12/30 update — Here’s Colby checking in on Everly this morning. (The squeaking is air leaking out of her breathing tube. That’s normal for how this tube is setup.)
Everly had her first injection of pamidronate today. It went well and this is really encouraging. She didn’t get any of the side effects that can be associated with it like a fever or drop in calcium. She reacted to it like a champ. That’s great. We’ll continue pamidronate treatment with her. This will hopefully start to strengthen her bones up to a stronger level as well as help with pain management. She is in pain because of all the fractures she has that are healing.
The team has been fiddling with her pain med levels and ventilator settings to see what she reacts to best. She currently does all her breathing and the ventilator kicks in when Everly needs it. This is proving best for her so she can breath as the pace she wants without having to overexert her lungs at the pace the ventilator wants.
Overall she’s been very stable today, with only a brief scare. We think Everly clamped down on the breathing tube when it irritated her, but once she settled down, her breathing became normal again. The Vandy staff were awesome during this time.
We continue to consult with lots of doctors and nurses and other folks at Vandy. Sometimes we get mixed signals and it’s hard to hear about worst case scenarios it’s good to have a plan for, but we’re starting to figure out the best way to fight for Everly and wade through the information. We have been building relationships with some really amazing care givers and minds. Plus, the brittle bone disease community has been a-maaazing. Colby texts many OI mothers daily and that’s one way we know how to ask the right questions.
Please pray that:
- Everly’s bones will strengthen
- that Everly will stay peaceful and calm so she’s better at healing up and breathing
- that we’re able to ween her slowly off breathing support, and
- that the team is able to figure out a safe way to add a IV into Everly without hurting her once we have to move on from the umbilical cord IV. We’re hoping pamidronate is strengthening her up for this bridge that could come a weeks time or so.
Colby, the family and I are exhausted but we are learning how to run through the walls we hit. Tomorrow night Colby and I will move to a hotel close to Vandy in order to still be close but get better sleep. Colby’s recovery from her c-section is going amazingly well. Being motivated to walk to the NICU gives her an edge over other moms recovering.
We continued to be amazed at God’s provision. We feel the love and support from family, friends and the Vandy team. We continue to thank God for bringing us this far. Thanks for fighting with Everly through your prayers and by living this with us.