Update on Maggie Grace

For those of you who faithfully follow my blog, I wanted to give you an update on my little niece Maggie Grace. This is written by her mother on their Caring Bridge page. It is fairly lengthy, but I still wanted to share because we serve such an awesome God! He is sooo VERY VERY Good!!!
Christi

Friday, February 26, 2010 11:04 AM, EST
I'm just getting to a computer now, so here's what's happened in the past 36 hours:Maggie came off the vent around 10 pm the night of surgery (Wednesday night). Watching her wake up and fight the vent was the hardest thing I've ever seen until I saw her cry with tears and no sound because the vent tube kept her from vocalizing. All I could say was "I hear you, baby. Mommy hears you." watching her look at me with the very look in her eyes that I was so afraid to see. The look that says "but I trust you, Mommy, why is this happening. Please make it better, now!". It turns my stomach to remember. Once the vent was out she was able to cry and say a few words. I think the 12th word she said was "please". That's our Maggie! She had a really good night, slept quite a bit- I think I got about 5 hours of sleep myself, and 45 minutes of that was curled up in her crib with her (siderails all up and around both of us!) because she woke up at 4:30 am saying "Hold Mommy."- I would have moved heaven and earth to hold her when she asked, and the nurse told me to climb on in there with her, so in I went! We slept together for 45 minutes before she woke up again. So, by morning- everyone was calling Maggie a rock star for having done so well.Then, after change of shift and rounds, Maggie got agitated and uncomfortable, and had an episode that looked to me like a seizure. The staff all ran in, but it passed quickly. She was herself again, but it happened again 15 minutes later- this time it was a little longer, and looked much more seizure-like. The doctors were all in the room- about 10-12 people standing there, talking to each other, making decisions....and they decided that they didn't think it was seizure activity, but could be reflux. I held back laughter and stuck with a incredulity and said to this large group of experts- "I hear you, and I trust you because I know that you are the best of the best, and I will go along with your treatment plan because I trust you, but I don't believe you for a second." Don't know where that came from- my mother's heart, I guess- that lioness protective instinct...but I found out later that one of the doctors in that group was the attending physician who just so happens to be the world's leading expert in pediatric pulmonary hypertension. Oops. Funny thing, I'd say it again if it happened again! Ok, all that to say, she had 2 more spells later in the day, but I made sure to avert the "seizure like" activity by making sure she was bagged with oxygen to support her breathing which stops the breath-holding. So, needless to say, although I did leave to get lunch and dinner- I didn't stray far from the hospital yesterday!The neurologists saw Maggie yesterday and today, and everyone feels like these spells were just a rare version of a prolonged breathholding spell that can happen under circumstances like the ones Maggie is in now (pain, strange environment, frustration, etc). They expect that she will continue to have breathholding spells over the next year or two, but they should be less scary than the ones from yesterday. And, they are unrelated to her heart. It's important to Jason that everyone understands that these are involuntary- it's like Maggie can't breathe in- not that she's being stubborn and won't. But, the doctors say that is normal, too.Ok, so that brief setback aside....that meant we spent an extra day in the ICU, but she had a fabulous night- she slept almost all night. She got up to play around 3 am, but she went back to sleep and we woke up at 7 am!!! I slept a ton and feel so much better today. The only tubes she has left are 2 IV's and her EKG leads, plus her oxygen saturation monitor which feels like a bandaid, but it glows red and she hates it (it's what set off yesterday morning's first spell, combined with pain and the stress of so many people in the room after change of shift, I think). Exactly 1 day after she came out of surgery, she was flirting and smiling at the Neurology fellow who came to evaluate her. Her first smiles- they were so amazing to see. By last evening, she was crawling all around in her crib, standing up on her own, and sleeping on her tummy. I took her for a walk (I carried her) around the ICU last night and she picked out a toy from their treasure chest. This morning she's supposed to be napping while Jason stays with her. She's eating and drinking well and we should transfer to the cardiac floor today sometime. Speaking of which, I need to get ready to head back there. There's so much more- clinical stuff that's so interesting, but no time to tell that story today. So, keep praying and praising God.I have to say that I am amazed at the strength that I feel through all of this, even when I've been so tired that I thought I couldn't stand up- God has lifted me up, carried me, and allowed me to be Maggie's comfort. It is His strength and peace that has made this so much more bearable, and so much better than I could ever have anticipated. His strength is perfect. And, I know what 'peace like a river' means....we have it. It's full and smooth and deep. Thank you. Your love and support is so encouraging.
Sara (& Jason) VanHeukelum Pin It Now!