We have had such a quiet three months with Landry that I almost forgot I had this page to use as a way of updating. I guess that’s a good thing! 

For those that don’t know, Landry was admitted to the PIC floor in Peoria on Saturday the 15th, which was her 6th birthday of all days. We came with another cyclical vomiting episode, turned GI bleed. We were at Disney on Ice for her birthday when it started and, unfortunately, our rescue meds bought us until the end of the show but didn’t do enough to stay out of the hospital. We have no way of knowing for sure, but it seems likely that the show was too overstimulating and it threw her body into autonomic crisis. Sometimes even good excitement can be too much, but there’s no way of knowing ahead of time what the threshold will be. 

It’s been a hectic stay with several things popping up in addition to what we originally came for. We got vomiting stopped about 24 hours later and were thankfully able to avoid a blood transfusion. Sunday night Landry had several prolonged staring spells and unusual repetitive eye movements so that earned her a 24 hr EEG, which was normal, Monday morning to Tuesday morning.
We attempted to slowly turn on feeds to her J tube without any success Monday, but since Tuesday we’ve been able to very slowly increase by 5 mL/hour every 6-8 hours. She’s at about half the volume she needs to be and 25% formula so we have a long ways to go.

Something that’s never happened before happened twice in two days this time. Two different IVs badly infiltrated and because of the fluids she was receiving, both times she had to have the antidote shots to save the tissue in her arm and hand. They do five shots around the injection site, but thankfully five people come in at once so it’s fast. After the last IV infiltrated, we haven’t been able to get a new one started. Several teams tried in seven or eight places yesterday with no success. Our only option at this point is a central line, which we are trying to avoid. As long as her vitals are stable and she’s having wet diapers, we are planning to just increase the volume to her tube as tolerated even though it’s the very bare minimum. She had some low blood pressures overnight, but that still seems like the best plan for hydration.

On Tuesday Landry had some mild respiratory symptoms start and after vomiting the way she did for so long, we always worry about aspiration. A chest x ray was clear yesterday and because we weren’t able to draw new labs either (no good veins for that either), I asked this morning to repeat the respiratory panel, which this time was positive for rhino/enterovirus. In most of us that’s just the common cold, but we know nothing is common with Landry. I am hoping we’re at the peak of that now and don’t still have some time of getting worse before she gets better. 

Overall things are in a better spot than they were Saturday and Sunday, but we will be here for several more days at least. It seems like it’s been one thing after another without much progress, but I keep reminding myself that slow progress is still progress. Landry runs this show and we are all on her schedule. :) 

Thank you for praying for Landry and our family. I just FaceTimed Chandler; she’s in good spirits and ready for spring break. Landry always looks for Chandler’s voice when she hears her on the phone. The two of them love and miss each other so much, but both handle it all so well. We’re hoping for more progress tomorrow and I’ll update as I’m able to. 

Love,
Lindsay