I am thrilled to be giving a PRAISE report about Peyton tonight!!!
It was decided when Peyton was in the hospital back in November, that she really needed to go on bi-pap for her sleep apnea. In case you don't know, Peyton has severe central sleep apnea, as opposed to obstructive apnea. Unlike obstructive sleep apnea where there's an enlargement or other sort of blockage of the airway causing the apnea, central sleep apnea is where the brain is simply not doing its job in telling her to breathe! Since she was a baby, Peyton has had to use oxygen at home. She gets it via a nasal canula. This just provides a constant stream of oxygen to her while asleep, but if she's stopping breathing during sleep, she's stopping. Without the oxygen, her oxygen saturation levels drop into the 70% area while she's sleeping. Sometimes lower. They need to be up over 95%. Over time, sleep apnea can cause damage to the heart. We've already discovered since November that she has a mitral valve prolapse and a heart murmur. The doctors decided we really needed to try to get her on bi-pap to help her rest more comfortably and hopefully ease some of the strain on her heart.
On November 14th, Peyton was discharged from the hospital with a brand new bi-pap machine. You can read more about bi-pap here:
C-pap is continuous pressure. Bi-pap is two pressure settings - one for inhaling, one for exhaling. Essentially, if she's not breathing, it can force air into her lungs. Further, b-pap is considered a form of non-invasive ventilation. So, for Peyton, this is kind of a last resort before moving to having to put her on a permanent ventilator - and that is something that we are strongly opposed to.
So, when she was in the hospital, someone from the medical supply company delivered this shiny new machine to us at the hospital and went through the long process of explaining how to use it, as well as fitting Peyton for the mask she'd have to wear. I've previously written about how having to do the cough assist treatment on her is like absolute torture. With the exception of the rates of the pressure used, having the bi-pap mask on her was no different. Torture. It was horrible having her fitted for it. We felt so defeated. We knew this was something she needed, but just felt like there was absolutely NO WAY that she would EVER tolerate the mask on her face, much less actually be able to hook the machine up to it and use it! Even the man who delivered us told us that he's NEVER had a 4 year old patient tolerate the mask before. NEVER. Great.
The machine has sat in its case since November, barely seeing the light of day (or night as is intended!). Any time I tried the mask on her, it was torture. However, our extremely diligent nurse, Emily, has worked with Peyton every day that she is here with her just trying the mask on and hoping that one day she'd tolerate it. We even switched up Emily's shift from a morning to late afternoon shift to a noon til 10pm shift so that she could work with her around nap time and again towards bed time. The hope was that someday Peyton would tolerate it and we could hook up the bi-pap machine and actually USE it!
In the past week, she put Peyton through bi-pap torture as usual. At times it seemed Peyton wasn't actually seeming to be as fussy. That was pretty amazing. Now, she still didn't like it, but things were looking up. A few days ago, during her early afternoon nap, Peyton actually fell asleep with the mask on! IT wasn't hooked up to any tubing or to the machine, but she was asleep with the mask on! It didn't last her whole nap time, but it was another positive step.
What I am excited to report tonight is this. As I sit here typing, Emily is in Peyton's room with her monitoring her, not only WITH the bi-pap mask ON, but with it HOOKED UP AND RUNNING!!!! This is a HUGE triumph!! They said it couldn't be done!!
Praise God for this miracle!! Now, it's 9:21pm and I don't know how long Peyton will sleep. If it's a 'normal' night, she'll sleep til 7:00 or so in the morning. Wouldn't it be amazing if she did so this night?? THIS is a miracle. Emily just came out and is smiling because she can just see that it's helping - her oxygen has been constant at 98% and her heart rate is nice and low. Just on oxygen, the numbers hover around a bit and the oxygen will dip and rise. Not so right now!!
You know, Ron and I are in the midst of a 21-day fast. It's to take sometime out to connect with God on a deeper level. It's approaching the end of day 10, and I have to be honest, it's been difficult. I can handle the food part of the fast, but it seems like at the time when I'm trying to make myself more open to hearing God, I'm finding a whole lot of distractions are turning up in my life. I know that that is just the enemy trying to prevent me from seeking God, but it just makes it so much harder.
I won't go into everything that this fast means for me, but the one thing that I have been praying constantly for is for God to heal her lungs; to help her respiratory issues. This may not be a 'healing' per se, but she needs to get on bi-pap to help her little lungs, not to mention her heart!
During this time of fasting, one scripture verse has been repeating in my head - and it takes on new meaning for me tonight:
"The effective, fervent prayer of a righteous man avails much." James 5:16 (New King James Version)