No real answers still. Attending said something about maybe it being “slow grow” pneumonia or something to that effect, I guess that means that it slowly happened over time and finally caught up with her, I dunno. He was still “guessing” at this point though.
All respiratory/blood cultures are still pending, as are the virus panels. I’m waiting and keeping patient until we get those back and until I can talk to the transplant team. So really, there is still no firm idea of what went wrong.
Yesterday, we didn’t wean the settings on her vent at ALL, meaning she was on still very high settings and doing very little of the work herself. The team felt yesterday that the pressures they were getting from her on the vent were still too high to wean.
Last night, however, the “overnight” team didn’t quite have the same take, so we weaned the settings overnight, which Momma was fine with! Although… they had planned to cpap trial today and extubate later in the afternoon… which while it would have been nice, Momma was NOT so fine with, as I really don’t think she is ready.
Day doctor’s today agreed…we’ll do CPAP trial today to exercise her lungs, and try to condition her to hopefully extubate tomorrow.
Our other issue is still high blood pressure. We started her on BP medicine, but it barely made a dent in it. We are turning off her sedation/pain drip today, as a side effect of that is high BP, to see if that helps. They will give her a different med every few hours to help control her pain and keep her calm. Please pray for this, as I do NOT want her to be hurting and in pain!!!
That, and she keeps wiggling… A LOT! They have to retape her tube at least every 12 hours because of miss wiggle-worm.
That’s really all the update, unfortunately. Her xray was still not stellar, but given that we weaned the vent, it is to be expected.
Specific prayer requests:
- That her lungs get clear
- She ROCKS her CPAP trials
- Her blood pressure normalizes
- She can extubate and STAY extubated tomorrow!
- That we figure out what is wrong and fix it so it doesn’t happen again!
- For my other 3 daughters…they are troopers and with Grandma Johnson (my mom) right now… but prayers for them are really appreciated too as we figure out how to meet their needs over the next week or two as well.
- For Scott and I as we try to manage with Annabelle in the hospital again.
- For Miss Anna Reese, who is in the hospital still too, that her lungs get strong and better so they can go HOME!
Speaking of Anna Reese… we are neighbors now! Everyone kept teasing that last week, when Annabelle came in for one night, that it was just because Anna Reese came back the night before and they wanted to be together. But when she realized they were on different floors, she shaped up so she could go home the next day.
So now, evidently she realized that she had to “go big or go home” and REALLY pulled a stunt so she could be in the ICU with her friend.
So we thought, hey, let’s give them what they want for a few days, so now they are next door to each other and sharing a nurse! I see some play-dates in their future so they don’t feel like they need to go to such extreme measures!
Picture below: We finally got our “stuff” from home… and Annabelle feels SO SO SO much better with her bow, dress, dolly, and fluffy blanket!!! (Mommy feels better too as she now has clean hair and clothes again too!)
still praying. she is so cutee!!
Waiting can be sooo tough. Praying you have results soon–along with some answers.
Lifting you guys up in prayer.
She looks so much better…especially with her stuff from home. Many prayers for Annabelle and your whole family.
Keeping your family in our thoughts and prayers Krista. ((hugs))
Praying for the doctors to have wisdom, for your whole family to have peace, and for Annabelle to come home soon.
She does look better with her own "thingies" around …
Hoping and praying results will come in soon and all will go well!
Still praying Krista!
Clean hair and clothes make such a big difference, don't they?! Praying the answers become clear soon.
I'm praying for your precious Annabelle this very moment – for ease of pain and discomfort – and for the Lord's peace for you. My momma's heart aches for your momma's heart. Also praying for your other 3. I'm sure it must be difficult for them when their baby sister is struggling. May the Lord give you and your husband wisdom and extra measure of His grace. May he abundantly bless your family.
Praying, Krista! Setting our upstate prayer groups on it, too. I'm Celt enough to have real good faith in mother's intuition.
Hang in there. Know you're loved.
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