Things have finally settled out a bit, so thought I’d do a slightly longer recap.
From yesterday’s post, Annabelle had a not-stellar day yesterday, and I was a wee bit worried. But I put her to sleep last night, and her SATs came right back up. I left the O2 monitor on her for a few hours, but about 1, I turned it off because when she would kick, it would stop picking up well and beep REALLY loud.
I got up with her a few times after that with her tossing and turning.
About 5 a.m., she started to fuss pretty bad, but she fell back asleep. At 5:30, she started crying really bad, so I got up, vented her Gtube in case she had gas pains, gave her morning meds, and picked her up and went and rocked her.
That lasted about 1 minute. She just looked weird to me, her cry was now to the point of terror, and I couldn’t console her at all. I put her on the O2 monitor, and her SAt’s were 40!
We debated for a few minutes just putting her in the car and driving up here to Vanderbilt, and I tried to up her oxygen to get her stabilized, but it was still staying high 40’s. She started gasping for breath and her eyes were glazed over and it was just REALLY horrible to see. We called 911, ambulance came, and we started the trip to Nashville. After a few minutes though, they changed their minds and decided to go to the nearest hospital (still 15 minutes away) and life flight her to Vandy because her heart rate was dipping and they had to do CPR a few times to get it back up.
When we met the helicopter, they intubated her in the ambulance and I flew with her to Vandy Children’s.
Since we got here, she’s been stable. She still has dropped her SATs some though, so we aren’t weaning the vent at this time.
We have no clear idea what is wrong and why she had this issue.
It took a long time to get access in her (for blood draws and IV meds), they finally did a central line (took an hour and a half!) and got labs early afternoon.
But for the most part, all of her labs were fine. Her electrolytes were all normal. Her initial blood gas when we got here was awful, but a repeat one this afternoon was normal.
Her BNP was WAY high though… 2200. We are unsure if this is because of the extra fluid she has on board, from the CPR and subsequent trauma her heart went through, or if this is a sign of true heart failure. A repeat one later, and look at a “trend” will help us better guage this.
Her chest Xray was VERY wet, so that is not good either.
Her other issue is her belly. It was VERY distended when we got here, and we did a belly xray and a CT scan of her belly, and it shows a LOT of air in her intestines. This, however, just needs to come out through “normal” means.
There is a little concern that she has some air in a place where it is NOT normal to be, so general surgery is going to come and consult just to get another set of eyes and opinion on that.
But in all, there is no clear reason for her issues this morning. A lot of signs and symptoms, but it is hard to know what is a RESULT of this morning and what is a CAUSE of this morning’s issue.
Oh, and we still have viral panels out and some other tests that will test for a virus to see if she just had a bug. To that I say…. Um… PLEASE tell me we won’t have to do CPR every time she gets a little bug!
In the back of all of our minds is still the “rejection” word, but her echo didn’t look “bad” so we aren’t jumping on that just yet, but keeping a close eye out.
We are… tired. Frustrated. Feeling a little defeated. Sad. Overwhelmed. But thankful to be in a place where they can care for her. Being home with her so sick was the scariest thing I’ve ever experienced!
It is SO frustrating to not know what is wrong and how to fix it. I think that is the worst today. She’d been doing so well…. although I’m still cogniscent of the fact that we were in the hospital a day last week for fluid issues…. I just am afraid we are “missing” something in all of this. I don’t know.
God DOES know though, and as we have this whole past year, we place our Annabelle in his capable hands. It’s been one scary, crazy day though.
Your continued prayers for Annabelle, the doctors, and our family are so very appreciated!
Will update when we know more.
Oh, and THANK YOU THANK YOU for all your support today. Your comments/tweets/messages have really helped me today. It is so comforting to know so many people are praying, and reading them gets my mind off scary things. So… thank you!
I can't imagine how scary. Praying for you all ~ Lis
Praying for you. My heart goes out to you and your family.
Praying for you Cheri. God will guide your way, no matter how tedious or disturbing. With love.
Annabelle is such a brave little girl. She was in my thoughts first thing this morning when I woke up & I've been praying for her (and you!) ever since. xx
Praying for Annabelle. One day at a time Krista – that's all you have to handle is just today. Tomorrow will be here soon enough.
What a scary day! Thank God for life flights and capable people to do whatever needed to be done.
And thank God for His capable hands to hold her and keep her safe. And you too 🙂
You and Anabelle have been in my thoughts all day. I'm praying!!
Praying for dear Annabelle, you, Dad and the doctors. Through your tweets and blog I feel like you are family.
God has his arms around you all !
Lord, please be with Annabelle and her family right now. Especially her mama…Lift her up on your big Daddy back and carry her through this new test. God, the scariest thing is just not knowing, but I pray you would give Krista supernatural peace in this very moment. And fill the doctors with wisdom to get to the bottom of these questions. We thank you for the promises in your Word. May they strengthen and comfort those who need them tonight. Amen.
