April 2012
For Spring Break we didn't go anywhere. We were planning on staying here and finding fun around Salt Lake. I had lazor focus on my projects to get our house ready to sell.
Frankie had a cold but he was happy. It is common for kids with Down syndrome to drop in oxygen levels when they get a cold. They can act fine but at the same time not get enough oxygen. I have a pulse oximeter at home to test him for low oxygen when he has a cold. With this cold, his oxygen levels were normal.
On the first day of the break, Frankie was eating a pre dinner snack in his high chair. Little bits of crackers and small pieces of string cheese. While he was eating, he started coughing/ choking on food. I examined him and he seemed to be struggling to breath a little. I patted his back firmly but couldn't figure out what happened. He was breathing, no food in his mouth at this point and his lips were turning blue. His tummy seemed to be working hard to contract and to breathe. He started acting lethargic. I tested his O2 levels and they'd jump all over the place. He should always be 90 or above. Well he was at 87, 90, 84, 79.
Kevin just arrived home from work as I had just hung up with the ENT doc who told me to take him in now. We live so close to the hospital that we figured it would be six's to call 911 or drive there. I was in a dead panic by now. It was not to long ago that we had called 911 from my Dad's emergency situation and My E.R visit for my allergic reaction (don't think I blogged about that one). To much trauma!!
The kids all climbed the car barefoot as Kevin sped us to the hospital.
I sat in the back with Frankie on my lap. Arms dangling, loosing color, blue lips, head bobbing and about to pass out. I was shaking him to stay with me.
When we got to the hospital I ran inside with him bobbing on my hip hoping he would not pass out.
His oxygen was 74 on arrival.
The doctors were unsure what had happened. They sedated him and scoped him to see if he had food in his lungs but it was clear. He was admitted for two nights. Which in hospital time felt like 10 nights.
I had all these fun plans of things to do with the kids on spring break but I got robbed and had to spend their days off school, stuck in the hospital.
It was the worst!
He had a hard time recovering from the scope since he had a cold.
The test results came back positive for Rhino virus.
The common cold.
Here is Frankie singing,
"If your happy and you know it.... face will surely show it."
The only explanation as to why Frankie went blue at home and struggled to breath was that maybe he choked on the string cheese, threw up stomach fluids and then aspirated the stomach fluids into his lungs.
It wiped him out.
His oxygen kept dropping while he slept so they wanted to keep him there. But I kept assuring them that it was because he had a cold.
Frankie hated anyone who came near him with a stethoscope.
We got so sick of the cords and things. It was hard to keep Frankie entertained!
A visit from the kids was just what we needed.
We finally got sent home with oxygen for Frankie to wear while he sleeps and an order for a sleep study.
Frankie aspirated again a month later at home eating... small bits of string cheese.
Thankfully Kevin was home and we had a Decadron pill ( a bronchodilator) from Frankie's croup days.
Frankie's oxygen began to drop but after we gave him the pill, his oxygen came back up, he was fine and we've avoid the hospital on that second one.
So Frankie, who has lots of teeth and 4 molars is restricted from eating string cheese. He shovels it and swallows it and since it doesn't dissolve, he chokes.
All of this = not fun.
*****
Sleep study day.
It is common for kids with Down syndrome to have sleep apnea. And due to his low oxygen levels (while sleeping) at the hospital, a sleep study could help us determine if he has sleep apnea or not.
He was pretty good at allowing them to put on all the probes. Towards the end, he just layed back in my arms all still with this stuff hooked up to him and looked at me like, k-you've got me!
He had to sleep like this !
I slept in the Murphy bed next to his crib.
We were woken up at 6 am and he got all that stuff taken off of him.
Boy was he happy about that!
The sleep results are lengthy to report but the bottom line, no oxygen is needed while he sleeps.
Yay!!
A lot of info. But it's scenarios like this that help us fine tune Frankie's needs.
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