed to review Parker's file and evaluate him for a procedure. For a very major procedure that we thought we had years to deal with. Yesterday we spoke with the renal transplant team at CHOP, and our appointment dates were set for July 18th. We finally let it settle in, and accept the fact that this is our fate. Today I spoke with Dr. Arias, our hepatologist here in New Orleans. He and Dr. Rand had the opportunity to spend a lengthy time consulting and  reviewing Parker's records. After doing so, Dr. Rand has decided that Parker does not need to be seen or evaluated in Philadelphia on July 18th. She feels that we are not yet critical and that Parker needs to grow some more before a surgery of that capacity. Especially being post-transplant. The arteries that they would be redirecting have incurred a lot of trauma, especially during transplant. They need time to heal and settle before being cut into again. She also believes that there is still the possibility that his body could recover and numbers could improve the further we get away from the norovirus. She advised that at this time she would not do anything different than we are doing now. The plan is to continue monitoring every 6-8 weeks with blood work and ultrasounds, and to eventually get a CT angiogram locally to get a better look at things. There's no definitive timeline as to when we will need to take action, or what the plan of action will be at that time. We are extremely grateful that they feel Parker is stable at this time, and that surgery is unnecessary, but the whiplash from the last few weeks and the unknowns have us pretty wrung out. Thank you everyone for all of the prayer! We appreciate each and every one of them. We will keep everyone updated as we can. 

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