A lot of you have asked for an update- there’s not a lot of new news, because today has been just a waiting day. Since they don’t do the Upper GI or Swallow Study tests on the weekend, there wasn’t much to do today except keep Grayson comfortable and hydrated through the IV.
We did talk to our favorite doctor this morning, who sadly won’t be on G’s team of doctors anymore. The team decided not to give him any nutrition today through the IV since it increases the chance of infection. Tomorrow we definitely will have to get some nutrition in him, either by mouth or tube- which will be decided by the tests. The doctor also mentioned she was putting a genetics consult on a “wish list” so we may or may not get to see a geneticist while we’re here. She said since Grayson has so many issues, we probably won’t be able to address all of them during this stay, but we will be pointed in the right direction and will have a plan by the time we leave. I hope so.
Today Grayson was a little trooper, especially for a little guy who hasn’t eaten in basically 4 days. He still has his ear infection and it’s bothering him, and his arm was still puffy all day. He just rolls with the punches though. My biggest complaint is his stupid IV monitor which goes off nonstop for no apparent reason. Last night we were up from 1-3:30 am with it going off about every 2 minutes. Maddening. Grayson is asleep now and the monitor is quiet- let’s hope it stays that way!
Thank you all for your continued support, prayers, visits, calls, comments, etc. We are so grateful to each of you who cares about our little boy.
Hopefully I’ll have a big update at some point tomorrow!