Tuesday is Parker’s cardiology appointment. We LOVE Dr. Day, but we don’t necessarily like having to actually see him, if you know what I mean. Dr. Day has taken excellent care of Parker when other doctor’s have shrugged their shoulders and walked away. It was Dr. Day who finally believed us when we told him that Parker was refluxing so badly that he would wake up in the morning with formula in his mouth. It’s Dr. Day that I trust to take Parker back into the cath lab. What Dr. Day says is what goes as far as I’m concerned.
But it’s also Dr. Day who has had to give us some of the worst news a parent could ever hear.
It’s Dr. Day who has managed to get Parker’s PH pressures from a whopping 155 (normal is under 25) to a now mildly moderate. To be fair we’ve other specialists on our team who have helped with this achievement , but it is Dr. Day who I insist on running everything through. It is Dr. Day I tend to turn to for a rabbit to pull out of a hat. Poor guy, I’m pretty sure he is more concerned about me imploding (can you imagine the mess?) during an appointment than what Parker’s pressures might be that day. Luckily I’ve learned how to hyperventilate through my nose only, hopefully helping to disguise the PTSD that tends to take over beginning a few days before an appointment.
Parker’s PH, like Parker himself, doesn’t follow the typical rules of the game. It isn’t idiopathic. Nobody expected it to go down from 155 to where it is….better, but still too high. Each time we’ve done something to address Parker’s PH we’ve seen some improvement.
- First removing his tonsils and adenoids that were almost totally occluding his air way.
- The medications.
- The trach.
- The g-tube.
- Going NPO.
- The Nissen.
My heart tells me that there is still one more thing that needs to be addressed. Something hidden so well that we are all missing it. Something that could bring those PH levels down to at least a solid mild…..to a place where we could add a few more years to his life.
I’ve never been one to give up. And while I don’t consider myself to be particularly competitive, I won’t give up the fight to optimize my son’s lifetime. So when Dr. Day tells me what he believes Parker’s lifespan to be, I look him in the eye and add 10 years to it. I’ve seen too many miracles to believe that the coffers for Parker are empty.
I’ve done pretty well keeping the PTSD at bay until just a few days before Parker’s appointment (which is Tuesday morning, btw). I hang on tightly when our Pulmo tells us she believes that Parker is getting better. I drink it in when our ENT tells us that Parker is a fighter and we need to make sure we have a plan in place for when Reed and I are too old to physically care for our youngest son anymore.
But I can feel the fear as it sneaks up on me from deep inside where even my therapist has yet to make it to.
I’m asking for prayers. Knowing there are those Praying for Parker keeps me going more than you may understand. I believe in petitioning our Father in Heaven with the desires of our hearts that are good. And I can’t think of any thing more firmly in the good category than our Brave Hero. Parker’s name on the Temple Roll or as part of your next fast would also be so appreciated.
I will be spending the time not on my knees cleaning my house from top to bottom. Because potential bad news is always easier swallowed when your house is sparkling, no?
I’m doing better keeping the fear at bay, but I’m not there yet. Who knows? Maybe a little bit of fear is actually a good thing, keeping a special needs Mama on her toes and determined to find the best treatments for a Hero brave enough to come as far as he has.