Today it’s finally Ava’s turn to make a trip to the OR. We had to cancel her January cleft repair surgery due to a pesky lingering cough and finally got it rescheduled for today. She also just got ear tubes put in as well. How easy it would be if this was the only surgery we had gone through but I think Clay and I both have some PTSD with the Children’s Mercy surgery waiting room as we never got the news we hoped for here.
Lydia remains stable but has had her up and down days. She is still on Norepi to keep her blood pressure up and is being kept on the paralytics on the vent. She had a cardiac cath done last week which showed higher pressures and less perfusion to her lungs which is why she’s having trouble keeping her sats up. It sounds like we’re going to be putting the esophagus on hold for a little while and have her heart surgery soon. We’re not sure when but likely this month. We had originally thought it would be around 6 months so she’s done well to have been so stable so far. As for the esophagus, we’re waiting on more studies (a CT today) and more discussions from all her docs to decide what the best course of action to take is. While I desperately want to have her home, I think the only way to have this done in the near future is to likely go back to a spit fistula which reverses the surgery she had in January. We’re discussing her case with the Ethical Advisory Board to help determine what should be done and what is in her best interest. These are such hard decisions to make as we are weighing in her neurosocial development along with what can best be done to have a normal life of eating and swallowing. We never dreamed she would be in Boston this long and have all the set backs we’ve had.
Please keep the girls in your prayers. I am confident Ava will do fine although she may be on the cranky side with 2 weeks of a liquid diet, elbow restraints and the removal of all her favorite toys that go into her mouth. It is going to be another difficult month for Lydia and we pray we can be guided to making the best decisions for her.
Thanks for the support!
- Posted in: Uncategorized