It's been nearly a year since I've posted, and my what changes to Blogger since last I logged on! It's so much less complicated than it was at one time. Maybe it will help me be motivated to keep up a little bit more?
On Memorial Day weekend, Madeline had a sleep study at St. Vincent's in Indy. Since she came off her oxygen last summer, we wanted to make sure that we hadn't jumped the gun. Her surgery to correct her kyphosis (severe scoliosis; hers was in her lower back) showed immediate change in her lung space, and even before we left the hospital, the Little Miss was hanging out at 98-100% oxygen saturation sans O2 support, compared to 88% or so pre-op.
I wondered how difficult a night it would be now that Madeline is almost 4. Yes, she can talk now (in paragraphs!), but I thought it might bother her more to be messed with.
But she handled it like an angel! She continually felt where the RT was placing the leads and tape and the wrap, but she chatted up a storm and played with the RT's name tag. (By the way, dear medical friends of mine, when you are in med school of any kind, do they have a special class on offering children name tags to play with and talking about the name tag and the picture and the pins on it? Goodness, the DOCTORS even generously unclip their badges and hand them over when she simply says, "What's that?")
The night went well. When I said it was time to lie down and sleep, she said, "Okay!" and promptly laid down and was asleep within minutes. I slept soundly until just before the RT came in to wake us to leave at 5:45.
The clean-up process takes awhile. There are so many wires and so much tape and so much gunky stuff (love my technical term?), and Maddy looked a little dazed, like she was wondering why on earth she only had 6 hours of sleep instead of 13. During the clean-up, the RT said she wouldn't be surprised if Maddy would go back to some oxygen at night.
{{Madeline during the last of the hook-up process}}
A few days later, we did indeed get a call from the nurse stating that Madeline exhibited mild obstructive and central apnea. They double-booked us for an appointment a week off, and asked us to make an appointment with neurosurgery (which is yet to come).
Last week, we saw Dr. Akanli, Madeline's pulmonologist and one of our favorite doctors. The little lady is a wealth of knowledge and she thinks outside the box, which I appreciate since Madeline's other factors have to be taken into consideration with any of her breathing issues. She easily includes me in the decision-making process.
Bad news first, right? (Daddy always asked, "Do you want the good news first or the bad news?" To which I always replied, "Bad. Save the best for last!") Madeline is having quite a few central apneas at night, lasting 15 seconds or so. She is having an average of 40+ brain awakenings per hour (which could contribute to her need for 13 hours of sleep at night). This means her brain wakes, even if she isn't fully awake. She has a base O2 saturation of 95, but frequent dips to 70s (140 or so during the night).
Good news. There is NO obstructive apnea as originally reported. That means that despite this bump in the road, her
kyphectomy last year really did help her a LOT. On her previous sleep study her base was 88-92, and she'd dip to the 50s, almost all of it obstructive. We are beyond thrilled with the progress.
The plan: We will see the neurosurgeon in July to check up on Madeline's shunt and Chiari malformation, which is the brainstem being pulled down because of the
myelomeningocele at birth (the spinal cord and spinal membranes in a sac on the back. If you visit the link, the picture of her sac is halfway down the post). There may be a shunt working intermittently (although we're not really seeing signs of this, as we did before her only
revision), or the brainstem may be too compressed (for the life of me, I don't remember the signs from
the last go-'round). Either would probably require surgery. Or it just be a neurological issue.
Dr. Akanli doesn't feel that O2 is necessary but that C-PAP would give her the support she needs. That in itself is good news. We're willing to do whatever it takes, obviously, but I'm not going to begrudge C-PAP when we've had to deal with huge oxygen tanks in the garage and a squealing and heavy portable tank weighing us down, let alone 75 feet of tubing winding through the house for us to trip over or sweep around. :)
Thanks for sticking with this post! I'm so happy to actually be posting again that I forgot and gave you every little detail! Thank you for your continued prayers for our little Maddy. She has had such a great year+ since her surgery last March. Besides getting her back straightened and getting off oxygen, she also got her first wheelchair, started preschool, and began talking (as I said...in paragraphs!!!). She is a totally different kid than a year ago, and we're so grateful. Miss Maddy brightens our lives and that of everyone she meets. It's so fun to watch her go wheeling half way across the commons area at church to give someone a hug, and countless people get down on their knees in front of her to chat with her and give her kisses. We see, and you give us joy too.
