First, we’ve had too many tears here the last few days.
Funny story to make you smile.
Middle of the night last night, about 1 in the morning, Annabelle was super fussy. In my dazed state, I got up to put her binky back in. The nurse walked in shortly after.
I’m standing there, half asleep, feeling around her head, around her bottom, around her feet, for her binky. It was nowhere.
Nurse looks at me funny. “What are you looking for?”
Groggy-Krista glares at her. “Her dad gum bunky.”
Nurse clears her throat. “Um…”
Then I see it. It is on her stomach, but I feel like I’ve just seen it move.
I look back to the nurse. “It was in her mouth the whole time wasn’t it.”
The nurse gives me a sympathetic smile and nods.
I gulp. “I should probably just go back to sleep, huh.”
The nurse nods again. “That might be a good idea.”
I stumbled back to the little hospital couch slash bed and plopped down, pulled the covers up, and blissfully let the nurse take care of my baby, all the while thinking that I would probably use this as a funny story for my blog tomorrow.
So, please pray for Annabelle and doctor’s today. She continues to run fevers, pretty much constantly. They go down with tylenol, but go right back up. Before, I was disappointed that they were keeping her here. Now, I’m really getting worried. No cultures have grown anything so far, including a check to make sure it isn’t just a virus, and she is running them even though she is on some pretty powerful antibiotics. They are getting more cultures today… but not sure how that is going to help considering she is ON antibiotics and she’s run fevers for weeks with no culture growth. But still, it’s protocal, and will rule out anything “new”.
I’ve been brainstorming of reasons for the fevers, along with the doctors. Their idea: It might be her PICC line. They say sometimes an infection with form around a line in the body, but occassionally blood cultures will still show negative even if there is a small infection present causing a fever. So, pulling the PICC line is an option, just means she’ll be stuck everytime we need a culture or to give her antibiotics in the future. But that’s better than running fevers… and it needs to be pulled before we go home anyway.
Option I thought of in the middle of the night is a reaction to a medicine. I dunno… it just seems like she has tended to run them between 1 and 4 in the morning… almost every time. (Until the last two days when she has run them constantly!) She gets a big pile of meds at 10:00 PM so the thought was maybe it was one of those?? The only one the doctor and I could come up with as a possible culprit at 3 a.m. this morning (I was a little more awake than at 1…) was her enalapril, her heart medicine. She switched to this back in the PICU back in November, and she’s been running spotty fevers for over a month now. She never handled the medicine well, and is on a super small dose, but if she is reacting to a medicine, this has the biggest potential of being the problem one. Not sure what our options are if it is. We could take it off… but this helps keep her leaky valve at bay, and it’s already moderate to severe. We could go back on her milrinone… but that keeps us at the hospital until she can come off. Thank goodness for doctor’s who know much more than I that will make the decision! (although they might say I’m out of my mind and it isn’t the problem and that I need to go back to Mommy land…)
But right now, my poor baby is miserable and I’m desperate to find something that will help!
Your prayers for my little love and her fevers are appreciated!!
OH! And depending on her fevers, we MIGHT go to Cath lab this week for her pre-Glenn cath. Don’t want to do that if she has an active infection though, but the thought yesterday was to go maybe Tuesday or wednesday. So that still remains to be seen. Will know more on doctor’s rounds today.
Pre-Glenn cath does not mean she would get her Glenn done right away (not necessarily anyway) but will give them a better idea of our roadmap for the future, doing the Glenn earlier or waiting till spring, and there is also a possibility that we have a leaky valve repair before we even do the Glenn. This is all pending the heart Cath. As much as I want my baby home, I want her BETTER too… so bring on the Cath!
Praying for your sweet baby girl. Fevers are no fun at all. Praying for wisdom and guidance for the doctors. Cute story about her binky 🙂
I love how you can find a funny moment in the middle of this journey. I'm praying for the drs to find what is causing the fevers and that they stop. Also praying for strength for you and your family.
Continued prayers for your little princess. May her medical team discover the reason for the fevers so they can eliminate them.
Praying for you all…
And you did make me laugh with your story. Reminds me of when I am looking for my sunglasses and they are on top of my head.
Hugs and blessings,
Praying for some answers! I love your funny moment. I remember one night being so tired that I picked up my crying baby to nurse and realized too late I was trying to nurse her backside! Mommy's need sleep!!
Love the story! I can almost visualize it happening. I don't function my best either when operating on very little sleep.
We are still praying for precious Annabelle and all those who love her and are caring for her.
I love the binky story! LOL
Praying for the fevers to go away! And for the doctor … may God give him the wisdom he needs to find what going on.
Hi Krista, I have been reading your blog for a few weeks now and am finding comfort in someone else going through similar trials to us the last 7 months. My son is also an HLHS baby and has a leaky tricuspid valve. The first treatment was to put him on Enalapril for him too. He was super fussy and on second dose, his face swelled up and turned REALLY red…so not the desired result! His cardiologist put him on a drug that he said they are only just starting to use more regularly, called Losartan. It is doing the job wonderfully AND he is back to his happy functioning self! Just a thought for you if you wanted to see if they could change her med and see if it helped…I'm praying for Annabelle to become stronger and stable enough to handle the cath and her Glenn.
Krista, Thank you for sharing yours and Annabelle's heart.
They sure have touched ours.
I stand in the gap and agree with these prayers.
I speak a healing prayer and thank our heveanly father I speak to feaver to be gone and for Annabelles heart body and soul to line up with the word of God and be made whole. Anabelle i speak psalm 91 over you in the name of jesus be made whole..Thank you dr Jesus.Amen
I pray this be seen from love please.
Thank you for sharing so we know were to pray. We will continue to pray for your family. I see Gods Love when i saw the pictures you are blessed and such a blessing.
I'm praying, Krista.
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