Back to the Hospital

Nic is on his way to Oakland Children's Hospital with Cayleigh to see if, perhaps, her increased desats are due to obstrutive apnea. What's obstructive apnea? Well, its basically when something is blocking her airway. Previously, 'they'd' said that she had brain damage that caused this apnea/desat. Her Pediatrician, Dr Weger (who is amaing),mentioned at our last appt that she clearly saw Cayleigh's chest wall rising during her desat which means this isn't a BRAIN problem, it's an OBSTRUCTIVE problem.

This brings me back to when I had Cayleigh and was sitting on the toilet at St Josephs, heavily medicated, and was looking on the computer to try to find out something -anything. I purposely never looked up the "Trisomy 18" that they'd misdiagnosed her with. Instead, that night I came across a blog post that came from a woman who's child had no gag/suck/swallow/cry. Ended up that she had a floppy airway. It mentioned a swallow study to see if this was the case. When I brought that up to the medical team there I was brushed under the carpet. What's peculiar, however, is that when I looked through my computer history to try and find that blog again to show Nic - I wasn't able to find it. Like...it wasn't ever even there.

So, now it's coming full circle. For those of you who know me, I've never been the best person - I've had my share of valleys and mountains... but since Cayleigh's birth I've drawn very near to God. If nothing else - I can above all things, and without a doubt, say that God works in mysterious ways. That His timing is not our timing, His ways are not our own. But you know what? He Delivers! (Literally) - I don't care who you are .... you CAN'T sweep God under the rug.

I woke up this morning with a bit of a stomach twist, a high fever (almost 102) and a headache. I stayed up for as long as I could and took care of making calls that needed to be taken care of. One of those calls was to Dr Weger - in which I spoke candidly about how I don't think Cayleigh has a secretion problem ---- but if there is anything causing the gagging it's because this RObinul medicine has caused her secretions to be too thick & I told her that I whole heartedly believe this is something different causing these problems. Cayleigh DOES make noise. A pulmonary doctor we saw once said that her tongue blocked her airway causing a noise called Stryders. It's a high pitched little squeak. Well, I had my finger in her mouth, and she was sucking on it, her tongue was down - and she made that very same noise.
I'm not saying that doctors don't give their very best opinion. What I am saying is that Cayleighs doctor - the Great Physician - has this handled.

As much as I want to be there, I can't because that would be selfish of me & ultimately nothing would be gained. So I sit here, blog to you all and try to keep composure. May God's good and perfect will be done.

From what we know: They'll do a sleep study, laryngoscopy and hopefully we'll figure out the REAL reason she desats. My being sick comes at a most inopprotune time but thankfully I have my rock, My husband, to see things through. It's sad that Nic's leaving here in two days for a 3 week job, but it's also a good thing because we'll be moving into our new house when he gets back. As far as Cayleigh is concerned - they've promised us that they won't poke & prod Cayleigh. We're big on her NOT getting IV after IV. I wish I were with them.. *sigh* Please keep her in your prayers and thoughts. Thanks for listening