Just Another Frantic "Someday"
Guest post from Tammy - her blog can be found here. she introduces herself as follows. My name is Tammy. I live in Utah. I am a
mature Mormon Mom with kids ranging from 19 years-18 months. It my 18 month old baby, Parker, that I blog about. Parker was born with Down syndrome. People have a hard time believing me when I say that the Down syndrome isn't an issue at all with Parker. We already had 5 'typical' kids and were ready for a new 'flavor'. =) What we were totally unprepared for were the health issues that came along with the extra chromosome. I think that I offer a different perspective. As a mom of a large family I come with a wide experience base, and even wider hips.
Parker gets sick a lot. A whole lot. You'd think that we would be used to this by now. We're not. Although we can identify certain clues in Parker's behavior that makes the hair on the backs of our necks rise in that all too familiar warning: Parker's getting sick. Again.
One big clue is Parker's inability to tolerate his CPAP machine at night. Parker has severely obstructive sleep apnea. When he sleeps his trachea collapses and it makes it hard for his heart to send blood to his lungs via his pulmonary artery. This increases the pressure in his pulmonary artery which in turn makes it even harder to get blood to his lungs. You add that to his chronic lung disease and you get a whopping case of Pulmonary Hypertension. This is where the CPAP comes in. Each night we put a mask on Parker that provides both extra oxygen and continuous positive pressure to help keep his trachea open and reduce the strain on his heart. It looks a lot like a mask a jet fighter pilot wears. On the very best nights it is simply an irritant. One the nights where he is getting sick, he can't tolerate it. He wakes up gasping and choking.
The last two nights Parker hasn't been able to tolerate the CPAP and that anxious feeling has started creeping up the backs of our hairlines. Both Reed and I begin to wonder if this will be the beginning of our next PICU stay. How far will this set back Parker's progress? Will the doctor believe us when we say there is something going on even if they can't see into his very tiny ear canals or the fact that kids this age aren't supposed to get sinus infections?
I got this same run around when I kept trying to get someone to believe me when I said that even as a young baby Parker was breathing through his mouth. Nope, Mom, can't be. Young babies never breathe through their mouths. Imagine the looks on these doctors faces when I showed them the report saying that Parker's adenoids were blocking his airway over 90%.
Knock, knock, guys. Parker's extra chromosome gives heed to throwing out the 'usual' and 'typical' thoughts when considering his healthcare. You gotta think outside the box when it comes to this kid. You have to explore any and all possibilities. I have printed out what I call Parker's Law and I have posted it before at his bedside when he has been in the hospital. It goes like this: "If there is anything strange, bizarre, or totally unexpected that could happen, it will happen to Parker and in a VERY big way. You have been officially been warned."
Maybe now you can understand the thoughts I was having as I was calling the answering service this Sunday morning hoping to get into a weekend clinic. I can't help the fact that in my heart I am somewhat frantically praying that I can be able to still hold on to all the 'some-days' we have planned for Parker. The 'some-day' when he is healthy and strong enough to crawl. The 'some-day' when he is healthy and can have his bowel surgery. The 'some-day' when he can just be a kid and run and play and make messes and drive us nuts just like our other five kids. The 'some-day ' when he is healthy enough to not freak us out with worry every time he gets sick.
We got lucky today. It took Reed and hour in the waiting room with Parker before they were seen by a PA. But the PA listened and prescribed an antibiotic. Even though he was placing his bets on this being something viral. Well, funny thing is, when Parker is sick just one shot of an antibiotic will turn things around. Of course the doctors just humor us when we try to explain this to them. But we know better. We are away ahead of them in figuring out this extra chromosome thing.
While still not feeling good, Parker has perked up tonight. It won't be a CPAP night, but it won't be a PICU stay either. Each night without that CPAP sets us back a little in our goal to have Parker's PH numbers recede. So many setbacks tend to really get you down after awhile. But I found this quote. I can't give it's author credit because I don't know who it is. But it made a difference in my day today:
"Courage doesn't always roar-sometimes it is the quiet voice at the end of the day that says, "I'll try again tomorrow."
And as long as Parker is willing to keep trying, so are we. So are we.
So sleep well, sweet boy. And dream of that 'some-day' when you will be healthy and able to run and dance and play.
I love you.