A Rough Night And An Even Worse Morning

Parker came out of the cath lab safe and sound. After being wheeled into recovery Dr. Day gave us an overview of the testing results.

Parker’s first Heart Cath showed his pressures at 117, with medications not showing much improvement.

Normal is 25 and under.

Yesterday’s results showed that his baseline pressures (without meds) to be 58. Twice normal.

With meds they were able to bring down his pressures to 38.

Normal is 25 and under.

Dr. Day was disappointed that Parker’s pressures weren’t lower. His last echo showed no signs of raised pressures.

Unfortunately Parker’s crit was way low yesterday and is BNP elevated. If I would have known that beforehand I would have held off on this cath until his crit and BNP looked better.

Dr. Day did tell us that after Parker’s first cath it was believed…or more like expected….. that Parker would die. Parker can live with these new pressures, but not without meds and oxygen.

Right before we were discharged, Dr. Day came up to talk with us again. He told us that after crunching some numbers he was feeling confident that Parker’s pressures would go down as he grew and his airways opened up more. He said that he wouldn’t say that he expected it, because in this business he no longer expects anything, but he was confident and optimistic.

I like confident and optimistic.

And while we may not have received the BEST of news, we did received better news than before……which is good. Cutting his baseline pressures in half is a good thing.

I’m just greedy. I want NORMAL pressures. No meds. No oxygen.

Dr. Day gave us the go ahead to have Parker’s reconstructive bowel surgeries performed. These surgeries will come with higher risk because of the still elevated pressures.

But because Parker’s blood has a clotting factor that makes his blood thicker and this could be playing into his elevated PH pressures, this issue needs to be addressed. But because it is treated with blood thinners, it can’t be addressed until Parker is no longer bleeding from his stomas. And the stoma bleeding will only be corrected with these next two surgeries.

Have I totally confused you yet?

We brought Parker home, hooked him up to all of his machines and were quite dismayed to see that he was only satting in the low 80’s while on NINE liters via his trach mask.

Slight panic attack.

20 minutes later we officially upgraded that panic attack to MAJOR status.

Fortunately Reed was able to get Parker on his vent and after a bit his sats took mercy on us and settled themselves into near normal values.

This morning Parker has been extremely agitated, frustrated and doesn’t quite know which end is up. This is to be expected because of the meds they used to keep him still after his cath.

His Mom is feeling a bit of the same way. Alas, his Mom has no meds to blame for her disposition.

While I am absolutely thankful for the progress yesterdays values showed, I had secretly harbored hopes of Parker and I being able to re-enter the real world. Being house bound 24/7 can play with a girl’s mindset after awhile.

And it ain’t pretty.

I worry that Parker’s lifetime experience base is being built solely between the four walls of our home. But with his baseline pressures still elevated we will need to continue our ever vigilant (read: can’t go anywhere) watch over his health.

But this kid is worth it.

I’ll admit I’ve been in a bit of a funk lately. Waking up to newly multiplied piles of laundry and a house that could yet again use a major overhaul didn’t help much. I would so love to have the Merry Maids ring my doorbell today, followed by a giant delivery of healthy WW friendly dinners for the next month.

Since we know that isn’t going to happen I’d best take advantage of Parker finally collapsing from sheer exhaustion and get a few things going around here.

Just as soon as I share a few pictures from yesterday. Because, as you know, everything’s better with pictures.


Proof that I really do belong to Parker.


One VERY growly camper. Come closer at your own risk.


Still not real thrilled to be here.


A little more mellow now that the drugs are on board.


Totally exhausted after a morning of thrashing and agitation. He zonked out right there and I didn’t dare move him for fear of him waking up.

If you don’t see me updating for a bit, worry not. I’ve got lots of loving and snuggling to do on my littlest of guys.

Along with that mountain of laundry I mentioned earlier. Cause, you know, the fun never ends around here.


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Countdown to a Heart Cath

***Update to the Udate: Parker has been in the cath lab for about an hour now. He was so not...