Monday, May 11, 2015

Knock at the door


I can remember the day the oxygen tanks were delivered to our house like it was yesterday. Ellie was 4 months old, and I couldn't believe this was happening to our family.  We had been to see the endocrinologist and sleep medicine doctor almost simultaneously.  I had been researching treatment options, and educating myself on PWS, and we both knew we had to get Ellie started on Human Growth Hormone injections (GH) immediately.  GH would help her with her low muscle tone, lean muscle mass, height, and small hands and feet. Endocrinology had ordered a sleep study right away, and it was a terrifying night.  They hooked Ellie up to all kinds of wires and probes, and expected us both to sleep.  I was a nervous wreck because we were on a strict feeding schedule and my poorly little baby was hooked up to all these tubes and wires again.  How on earth would I get her to eat? Somehow, we made it through the night.  But life was about to change again.

So, in a matter of months we had two things added to our lives that I never saw coming...nightly shots and oxygen.

Oxygen, could my baby really need oxygen?  Oh, the day the tanks arrived to our house, it was a kick to my soul.  Ellie's sleep medicine doctor had called us immediately after the sleep study, and I knew that couldn't be too great.  She had pretty severe to moderate central and obstructive apnea. We threw ourselves into learning the best ways to keep the oxygen on while she slept, made sure we carried tanks with us everywhere, because you didn't know when Ellie might fall asleep. When she was asleep, that was when the oxygen had to be on...you see, her brain doesn't tell her precious body to breathe in her sleep.  So that results in central sleep apnea.  Also, her airway is floppy (low tone again...see, I told you it is everywhere), and causes obstructive breathing/apnea as well.  The oxygen allowed her to get good, restful, deep REM sleep.  Sleep is so important for our whole body to function effectively.  Individuals with PWS tend to suffer from sleep issues because the hypothalamus (the part of the brain that has a defect in those with PWS), so we knew Ellie needed to get good sleep.  Our doctor also mentioned that by treating sleep apnea aggressively, it could even boost one's IQ by 25 points.  He didn't have to say anything else to us....that nasal cannula was in Ellie's nose anytime those pretty blue eyes of hers were closed.  We vowed that we would do all in our power to see that she was able to live the best life possible...even if that meant oxygen and shots.

They both have become our new normal.  Oxygen has since turned into a CPAP or "nose hose" machine, and we constantly hear, "Oh, my grandpa has one of those."  We just grin and nod our head yes, "so does our 3 year old...who would've thought?"  The shots are just a new nightly routine, and Ellie has been so strong throughout.  They haven't come without struggle, but looking back I am no longer scared of these things like I once was.  We adapt, we move forward, we work through the difficulties, celebrate the accomplishments, and look forward to the knock at the door because we know that GH and oxygen/CPAP are the best treatment options for Ellie right now, and we will need refills!

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