My heart aches for the very difficult and scary day. I'm praying for your little sweetie and for the doctors. And for you
My family just gathered and held a major prayer session for Annabelle.
We will keep the prayers coming!
I ache to think of what you and your hubby went through as you made the decisions and watched all that took place. I'm thankful Annabelle has such a competent medical team and continue to pray for them, your precious little one, you, and your family.
Oh Krista, my heart goes out to you all. Of course I'll be praying for you all.
Hugs and blessings,
I've been thinking about your family non stop since I read about Annabelle coding on Jill's blog. I'm glad to see your update and am praying for all the unknowns that still exist.
Lord, place your Healing Hands on Annabelle.
Going to our Heavenly Father to beg for Annabelle's complete healing. Keep us posted on what we can pray for specifically.
Oh Annabelle, sweet, sweet Annabelle, I pray that the doctors figure out quickly what is going on with you and making you feel so sick. I will keep praying for you and your Mommy, Daddy, and big sisters.
Continuing to pray for you all. Be blessed with peace and rest in the name of Jesus.
Dear, sweet Jesus,
Please be with Annabelle and Cheri and the whole family as they work through this latest development with the precious cherub You've graced us all with. Guide the doctors and nurses. Breathe Your peace into the hearts of Annabelle's family and her caregivers, even as you breathe the breath of life into Annabelle. In Jesus name I pray,
We thank You for your continuing – your eternal – goodness. We continue to ask You to give Annabelle good health. We are persistent, and we are shamelessly bold – because You taught us to pray this way (Luke 11). Give the doctors wisdom and skill.
We also ask that You continue to comfort and surround Scott and Krista. We thank You for giving "good gifts" to Your children.
In Jesus' wonderful name,
Will continue praying for all of you. I cannot imagine how scary this must be for you all. Take comfort in the knowledge that you have a host of angels surrounding you all. On a side note, how is your foot?
Lifting sweet Annabelle up in prayers, as well as you guys and the doctors. Praying that they figure out what is going with Annabelle. Praying.
I can't imagine how scared you were today. You are still in my thoughts and prayers all the time.
Krista- Reading that brought back so many flashbacks for me. Holding Joshua when he coded multiple times. It is the scariest thing to watch and feel so completely helpless.
Shane and I have been praying for you guys all day. We will continue to pray until things get figured out.
Know that you are loved and that Annabelle is surrounded with love and prayer.
praying for you!!!
Hopefully you can find the underlying issues soon, have they done a cath recently? A fellow heart friend at Seattle Children's had relatively similar issues, and they went in on a cath, and found an extra vein, banded it and he was out of the CICU in about a day.
I'm not a doctor of course, but my instinct as a parent in the face of unexplained issues like you're having with Annabelle is to push for more tests. Sometimes it's a fight just to get a BNP level, and a cath isn't easy to get… but if they don't see anything else and things aren't getting better… At the same time though, don't assume that a test will give you the answers that you need, as it's just as likely that they will leave you with more questions than they answer.
Stay strong, we will be praying for Annabelle and against rejection, and that they can find and treat what the issue is quickly. It's hard going back to the hospital over and over, but there's no better place to be right now.
I feel like I'm riding this roller coaster with you emotionally. My heart just dropped when I read your post. Definitely praying for Annabelle and for you!
Wow. So many ups and downs for poor Annabelle! Praying for answers and hoping for the best! I've been following your story since Annabelle's transplant and can't believe how much you have been through. Yes, I live on the other side of the world and I'm only 15 but reading about your journey has had a huge impact on my life.
I am the mom of a 4-month-old boy with Hypoplastic Left Heart Syndrome, and I just want you to know that I'm thinking of you and your beautiful little girl. We, too, have been through some complications that led to our Sam getting his Glenn early (he got a central line infection and had a subsequent stroke), and if you find any comfort reading the blogs of other moms of HLHS babies, our site is http://www.ourlittlewolfie.blogspot.com. You sound like a strong mom, and I'm sure you're Annabelle is a fighter, too.
Praying for Annabelle, the doctors wisdom and your entire family Krista! Hugs from Colorado ~xoxo~
As always – praying, praying, praying and hugging you, if not physically, then in spirit! May Jesus' presence be real!….Julie Zaragoza
I am praying hard…She is such a sweet baby, and a FIGHTER!! Love you!
Just found your blog through Jill's. I wanted to offer my prayers for your family and your precious baby girl!
Stef (Heart Mom to Logan)
Thinking of you all and praying for Annabelle and you all as well. Deb Young
You are all in my praYERS TODAY.
I know it must be hard on you.
I watched my daughter dying for about ten hours. Sometimes we have
to give it all to God and hope for the best.
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