Friday, September 09, 2011

Busy, busy, busy week - with a surprise ending

From Zuperfliegen
Zupe had his 3 month sleep study on Monday. We managed to arrive on-time and much to my surprise were free to wander about (= get supper) until 6:30. They were very surprised when I responded to their "bedtime" question with 8 PM. (What would they have said to last night's almost 10 PM turn-in? In our defense, he did have a long and late nap (3+ hours waking after 5 PM) AND we were partying. Partying - that's always an acceptable excuse for a late night, right? There isn't a minimum age for that, is there? I can't see anything that contradicts that in my little yellow baby's first year in Qld book.)

Monday was the sleep study. I tried to get him to bed earlier - but I think it was likely closer to 8:30 before he both drifted off and I could thump him into bed without him waking and staying awake. (It took 2 tries.) He slept well - until the nurse woke him (and me) at 3 AM because he had wet himself and his bed and he was cold and restless. By the time we had him and his bed changed, he was WIDE AWAKE. It took 45 minutes or so of hand watching then nursing then hand watching then... until he was once again sleeping. I spent the rest of the night jumping from dream to dream to dream - mostly about getting results of the sleep study - sometimes good, sometimes bad. Each dream I'd think this is just a dream and then I'd "wake up" to the real result appointment and ...

Tuesday we saw a physical therapist who believes he is delayed a few weeks (4 to 6 is my estimation) that is consistent with the time he spent in the hospital - not eating well, not waking well, and having a limited stimulus environment. She doesn't think he needs therapy only MORE TUMMY TIME. (This will not please the boy.)

Wednesday - after a little "fender-bender" (oh joy) - we saw the chiropractor who noted tightness in the left neck and right hip as well as subluxation in the left occipital bone and left sphenoid. He thought these could affect breathing and made adjustments with his handy, spring-loaded adjuster instrument. Zupe was asleep until the thumping started. He woke, seemed momentarily disturbed, then relaxed and enjoyed the massage. I'm assigned to massage his neck and hips, practice moving his arms and legs - particularly opposing limbs together, and hanging him upside down to allow his spine to stretch out. (We haven't done the latter. That has to be supremely well timed. Too soon after eating and you create a "waterfall". Too far after a feeding and he is likely to become SAD. It was a good experience. I felt positive about having something I could do that might be helpful.

Thursday was the real appointment to get the results of the sleep test. We met with a doctor we had never encountered before who told us the sleep study was PERFECT. The number of apneic episodes was within the normal range for a baby of his age. He was normally saturated both on and off oxygen. Our secret hope was that Zupe would be reduced to only night-time oxygen - but we were discharged. NO MORE OXYGEN!!! Not in the morning, not in the evening, not at night!! I was told to wait for 1 month before returning our oxygen canisters in case we encountered a problem. (That is a bit nerve wracking - waiting to be sure he doesn't crash and burn.)

After, Zupe and I met with a new pediatrician who was fabulous. He spent over an hour discussing my concerns and his: why the oxygen? eczema, developmental delay, plagiocephaly (or my baby has a flat spot on his head), feeding solids... What a difference from ped-one. Wow. Why did I delay?

Then, we headed to the Mater Mother's hospital to visit the special care unit nurses, the midwives on the eleventh floor, and the lactation consultants. By the end Zupe, having not napped all morning and early afternoon, was a sobbing heap and we had to limp away. (Sorry Gail - he is usually a happy boy.)

YES! We are FREE!!
From Zuperfliegen

(First official "I've got no tapes 'cause I don't need 'em" photo!)


Flicker said...

I'm so happy for you! (and Kevin and of course Zupe) So nice that you can go out and enjoy the spring flowers sans oxygen tank.

NNV said...

Thanks, Flicker. I'm most excited that we can now travel to the US to share him with family.