A new direction

The last few days, I’ve had two major fears.

One: That something was wrong with her heart. Either rejection or something unknown.
Two: That we would assume it was a bug or virus and not explore thoroughly a heart issues and miss something big.

I know it’s dumb, but I just had this feeling in my gut that said it wasn’t just a virus or infection. Then they started talking about pneumonia, and I thought maybe, but it just didn’t make much sense either to me. Talked to the transplant team yesterday, and they were leaning toward the bug as well.

The echo she’d had on Saturday showed slightly decreased function, but they contributed this to the CPR (which is totally valid.) I requested a repeat echo for today to compare, and they agreed. Results of that are still pending.

I also got them to agree to do a repeat BNP. It was 2200 Saturday, down to 1500 Sunday, so they felt like that was a trend down enough to assume that it was elevated due to fluid and impact on her heart from CPR and weren’t going to check it again for a week. NOT cool with Momma, so they agreed to check it again today.

Well, our viral panel and most all the cultures have come back negative now. While she could still have something that went undetected… it is less likely of a possibility.

But while our echo results are still pending, her BNP came back today at 3800! A high sign (although not conclusive) of heart failure (and consequently possible rejection.)

They are going to immediately start a 3-day steroid course for possible rejection. We should know more when we see the echo, and I’ll talk to the transplant cardiologist for more direction and information tomorrow.

But… the last time this happened, we ended up ruling out rejection with a heart biopsy and instead did another open-heart surgery to fix something we hoped was the problem. She did fairly well after that, so we all assumed that was it.

But this just seems so similar to our experience back in June. I don’t want it to be rejection, and I don’t want there to be something else we are missing, but I also don’t want to overlook something that could be wrong. If it is a problem I want to fix it!

Then there is the whole extubation process that really had me in a tizzy last night. Yesterday the plan was to do CPAP trials all day and night, then extubate today.

But night doctors came on, and in rounds said, “Uh, no, she isn’t anywhere near being ready, it’ll be quite a few days yet. Even two more days is really optimistic.”

A very unChristian thought in me wanted to tell me where he could take and shove his negative attitude. I, obviously, did not say such a thing.

I think my frustration and nerves got the best of me last night. (Thanks to Melissa and an unnamed person for letting me vent last night… IT HELPED!)

Then this morning in doctor’s rounds, they said, “might extubate this afternoon, if not then tomorrow.”

Hmmmm…

Well, it isn’t going to be this afternoon. Even I knew that, because I can tell she just isn’t ready. We are cautiously optimistic that it might be tomorrow, but much depends on the echo and what we decide are next steps for her heart too, and how she does on her CPAP trials overnight

GOOD news (because I desperately need to report some of that) is that her chest xray looked better today and she is peeing like a champ. Her blood pressures are in the normal range after increasing her BP medicine this morning. And her Peek Pressures on the vent are slowly coming down.

Sad news though, is that she’s starting to lose some of her chub. She has one chin again instead of two! We *might* get to start feeding her again tomorrow, but again, this will depend on what we decide is the next step and the results of her echo.


*Note*

Please don’t take my ranting and complaining as a complaint against our hospital. One thing I’ve learned on this journey is that despite what we might like, doctors are HUMAN. They have opinions, sometimes differing ones, and much of medicine is about making educated guesses. Most of the time they are right on the money and save a ton of lives. Occasionally, they are wrong, and it is for this reason that I stay REALLY involved in Annabelle’s care. They know medicine… I know Annabelle.

But, I DO have to give her, and the doctors, and her condition, over to Jesus, because ultimately HE knows best!

I LOVE our hospital, LOVE our doctors, and LOVE our nurses (and LOVE our RT’s too *wink*) They truly fight for the lives of many children every single day, and I can’t sing their praises loud enough!

A picture of my little love… and a new sign I found at Lifeway for her room (made a book run because I was in desperate need of a book to read!!!!) It matches her room at home, and it just fit SO very well!!!!

Okay, it didn’t show up well, but it says, “I’m a princess and my father is the King of Kings” 1 Peter 2:9

She doesn’t like to hold still, and likes to try and pull her breathing tube out when she is awake, thus the attempt at keeping her arms down. It does NOT work very well! She comes loose often!