I wanted to give another update now that things have started to calm down. 

On Saturday we met with GI, pediatric surgery, and palliative care. Our palliative care doctor is here and I will never switch; she’s truly incredible. I think the common misconception with palliative care is that it’s end of life care, but that’s not the case. It’s very much quality of life care for those living with chronic, not necessarily terminal, conditions. I will advocate for their role all day long and we are so lucky to have an amazing pediatric palliative team locally. For the other specialities, Landry’s G tube was placed in Peoria so we are still followed by surgery here and we do follow with a GI doctor here in addition to Cincinnati. I guess I was planning for an event like this someday - established care in Cincy, admission in Peoria - and it just came much sooner than I expected. 

Our own GI doctor wasn’t on call over the weekend and, frankly, we have never gotten anywhere with others here so the ICU team said it would be a good idea to pursue a scope with pediatric surgery instead, which I was so appreciative of. I was persistent in stressing that we very rarely have this window of bleeding without having respiratory symptoms and it needed to be taken advantage of.  

All that to say, Landry went in for a scope with the surgeon early yesterday morning and did beautifully. We did confirm that her esophagus is tearing, likely in the same spot each time this happens, which is down low, almost where the esophagus meets the stomach. An episode or two of vomiting (it doesn’t take much at all anymore), opens the tear, blood runs into her stomach, and we start the vicious cycle of being unable to control vomiting and, consequently, being unable to control bleeding. We were saved from a transfusion this time only because her hemoglobin was high when we came in, so the drastic drop still kept us above transfusion territory. She dropped from 14.5 to 10 initially, then again from 10 to 9 and held steady there, thankfully. 

I am thankful to know what’s happening and where so we won’t have to continually wonder where blood is coming from each time. However, it’s discouraging that there’s not much that can be done. Superficial tears in the mucosal lining can’t be surgically repaired. If or when it becomes a muscle tear, that would be grafted from another muscle, but right now there’s nothing. Essentially, the only real “fix” lies with vomiting control and, between her dysautonomia and cyclic vomiting syndrome, is not easy to do. We are back to this being a neurological root that needs to be handled, apparently even more, aggressively. 

The one thing I’m feeling especially hopeful for is that the surgeon replaced Landry’s G tube with a GJ tube. It wasn’t painful for Landry as she was under anesthesia during the scope. Where the G tube has just one port on the outside that feeds directly to the stomach, the GJ has that plus a port and internal extension that feeds directly into the jejunum, which is part of the small intestine. The hope with this is to bypass the stomach to give it rest when needed and potentially to hydrate her without irritating the stomach when CVS starts. 

Ironically, I brought up the GJ tube in Cincinnati last month and there were several reasons that it didn’t make sense at the time, but enough of them had resolved that it makes sense now. All we can do is try and I am certainly up for trying anything, especially if it’s no extra pain or recovery for Landry. We started putting formula through the J tube last night at just 1/6th her rate and are increasing by 10 mL every four hours. It’s a slow process, but that’s what Landry’s body likes. I will take slow progress over backtracking any day! 

Overall, things are looking good. Landry was sitting up for periods yesterday and had her eyes open more than we’ve seen in several days. We are still on the critical care floor, but I could see us moving upstairs at some point. The only thing we don’t know is what caused it to happen this time. The respiratory swab was still positive for the coronavirus from last month but nothing new. That doesn’t mean there aren’t thousands of other viruses she could have, but being otherwise asymptomatic is puzzling. If it’s a post viral reaction or some sort of stress response from her brain, we’ll probably never know this time. 

I’ve also been laughing at the irony of traveling to Cincinnati last month for a potential scope that was never able to happen (although I’m still so glad we were there!) only to choose Peoria this time and finally have done what we’ve waited over two years for. It just goes to show that God puts us where we need to be, our only job is to listen. The decision of where to go Thursday night had me in tears, but I just couldn’t shake the feeling that staying local was the best choice for our family this time and now I know it truly was. I can’t say that it will be every time and I’ll probably always struggle with that decision, but I know we made the right one this time. 

Thank you so much for your continued prayers, texts, and encouraging messages. We love you all and are SO grateful. 

Lindsay