Relief Pitcher Time

I’m sitting here with Liam this evening as Liz boards a plane back to Colorado. It’s tough to be separated once again, and it is hard knowing that this specific role of stepping into the medical world isn’t particularly a strength of mine. While talking with my good friend for a bit on the phone he came up with a great analogy for the situation, I am simply the relief pitcher trying to hold things steady until the closer can come in at the end of the game for the win. Liz, playing the role of the starting pitcher and the closer in this story, has done an amazing job of putting team Liam in a great position for the win and now the crowd will hold its breath while the reliever (me) is called in from the bullpen for the next few innings.

For all of you non-baseball fans, thanks for putting up with my sports analogy! To put it in other terms, both Liam and I will be missing mom over the next few days, but at the same time Aidan and Emma couldn’t be more excited to be reunited with Liz. Now on to today’s update.

It has been another relatively slow day here at the hospital, with lots of brainstorming happening around Liam’s nausea. We doubled his feed rate from 5mls to 10mls per hour. Doubling sounds like a lot, but to put things in perspective Liam was running at 160mls per hour prior to the surgery. Liam struggled with some retching with this increase, and also has had some moments of extreme agitation over the last couple of days around medication times that has the staff suspicious that he may be experiencing withdrawals related to some of his seizure medications. In particular, Liam is typically on a benzodiazepine called Clobazam which he is unable to receive via IV. Because of this he has been receiving Ativan in its place as a similar benzodiazepine. The thought is that the ratio between the two medications may be slightly off causing the retching and the extreme agitation, sweating, and overall discomfort around medication time.

Because of this suspicion we have done two things today in hopes of a more consistent happy mood as well as a reduction in the retching. First, we have slightly increased his Ativan dose to better mirror where his Clobazam was prior to surgery. Second, we have used Zofran to help with the other nausea symptoms we are seeing at other times in the day. Both of these changes are being placed in addition to the slightly faster rate. If we see him improve and have a good night then tomorrow we will increase the rate slightly again.

This continues to be a painful slow process filled with trial and error when testing different theories. Liam is a complicated kid, and it seems like every problem has multiple possible causes which makes things even more challenging. In the end, Liz and I are learning that this will indeed take time which is a hard reality to accept so far from home.

We had another special visit from Uncle Jake and Aunt Sarah which lifted all of our spirits and was a reminder that we aren’t alone on this crazy journey. Thank you all for the continued prayers and support. We are truly so grateful to all of you and we are so blessed to not be carrying this cross alone. May God greatly bless you and your family always.