He wants us to bring Parker in on Monday for an echocardiogram.
These echocardiograms cause me more stress than I can even begin to describe. Enough stress that I usually request Reed go up for these appointments and I just stay home. But Reed has responsibilities he can’t excuse himself from and so it will be me and my Mom biting our nails during the procedure.
I’m stocked up on Zantac. Anyone got an extra Valium they could spare?
An echocardiogram is where they measure Parker’s Pulmonary Hypertension levels. The last two echocardiograms showed that Parker’s numbers were steadily rising. Rising isn’t the way we want them to go. If as in Parker’s case, PH numbers rise high enough, PH is quite often deadly. There have been two children on the PH list that I am on to lose their fight to this disease in the last few months.
One is hoping for a heart lung transplant before time runs out.
My shoulders are already tense. I know I won’t sleep well tonight. I can’t seem to get enough of Parker. I hold him to me as if just my determination alone could heal his heart and lungs.
We do have a bit of something going for us. Parker’s upper airway is a mess. It collapses when he sleeps and then his little tongue falls down over that, just about totally sealing off his ability to get the needed amount of oxygen to his lungs. This is a prime cause of Pulmonary Hypertension. If, by CPAP or a TRACH, we can circumvent this closed off airway, we have a good chance of reversing his lung pressures.
But at the same time Parker’s lungs are underdeveloped. When you look at Parker’s lungs on a CT you can see larger veins (think the large branches of a tree), but not many smaller veins (think the smaller branches of a tree). He needs those smaller veins as well as the larger ones so that his heart doesn’t have to work so hard to pump oxygen rich blood through his lungs. Underdeveloped lungs are also a cause of Pulmonary Hypertension. One that very well not be curable.
So, it is a double whammy. A bit of hope here a bit of despair there.
Monday’s echo will let us have a bit of a better idea as to whether Parker’s PH levels are due to his upper airway issues, and because of the CPAP are doing better. Or if they may be being caused by yet something else going on if when we get the results back and the levels are higher.
We went and had a blood drawn done today to check Parker’s BNP levels. The results from this test will let us know how hard Parker’s heart is having to work. His cardiologist also requested a stool sample be dropped off to the lab to check for Enteroviruses. The Echo virus, which can cause a heart to weaken, to be exact.
Buckle up. I’ve got a feeling it’s going to be a bumpy ride.
Now if I can just remember to breathe.
Super Parky!
I’m sorry Reed can’t take Parker to this appt and that you’ll have to go. I can only imagine how nerveracking it must be. He’ll be in my prayers for low numbers!
Oh, how stressful this all must be. But you will be just fine, I know you will because you’ve got many people praying for you and dear little Paker!
By the way, he’s the cutest super hero ever!
Hang in there!
{{{{HUGS}}}}
You’ll will be fine for the appointment…hang tough mom. Know that my prayers and my boys’ prayers (they’ve officially adopted Parker) are with you. Praying low numbers.
We will keep you in our thoughts,hugs fr Austria
You and Parker are in my thoughts and prayers today.
That last picture! He suddenly looks like such a big boy!
And you’re doing such a good job with him. I can’t even begin to imagine how scary this is – I can’t wrap my mind around it – but I know that you’ll see him through this.
Hope all goes well Tammy!!! Parker is in our prayers!
Yes, remember to breathe…
I wish I had some valium to send you, I would need it too! I can’t imagine what you guys are going through! Many hugs and prayers coming your way!
Is it a bird? A plane? No – it’s SUPER PARKER! Love that picture…
Your post made me hold my breath several times. Would you like random email reminders to breathe? I can do that.
hugs and prayers
I don’t have Valium, sorry. Good luck with everything.
He looks so cute as Super Parky!!!
I’m sorry you have to go through such a stressful day. I hope that there is some good news in there for you and Parker. Keep breathing…
I’m afraid I’d feel as tense as you do, Tammy. My goodness, it’s scary. Makes me wish I could breathe for him.
Super Parky. How cute he is!
Sending lots of postive thoughts and many hugs your way. Wishing all the best with his test.
Hugs. We’ll be praying for good news.
I will be praying for all of you!
Prayers for you all Tammy.
love,
Annie
oh Lordy….in, out, in, out….now that was for your breathing but if you choose to use the directions for anything else it may also relief stress.
((hugs)) and you know you can do it, heck, so do we!
Oh girl!!!!! If only it would all just miraculously heal! Life is soooo rough. Praying and thinking about you all – wish we were closer so that we could do something more to help.
Let us know how it goes – we will be thinking about you all day.