It’s a hard day.
We are back in the PICU. She had some spots of collapsed lungs in her xray this morning, and was continually dropping her sats, so they made the decision to come back to the PICU. Thought is that they can have better, sooner meetings about her care down here, and have all the “big guns” (my wording) to meet and talk about Annabelle and how to get her past this.
Plus, we put her back on vapotherm to help open her lungs back up. I really think once we get them “dejunked” and opened, she’ll be able to do better.
They will be meeting soon to make decisions about her care, most importantly whether we
- Do the diaphragm placation surgery (there are pros and cons to having the surgery done, but she definitely has a paralyzed diaphragm.) We aren’t sure this is the problem or how much it is contributing, but it is definitely possible that it is contributing. But it’s also possible that she will grow out of it.
- Keep her here and keep trying to get her off of oxygen or
- Get her stable on oxygen and send her home with oxygen.
Maybe there are other options, but those are the ones I know of at the moment. There are lots of discussions to be had.
They usually don’t send transplant kids home on oxygen… because they usually don’t need it. And it’s a pain in the butt, to be honest. But these are all decisions that need to be made, and there is no right or wrong answer.
Please be praying as we listen to all the different doctor’s opinions, and that we can most of all make the right decision for Annabelle.
On a slightly positive note: Annabelle is doing well! She was smiling and making fun noises with her mouth (she’s found that she can cluck and make kissing noises and thinks it is OH so funny!)
Your continued prayers are appreciated and coveted. Thank you SO very much for walking this journey with us in prayer. I can’t tell you what it means to us. I have a lot more I could say about this… but I’m emotionally spent, so I’ll save my thoughts for another day. But most importantly: God is still with us. And God is still good.
I'm so sorry, Krista. We'll ask our small group to continue praying tonight, too.
Awwww Krista, Maybe Annabelle was just missing her nurses in picu. I pray for your continued strength and wisdom.
Yes He is! Praying, praying, praying!
I will let my bible study women know and we will all be praying for you guys!
Keep us updated,
Sending up prayers for Annabelle. Keep praying and god will lead you on what to do. Praying for a speedy recovery and home soon.
yea..O2 at home is a pain…but as I recall, you have to stay home so it wont be that bad…plus being home(once she has adjusted) will cause her to do more and make her lungs fully inflate.
We go everywhere with O2…carry 34 pounds of kiddo (no longer walking) and 20 pounds of O2 tank!
Oh God…grant wisdom, grant full healing….bring peace to Krista and Scott.
We will definitely continue to keep you all in our prayers. Thank you so much for the updates and we will continue to lift you all up in prayer….
Hi Krista –
Praying for Annabelle, as well as you and Scott.
Praying for continued strength. Love you guys.
Praying for precious Annabelle and you and your husband! God bless you and your little one, abundantly!
What a tenuous time for you all. Praying the Lord protects little Annabelle under His big Daddy wings and lifts you up with strength and endurance.
While I'm sad to hear Annabelle is going back to the PICU, I'm glad to hear she is in good spirits. The prayers will continue …
Thanks everyone for your prayers! She is stable tonight, but after 8 hours on vapotherm, her lungs still hadn't inflated like we would have liked, so they have put her on CPAP, something that she AND momma don't care for. They were going to put her on bi-pap (a mask that covers both her mouth and her nose) but momma put her foot down as I knew she wouldn't be able to take that for more than a few minutes.
Please continue to pray that her lungs open up! We are also staying here tonight as bad storms/tornados on their way. Please pray for safety of my family, specifically my daughters and mother-in-law! We feel fairly safe at the hospital…
I'm so sorry to hear of the setback. That has to be so discouraging. I'm happy, though, that Annabelle is in good spirits. Continued prayers for all of you.
I know this is disappointing…I can't even begin to imagine. I will be praying!
I'm praying still. *hugs*
You are right….God is still with you and God is still good! Praying for little sweetheart Annabelle and for your entire family to be encouraged. We will pass this curve in the road too!
God is able. Praying for wisdom for you and your husband for the road ahead, more importantly praying for God's healing hand upon your sweet angel, Annabelle!
Well that news just stinks. I'm sorry for you guys. Annabelle will continue to be in my prayers as well as the rest of the Phillips clan.
Continuing to keep precious Annabelle and your family in my prayers. Praying for all the decisions to be made and for healing for Annabelle. I know it's not the same for children with heart transplants versus adults, but my dad did quite well right after his transplant and after a few days had a major setback and had to go back on machines. But, he rebounded and did well after that. Praying you feel God's continued presence around you.
When Annabelle is in 2nd grade and sharing a show and tell item in front of the class, all this will seem like a beep on the radar, maybe! Anyway, that was meant to encourage you.
Lord, please give Krista strength, and renewed strength, and strength through rest, too, Lord. Help the sleeping time chair to become a haven of Your arms, the beep beep beeps to become the sounds of angels protecting Your daughters as they both sleep. Thank You for being merciful. Thank You that we can feel crappy and still know that You are there. I pray peace for Krista and her family, and healing for sweet Annabelle. Amen.
Krista, I'm happy to hear that you will be treating yourself to some well deserved rest in your own bed. Will pray you sleep well and not worry.
Take care of you, God is in control!
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