Whew. January has come and gone, and now we’re well into February. What a whirlwind the last few weeks have been. Here are the highlights:

1. Benjamin had COVID – tested positive on New Years’ Day, and was sick for 2 weeks. Miraculously, novody else in the family ever got it. 

2. Benjamin started having issues with his oxygen levels, and so the team did a CT scan to make sure the shunt was working properly. (It is fine, whew!)

3. The CT actually showed that Benjamin’s heart is doing great, so the team started discussing a trip to the cath lab to check out the status of everything.

4. That excitement was derailed by a blood infection. The source was likely his pic line, so he got a new one placed and the fevers almost immediately disappeared. A skin infection around the VAD site also developed around the same time, although they identified different bacteria so it is unclear whether the two were connected. They’re both resolved/resolving, and he’ll likely stay on proactive antibiotics until transplant to avoid further infections. 

5. Once the blood infection cleared up, they took him to the cath lab. His heart has actually shown some growth/improvement! There was discussion about possibly changing course and attempting a non-transplant surgical option, but that was ultimately decided against. Ironically, because his vitals are currently so good with the VAD (and he is fat and happy), they don’t want to rock the boat and take the risk(s) associated with the other option. So we are still full steam ahead on the transplant list. 

6. Not in time order, but the bright spot of January was our trip to Disney! My parents took us, along with my sister’s family, to Orlando for 3 magical days introducing all of the other grandkids to Disney. Now Marjorie keeps talking about how she will take Benjamin to Disney and all the fun they’ll have. 

Please pray that we get “the call” soon, for no more strokes or further complications, and for bolstered faith for both Matthew and me. We are exhausted and homesick, but still so incredibly thankful for our miracle baby and his hilarious sister!