Ups and downs

So sorry it has been three days since my last post. Life is busy as I'm sure it is for all of you as well. But I do want to keep everyone updated so you know how to pray and just so you can all keep loving on our Brinley!

So, recapping recent events: Wednesday she had her feeding tube "installed" and her fundoplication performed. She is at full feeds and off drugs. Her ventilator settings were lowered on Friday and late that night about 1AM she had another one of her big desat apnea type events. They raised her rate back up to 30 and decided they would contact neurology again to get them to investigate further whether this might be some sort of central apnea disorder. They would wait until Tuesday (tomorrow) to do that because of the holiday weekend, unless anything more critical happened with her. On the higher rate she was fine but it was pretty discouraging because we were hoping the surgery had fixed the breathing issues. On Sunday we had a great day with her as Sarah and I got to visit Brinley together and get some good time, along with Sarah's Aunt Eileen. When we got there we learned they had lowered her vent rate to 12, following a consult with the pulmonary doctor. He thinks the apnea may still be related to reflux despite the fundoplication, which is actually encouraging if you can believe it. After we bidded...bade...bad adieu to our littlest girl that afternoon we felt much less discouraged than we had after hearing about her desat. We called to check on her that night to see how she had done on the new lower vent setting and learned that shortly after we had left she had another big desat apnea event at about 4PM; it was the only one, however, and they kept the setting at 12. Cut to today when I visited her for about an hour in the afternoon and just a short while ago when I called to check on her (about 10PM) she still has not had another big desat event, so that is encouraging.

If I were to speculate on causes of her desats from what we've observed ourselves and/or spoken with others about I would optimistically say that she was still recovering from the surgery and maybe there was still some swelling that could have been triggering the apneic response or that her body just needed to adapt to breathing more on its own after relying on the vent. On the more pessimistic side it could still be a neurological disorder yet to be discovered. The pulmonary doctor also is recommending that Brinley go home with respirator assistance, as opposed to just a mist collar. There are a lot of mixed feelings about that but the bottom line is the old adage: better to have it and not need it than to need it and not have it.

On the home front, everyone's health is improving. Sarah still sounds hoarse and needs a lot of rest but she is definitely sounding and feeling better. Alessa is also much better. Cailyn still sounds hoarse but is not really showing and more signs of her sickness getting worse. I think I've managed to avoid getting anything that the girls got :)

We are doing well but are busy trying to learn everything we need for bringing Brinley home, getting the house ready, taking care of our kids, figuring out all the contacts we'll need to manage for follow-up visits, home visits, who is responsible for what part of Brinley's ongoing therapies, procedures, testing and what-not. Sarah is the organized one so she is mostly handling that part of it. Pray also for wisdom about the upcoming wedding of Sarah's brother Sam and if/how one of us can attend (it's in Michigan).

Love you all and appreciate you taking the time to read my loooong post. I still haven't mastered the art of the short update. We continue to thank and praise God for all the blessings of peace through this adventure. We are learning to be still and know that He is God, and a bigger God than we often give Him credit for.