So here I am (finally) doing the update for last week's appointment. Not too shabby, eh?
Shelby's surgeon & hepatologist were both happy with her growth. Her wbc & platelets looked alright; nothing like we (us & them) expected after surgery, but we'll take it. The blood was flowing good through her shunt so she was taken off the Plavix - yay! Her Vitamin A level is quite low (always has been a battle to keep that up) so now she needs to add a Vitamin A supplement to her regime. Drop one pill, add another :-( Her oxygen (O2) saturation level was low, though. 90%. It needs to be closer to 98-100%. It used to be. 90% will get you put on oxygen if you are in the hospital. Not a huge surprise, but sort-of after her "normal" PFT readings in June. We were hoping they were a fluke, but when we got home we borrowed our doctor friend's portable oximeter. I spot-checked Shelby's O2 a lot. It wasn't good. It was not a fluke in clinic. In fact, after swimming (and then warming up) Shelby's O2 was only 84% :-( :-( :-( NOT. Good. At. All. This prompted me to call her pulmonologist's nurse and relay all this new info to her. She spoke with him and he ordered an oximeter for Shelby through home-health and wanted her cardiac stress testing bumped up from September. I got a call today that they had a cancellation tomorrow so we will be abandoning packing for a day - we move on Sunday - and heading in to Chicago. I don't know if we'll get the official results tomorrow, but Scott and I will be able to look at the computer screen and see what's going on. Unfortunately, we know too much about the medical world (for non-doctors, that is) and will be able to get a pretty good grasp of the situation. We need an answer as to why her O2 level is so low and most likely the answer is Hepatopulmonary Syndrome. Low oxygen saturation is the 3rd criteria that Shelby did not have, but seems to now. If she has HPS, then she will get put back on the waiting list and receive many exception points to put her high on the list. They don't mess around with HPS and for good reason. Low O2 sats can take a toll on your heart. Enough said.
Moving, 2 deaths from Durand church family this week and now this. Prayers for strength my friends, prayers indeed. Thank you.