Back to UVA once again

We're spending this rainy afternoon trying to make space for our heads to stop spinning from the morning’s appointments at UVA. It’s not that anybody said anything surprising at the appointments; it’s just that they are always an ordeal.

There were 3 appointments: one with the pediatric G.I. specialist, one with the pediatric surgeon, and one with an x-ray machine.

The G.I. specialist confirmed the consensus that has been building, namely that although no one can guarantee improved growth with a feeding tube they could at least be assured that adequate nutrition is available to her. We were more or less satisfied with their explanations as to why the feeding tube usually works and why complications are likely to be minimal. As such, we really need to give it a try, and it is their best recommendation at this point. He seemed kind and competent.

The surgeon went over the procedure with us and it sounds pretty straightforward, except that she has exceptionally thin skin (“not robust”, he put it), which could complicate healing, but didn’t seem prohibitive to him. Also very kind and competent.

Last was the upper G.I. imaging appointment, for which Nora’s milk intake had to be cut off for a period of time prior (making especially the last of the first two appointments rather harrying). She finally gave in to sleep and awoke in the waiting room before the upper G.I. Surprisingly she was quite pleasant until once again stripped and put in multiple uncomfortable positions. The poor little girl had to drink barium while strapped to a table with her arms above her head (making hand chewing, a favorite pastime, especially when famished, impossible) and then pose for pictures of her guts. All told, it reassured the professionals that her anatomy will support a feeding tube, while confirming everything she already believed about bottles.

Nora is scheduled for surgery to implant the gastrostomy tube in about 2 weeks, on Thursday May 8^th. She’ll have to spend about 4 days in the hospital. There is a certain comfort in knowing the next step. Now we can plan for something. It’s too early to know whether or not the uncertainty we’ve been living through will be alleviated in the time following the surgery, but we hope that at least our schedule (including sleep schedule) will be normalized somewhat. Dr. Braddock, the geneticist, continues to try to dig up information and photographs for us to use to be able to become acquainted with our daughter’s probable physical future, for which we are grateful. He remains in touch with us consistently, including stopping in to see us two times today during our other appointments, even though we had no scheduled time with him.

To help give you a visual picture of our morning, imagine two adults walking into the halls of the UVA hospital complex with apprehensive looks on their faces, one carrying a scrawny but alert baby, and the other with three overstuffed black bags over his shoulder (badly in need of a donkey). Then picture the two trying to comfort a teary, hungry, exhausted baby while she’s being poked and prodded and procedured, while simultaneously attempting to converse intelligently with the doctors and remember all the questions they came with. Lastly, picture the trio exiting the structure and heading toward the parking garage. The faces of the adults show exhaustion, but relief. The appointments are over, and the baby has been fed. They are headed home.

Thanks to our friend and neighbor Kristin, Kali enjoyed her morning unreservedly (and we enjoyed fresh cookies when we arrived home!). Thanks for caring, Jason