I was so excited to post our news yesterday.
I’m equally as disappointed to report that we are back in the ICU as of about 2 hours or so ago.
I got back from work (which I hated to go to today anyway given my nervous of her being more “alone”) and she just didn’t look good to me. She was sating in her low 70’s and dinging into her high 60’s occassionally. (most people have O2 SATs of >95… hypoplast babies with a pre-fontan heart sat 75-85… 60’s are way too low) Anyway, I asked the nurse how Annabelle’s went, and she said it was great, that she’d desatted just a little so they put a roll under her neck to help her get good air while she slept.
Well, the sleepiness was part of my worry. I started to eat dinner, and her alarm started to ding more. I tried to sit her up and she didn’t wake up even a little. Her eyes just rolled back in her head and her limbs were floppy. I went and got the charge nurse, and then the regular nurse came in too and we tried to suction her out a little. I kept telling them that she was way too sleepy and this wasn’t normal at all, so we got a doctor in there and they did a blood gas.
Blood gas was very bad. PH was 7.09 which is way too low and her CO2’s were 94 which is way too high.
They called stat and the PICU people ran upstairs.
I know it’s dumb, but I had this HUGE sense of relief this time when people ran into the room. Usually I would be scared out of my mind, but these people are the ones who have been caring for Annabelle for almost five months. They are familiar to me, they know Annabelle better than anyone except maybe me and definately God, and I trust them.
Not that the 6th floor people aren’t good too… I’m sure they are. I just don’t know them yet.
So, they bagged her, brought her back down to the PICU, and the wonderful nurses on the 6th floor helped me pack up my rediculous amount of stuff and bring it back down here. They were all so sweet and helpful.
Annabelle went back on CPAP and we took another blood gas just about 5 minutes after, and it was much better, but still not great. Going to take another one in a bit.
We aren’t sure where this leaves us yet. Talked to the surgeon’s nurse and she said we’d talk about it in rounds tomorrow, about a “plan” for next steps. The question now is: do we try a 2nd time for the floor and home once she’s off CPAP/vapotherm again… or do we say that we aren’t getting better due to her heart and try for the Glenn surgery.
I have a feeling they will want to give her one more shot to make it until Spring, but I’ll know better tomorrow.
Tonight, to be honest, I’m a little numb. Part of me wants to laugh because it is just another page in Annabelle’s very eventful life so far. Except for the fact that we were on the floor this time… we’ve been here and done all this many many times before. Part of me wants to cry because I feel the hope of being home for Christmas sliding through my fingertips. I feel disappointed at this yucky step backward when we had made such a huge leap forward. Part of me wants to yell and scream that this is so totally not fair and that we should not have to go through this.
And another big part of me just wants to fall on my knees and beg God to please please please have mercy and make this all better and remind him of how I can NOT handle anymore of this.
And yet another part of me knows that the “right” thing to do is to give it all to God and surrender to whatever he has planned and say, “I will serve you and glorify you God, even now. No matter what.”
I’m so glad God understands the stages of “handling” things… and I’ll get to the final stage. I’m mostly there already, just… yeah. It’s just very disappointing.
God is still good. Even now.
Krista, I'm so sorry. I know you were so excited to be going to a "regular" room. But I'm so glad God has surrounded you with professionals you can trust. You guys are in my prayers.
Thank you for your transparency. You are ministering to me.
Cling to Him. Shake your fist if you need to. He won't be threatened or turn away.
Krista, you amaze me. We may know that God doesn't give us more than we can handle, but that doesn't make it easy. You are a constant testament to the power of faith.
I'll add extra prayers for you and Annabelle tonight.
My daughter and I have been praying for Annabelle. I'm glad you trust the Lord and those doctor's, I'm sure it helps take some of the edge off. Hang tuff Krista, the Lord will see you through this. This to shall pass. The Lord has a plan. Jeramiah 29:11
Annabelle just missed her PICU peeps, and Little Miss Feisty knew just what it would take to get her back there. 😉 At least you can tell them I said that.
I love you, KP, and I know you're hanging on by a thread right now. It's gonna be okay. HUGS. HUGS. HUGS!!!
Valerie, funny, we HAVE been saying that. I told the nurses/doctors that Annabelle just missed them. WE've decided that a PICU nurse just needs to come and visit her once a day so she doesn't pull tricks like this again.
Next blood gas was even better, not quite perfect but pretty darn close. WE are switching over to vapotherm tonight per mom's request as Annabelle HATES the CPAP machine and I think will do just fine back on vapotherm. Still waiting for a plan in the morning…
Krista, I am so sorry to hear this! I can totally relate – during Bodie's long hospital stay, he was released from the CTICU up to the 6th floor (our step down is also on the 6th floor!) and 30 hours later, rushed back to the CTICU in critical condition, intubated, horrible cbg's, yadda yadda yadda. It sucked. It turned out to be MRSA in his blood and once they treated it, he did much better, but it was so scary when it happened. It was just defeating to make such a big step forward only to get kicked back down. I'm so sorry. Will be praying this is short-lived and they figure out what's wrong.
Krista, my heart aches to hear of the setback, but I rejoice in the fact that Annabelle is in the care of a medical team you trust, one who knows her and with whom your little darling feels comfortable. May the Lord cradle all of you in his strong arms as you await the news from the doctors tomorrow regarding The Plan.
Praying she had a great night, Krista, and that God will fill your family with joy and peace this Christmas, no matter where you celebrate it.
Krista, I'm praying for you. She is such a precious little girl, and she's blessed to have such a loving mama.
You have the right attitude Krista, continue to trust that this WILL be used for His glory, in one way or another.
So are you back in ICU for good or just temporary?
Hang in there Krista! We're praying for you!
When I was going thru a very trying time my Dad use to say something to me that I find very fitting for your situation with Ms. Annabelle-
Setbacks pave the way for great comebacks!
God will you see you through this and back upstairs in no time at all!
Krista, I am so sorry. They say that all babies have setbacks, but it seems like Annabelle has had more than her fair share. Sometimes all we can do is rely on God to help us put one foot in front of the other.
Several years ago I made a framed print with the chorus to the song "Blessed be the Name of The Lord," having no idea we would actually have to live the words we loved to sing. You are living out so many of the sayings and songs we throw out so often. I hope those words are bringing you comfort, and I also hope you are encouraged by knowing so many prayers are being said for your sweet girl.
Krista – your faith amazes me. You are such an inspiration! I am praying for you and sweet Annabelle. HUGS to you and if I can do anything whatsoever, please let me know. Love ya!
Krista, you have such a gift for writing and expressing and sharing! Thank you for sharing your story and your feelings during such a trying time in your life. You are truly an inspiration to me. I will continue to pray for you and your entire family! May you always feel all the love and prayers that are sent your way!
Oh, Krista, my heart aches for you. We were so excited yesterday when we read Annabelle was on "the floor". I can't imagine how this all must effect you. I know the feelings I've had to deal with when Daniel was hospitalized but his longest hospitalization was 9 1/2 weeks. I can not imagine how it must effect you when Annabelle has been in there as long as she has.
In all this though, it seems like you are trying to keep the right perspective. Keep giving it to God. He desires for you to come to Him with it. The passage Philippians 4:5-8 has really helped me when I've struggled.
Thanks for sharing something I know can be difficult to share. Hang in there and know there are many praying for you. My boys and I have been praying for you and Annabelle and will continue.
Lots of prayers and Heart hugs ….
Hi Krista –
Don't give up. There's still two weeks until Christmas. We're praying for you.
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