Weaning sedation medication has been put on hold while we try to figure out Rowan's blood pressure issues.
They've been trying to switch him to an oral medication, but he keep fluctuating. His pressures get too high, so they turn the IV med back on and up the oral med, then they get way too low so they turn the IV off. Trying to adjust may take a few days, but we have to get him at the right management level on medications he can take at home.
His blood pressure fluctuating so much with the meds could be just that - meds. It could also be a few other super scary things I refuse to acknowledge until they tell me they suspect for more reasons than "let's list everything this could be to make sure we aren't missing anything".
So today (and probably a few more days) will be spent on fixing cardiovascular issues. In this world we do a lot of "one thing at a time", so once they get this done, they will switch over to weaning his meds. They want to make sure that his heart/circulatory system are working well before they add feedings or anything else.
It's hard to have two days with amazing changes and be promptly reminded that we are no way done. Because of the stress of changing blood pressures, Rowan has a little tube that pushes air through his nose in to help him out. It's barely doing anything, but hard to see when he was fine all by himself yesterday.
We had to send Evelyn home. In the new transitional room he is in there is barely enough room for my husband and I to sit, and certainly not enough for Big Sister to stand, draw, read books, or even watch a movie - so she can't really visit him anymore. We're both really down about saying goodbye to Evelyn for a while but are trying to remember that this was a step towards home that needed to happen.
We are going to talk with the doctors about what the future looks like for us. We want to know if we will need to be back in St. Louis in June for Rowan's next surgery. We want to know if it is possible for us to transfer back to Tulsa for the remainder of Rowan's recovery once his current blood pressure debacle is finished.
Rowan is 2 months old today. He weighs around 11 lb 4 oz.
Two Month Developmental Checklist I Googled:
You makes sounds like “aaaaa” and “eeeee” when I make those sounds to you. - Check
You smile when I speak to you. - nope
You like toys that make sounds. - do your pumps/monitors count?
You lift your head and shoulders up when lying on your tummy. - Um...we'll figure this out when we can let him lay on his tummy.
You hold your hands and feet. - when they aren't restrained or attached to IVs? You do hold your hands sometimes.
You try to hold small toys with your hands. - Does trying to yank out tubes count?
Nothing will come easy for this poor guy - except love. He's got lots of that.
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
He may be behind for a bit, but in 2 years I'm sure no one will be able to tell all that he's been through. He's been a champ so far and I know he'll continue to be, so he's not going to let his sister run around for too long without him :)
ReplyDeleteYeah, I keep reminding myself that he slept for the first 6 weeks of his life - and when he's awake, he's still sedated. He will have to develop at his own pace for a while. Plus, we have to do this again in 4 months. That first birthday party will be a huge deal.
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