Made of Gray

Rambles from the PICU

Raising the Rare ChildHolly D Gray5 Comments
Didn't Eric do a good job? I might have to hire him from time to time to Blog while I'm sleeping.
Let me explain how incredibly scary the whole ordeal was........ I was blocking the sun from Caleigh eyes while she slept, I peeked a look from under my hand and Caleigh's tongue was hanging out of her mouth. I pulled my hand away and started rubbing her chest and head and got no response. She was BLUE. I yelled at Eric and pulled her out of her car seat as fast as I could. By then I had laid her on the seat of the car and Eric was there to do CPR. We didn't really panic, shock I guess, I called 911. And then, I was one of 'those' parents...........you know the ones.....the "why aren't they here yet?", " I can't hear the sirens", "Why aren't they hurrying?" Poor 911 operator........ It didn't take them long to get there, but the more Eric did CPR and the longer she wasn't responding made it feel like an eternity. Slow motion. We were in shock, how could this be happening, Caleigh has never 'not' breathed before. You know the rest of the story by Eric's post, but I can't stress enough how scary it is to have to do CPR on your own child, to watch her lifeless body laying there why you try everything in God's will to save her. I can still see her face every time I close my eyes, it was terrible.....
And, now for my public service announcement: LEARN the AMERICAN RED CROSS CPR procedures. It could save someones life and that someone might just be a loved one. Especially if you have a child. Without it, Caleigh wouldn't be here.
Ok on to little miss worry her parents to death, Caleigh. She is doing really well. Now that we have discovered her seizure problem, the medicine seems to be helping her tremendously. Caleigh slept through the night in her own crib. I changed her diaper once around 2am and then back to sleep she went. Right now the dose of the med is strong, making her sleepy, so that we can get it in her system quickly. So while she slept, we got some much needed shut eye. When we get home, I will explain the types of seizures that she is having, but in a nut shell she was showing subtle signs that we were chalking up her irritability, PVL and tummy issues. We think the reason she wouldn't sleep more than 10-15 min. in her own bed was that the seizures were disturbing her sleep patterns. She would cough, gag and wake up and she hasn't done that since we started the meds. I think we will slowly see more improvement in her irritability and sleep deprivation. I'm even praying for some sort of routine.
When we were at the GI docs office, we were telling him about her hyperventilating spells and our doc was very close to admitting her to the hospital. He went back and forth about it and we finally decided that since it only happened while we restrained Caleigh in some way, that he wouldn't admit her. I called him on the way to the ER, only being gone from his office for about 45 min, and he said that he should have went with his gut feeling. Yesterday, we told him that if he had admitted Caleigh, then she wouldn't have fallen asleep in her car seat and stopped breathing. We wouldn't have found out about the seizures and we would still have an irritable baby that no one can figure out. Everything happens for a reason and God was watching over us with his plan.
Caleigh's blood pressure has also been very high since she was admitted. We now have a kidney doctor and we did a renal (kidney) ultrasound yesterday and they found 2 gallstones. I'm sure we will start meds to help dissolve them today. Her kidneys looked great. Caleigh is on two different blood pressure meds and she seems to be stable on those. It seems like the list of Caleigh's doctors is growing by the day, but if we can figure something out, I'm all for more docs. We are also weaning Caleigh's oxygen down, right now she is at a quarter liter through a nasal cannula. Her Pulmonologist (lung doc) has been coming by to see her everyday as well.
Equipment.... as if Caleigh wasn't easily mobile as it is we will be adding to our hospital at home. An apnea monitor to make sure she is breathing, blood pressure machine and a possible set up for 'backup' oxygen just in case. At least we will be at home.
Caleigh is still in the Peds ICU, we've had orders to go on a regular floor for two days but Cooks is so full right now that we haven't been able to get a room. We are hoping for a room this afternoon, but well see. The ICU here is really rough. Very sad and not as private as it should be. It's been very emotional because of our situation, but I feel like we are living out the other families situations at the same time. I'm hoping my prayers for the other families will help but overall it is Exhausting.
That's all for now, thank you for all your kind words, thoughts and prayers. They help keep us strong as a family.
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