16 Mar Update
Just a quick update tonight to let y’all know that we still don’t have an OR time for tomorrow. Since removing his line should be fairly quick, he will likely be squeezed in between procedures tomorrow, and our time could change anyway. He had a pretty good day today. We increased his calories to 24kcal/hr around 4pm, so he got about 4 hours of it. He didn’t increase his frequency too much today, but he took a downturn in his processing (a bit waterier than before). We can’t decide if he’s bored or tired half the time, probably a combo of both. I think we are all feeling that way.
I had a very nice conversation with our admitting GI doctor, who…GET THIS…called me from home at 9am on a Sunday!!! Can you believe that? Just to see how Keegan had tolerated the formula changes so far! Such an amazing man. Anyway, I digress. I told him how we felt some of the team were thinking Keegan would just take off with the feeds and be TPN-free by the end of the week. As much as we want to be optimistic, I told him that Gray and I just didn’t see how that was possible, given everything he has been through and shown us in the last 7 months. His response was very reassuring. He said that no one truly thought Keegan would be able to go without a permanent central line, but (1) it never hurts to stay positive, and (2) they have to try the least invasive methods first, i.e. peripheral IVs and a PICC line. He assured me that they would not let Keegan lose too much weight, get dehydrated, or be in pain. Definitely what I needed to hear as we head into a very uncertain week.
We will let you know how tomorrow’s procedure goes. Please pray that Keegan handles the anesthesia as well as he usually does and that they are able to place two IVs in good veins. For the rest of the week, we would ask that you join us in praying to clear Keegan’s infection and for strength and comfort for us all as we decide what is the next step for our Bug. Lastly, we would really appreciate it if you would keep our little friend, Aaron, and his parents in your prayers this week. He had his second (and hopefully last) heart repair this week here in Boston, and he is experiencing some bumps in the road. Please pray that the uncertainties of this weekend will come to light soon, for clarity in his treatment, and that he gets to board that plane home as soon as possible! Thanks so much.
Don’t miss the new pictures we posted of Keegan’s first week in Boston. Also, scroll down the page to see a video from a few weeks ago that we just posted. It will definitely make you laugh!