Hitting the Reset Button

It’s been a bit since I’ve written a post as Liz has been doing an amazing job of caring for Liam at the hospital over the past week. But she is passing the reigns over to me for a bit and heading back to Colorado as we switch roles to give our kids the chance to spend time with both of us. It has been a much needed day together for Liz and I here at the hospital, because as we have learned so vividly over this past stretch our two heads together is certainly better than one. That being said, we wish it would have been a day of preparing for the long drive home. Instead, Liam told us that his body had other plans in mind and we have hit the proverbial reset button on getting his gut back restarted.

Over the past couple of days Liam has continued to struggle with pain, nausea, and vomiting and understandably so. His little body has been through a lot and continues to recover from a very extensive bowel obstruction and subsequent surgery. Then on top of that, he has been pumped with IV fluids, nutrition, and almost too many medications to count as they try to help his body heal and stay protected from other potential complications. The result, unfortunately, is that through vomiting his body is sending us the clear message that we are pushing it a little too fast and a little too hard. Thus, according to his doctors, the best solution is to essentially restart the process of easing his way back into food via his g-tube, and this time around we will focus on a slower and more gentle approach.

This was tough news for us emotionally. Liam has already been in the hospital for over ten days and the logistical challenges of that hospital stay being 900 miles from home has added to our stress. As some of you likely know, hospital time can make you feel a bit crazy and so having to shoulder that burden alone for so much of it can feel quite heavy for Liz and I. On top of that, Aidan and Emma are trying to process all of this as well. Aidan, with his typical joy, love and precious naivety, seems to be taking it all in stride. Emma, on the other hand, is struggling not to have us all together. That suffering pulls our hearts in yet another direction as it isn’t a suffering we can easily explain nor fix.

In the end, today was a day of resetting our expectations for this stay and better understanding the road ahead is longer than we had hoped. The doctors and staff in general here has been amazing, and they all assured us that this journey for Liam’s recovery is neither surprising nor concerning to them based on his medical complexity and the extent of what he has gone through. On a positive note, he had much longer periods of being more himself today, which gives us some hope that maybe his pain isn’t quite so high and that the coming days we can see more success on increasing his g-tube feeds.

All in all, we are settling in for at least another week here in the hospital at best. We will hope and pray for that best case scenario, of course, but there are others where that week extends into multiple weeks should Liam continue to struggle with tolerating his feeds. In the meantime, Liz is going home for some much needed time with Aidan and Emma while I will begin my shift here at the hospital with Liam. Your prayers for our family are so deeply appreciated and we continue to marvel at our amazing village. We truly couldn’t do this without you all.