To end our trip to the hospital, we visited Isaiah's pulmonary doctor, Dr H, he's the doctor that keeps track of everything related to Isaiah's breathing. I love him because he sees Isaiah. He watches Isaiah's breathing while he's with him, but you wouldn't know it when he's interacting with Isaiah, and that just gets me...because it puts Isaiah at ease...very much like Dr. B.
I was nervous for this appointment. We may have started weaning Isaiah off of his nighttime c-pap quite a while ago. Whoops. Isaiah doesn't tolerate the c-pap cannula or mask at all. He yanks them off, he flips his lid if we anchor them on him, and we just honestly haven't felt like this is a necessary fight anymore because we feel Isaiah has been doing so well.
When Isaiah's pulse ox beeps, it's because he's kicked the sensor off or it's almost off. Isaiah hasn't had a real dip in his oxygen in months. His oxygen saturation level almost always reads above 96....the only time we've been truly concerned in recent months is when he broke his arm and leg and his oxygen level sat at 95 while he slept. We spoke to his doctors at the time and learned it was likely due to his pain level since he was breathing quicker thus not getting as much oxygen as normal, but it was still a safe level so there were no real concerns about it.
Since the last time we saw Dr H, I've learned that Isaiah breathes a million times better when he sleeps on his side, so if I ever hear apnea signs while he's sleeping, I tend to check on him, see that he's laying on his back, and turn him onto his side to avoid anything happening with his oxygen...but most of the time he puts himself on his side so we don't hear signs of apnea like we used to.
I believe his obstructive sleep apnea has greatly improved but is basically nonexistent when he sleeps on his side- the apnea is completely positional for him, and only occurs when he sleeps on his back. I'm actually going to talk with his PT when we see her about putting a roll under his shoulders when he's on his back and seeing if that would help while on his back.
We spoke quite a bit about my findings about his apnea with Dr H, and guess what...he is happy with everything! He is thrilled with Isaiah's progress. They did a test to see what his CO2 level is (normal levels are between 35-45) and it was 37!! WOOT WOOT! This means he's been doing a fantastic job breathing efficiently on his own...he's not holding on to any extra CO2 like he did in the beginning of his life.
Dr H said to continue to monitor Isaiah's oxygen level with the pulse ox but we can continue our life off the c-pap- it can stay in the closet (unless Isaiah needs it). He gave the ok to finally pull Isaiah's medicines!...omg am I dreaming? He wants us to wait until the end of flu season to completely stop them, but says we can cut both Isaiah's daily Pulmacort treatment and his prevacid dose then.
He's asked us schedule a sleep study that will hopefully show Isaiah's progress so that we can officially get the c-pap out of our house....not looking forward to a night in the hospital full of wires and goop, but we are looking forward to its results.
Meanwhile, we are still waiting to hear from Isaiah's neurosugeon to find out the plan for what he thinks is best to treat Isaiah's hydrocephalus. We're hoping to hear before the weekend but if not, I will be stalking come Monday morning. ;-)
We're pretty tired right now; it's amazing what a ride on an emotional roller coaster can do to your energy level, but we're optimistic. We're optimistic about Isaiah's future sleep study and we're optimistic about solving his issues with his hydrocephalus. Guys, he will be ok. He's Super Isaiah after all, isn't he? ;-)