April 4, 2003
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the case of the missing person
I'm back. And yep I disappeared again.
My one night stay in the hospital with Rainee turned into three. She has central Apnea and stops breathing for upwards of 30 seconds MULTIPLE times a night. Guess that explains the desaturations.
She also has several other new diagnosis. Her lung disease being changed to Obstructional Lung Disease. (Like that official sounding term?) It means she doesn't push all the carbon dioxide out of her lungs.
She also has mild hypertonia. And mild gross motor skill delays, and UMM, lets see there were at least two more. Thinking, Oh yeah, ummm several congenital anomalies. Hows that for nice and specific. BWAHAHAHA
Because of her 4 main problems. The PDA, the bronchial malacia, the trachea stenosis, and the central apnea. OOPS that would be 5 main problems. And the GERD OOPS sorry 6, the Obstructional lung disease. Okay did I miss any of the "main" ones. I think I got them all. Anyhoo because of all of these seemingly unrelated but quite serious problems they did some serious evaluation of her developoment, and genetics. And are trying to come up with a syndrome or something that fits all of the seemingly unrelated problems.
Blood work and more results to be in some time.
She did a anesthesized MRI. Showed nothing. X-rays of lungs, and hips, and spine. (because of her not standing on her own yet) Showed nothing.
Basically they have no idea why she stops breathing. We're sure to be capping out our insurance any second now.
She came home with oxygen and a apnea monitor to add to the pulse ox. She will be on a liter of oxygen every night. And this obnoxious alarm thing will go off if she stops breathing for longer then 25 seconds. And there are still more tests coming.
I obviously am overwhelmed, and sleep deprived due to three nights in three different hospital rooms (same hospital) And so on & so forth.
I'm sorry for leaving people hanging on the story boards. My sister is coming over tomorrow so I can sleep. And maybe after that I will catch up. Can somebody who reads this explain to those at the HOE, Castle, etc where I went. TIA.
I sure wish I had a lap-top I could have used it waiting for test results.
Maybe I'll get rich. BWAHA
I have at least one more overnight hospital stay coming up in the near future for another 24 hour evaulation.
And well life is a pain in the but, and I'm near hysteria.
God is in control? I'm trying hard to believe that.
Comments (10)
Wow, Tonia. I'm so sorry for sweet little Rainee. It sounds like you are getting good care for her. I pray she will respond well to treatment and you can get some answers.
Two of my children had to use apnea monitors. They are extra work, but so reassuring.
tonia my heart is breaking for you. i'm praying for you.
Oh Tonia, what a nightmare. That poor wee girl, and you and Rob and the family. My heart aches for your worrying and waiting.
My thoughts are with you all.
I was missing you and logged on to email you! Glad you reported in. Take care and hugs, TP
big hugs and lots of prayers to you and your family!!
**hugs** young lady, glad you are back home!!
Tonia, I'm curious to know what they come up with that they think is causing all this, if it is a single diagnosis. Her lung diagnosis sounds alot like what I have (if chronic obstruciove pulmonary disesase is the same thing or not...not sure) and I already mentioned having the PDA also...but they knew all mine were related to being born premature and/or the the treatments related to that very early on. The lung one in particular is scared tissue (and therefore basically useless) that does show up on an x-ray. And like Rainee my stats for exhaling are different than inhaling (not sure exactly how though. lol Been too long since I did a test to see the numbers--I do have an appt. next friday though.
Explaining to a lung dr. why you're making an appt. because you are pregnant is rather interesting to say the least. lol)
And she could be delayed just because her body is concentrating on other things.
I didn't walk until almost 2 either but I'm guessing it was due to the fact that I was sick more than not with less opportunity to work on those things.
Anyway, just wanted you to know that eventhough right now things are tough, they will get better and I'm sure her long term health will be quite managable.
Take care and rest up while you can.
Oo! Glad to hear you're home and okay. Rainee's in our prayers.
*hugs*
{{HUGS}} and prayers
My mum has sleep apnea...
*hugs* Hoping and praying you feel God's peace right now.
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