Sunday, January 24, 2010

On Things That Suck

I hereby complain!

Tom had a perfectly lovely day with Jane yesterday, and then went to the Museum of Science today for another fun outing. So while Sarah was doing this:

I had to deal with this:

Oh, I know what you're all thinking. "But it's Jane! Look at her! So sweet!" People, you have no idea what you're talking about. She looks perfectly innocent in that picture, and at that moment was being... okay. Ish. Her oxygen was at 100% all day. ALL. DAY. Shortly after that photo was taken, they tried suctioning her to see if they couldn't work out some gunk and get her saturation levels up. She was hanging at 91-92, and an A- is just not good enough at a Harvard-affiliated hospital. No sir.

So they did the full open suction, with chest compressions and bagging and all that craziness and she just did not come back up. She was sitting in the 60s, and slowly crept up to the 70s. She was getting a C. At Harvard! Bad. They switched her oximeter from her foot to her hand to see if they could get a better reading. So now she's hanging in the low 80s. They repositioned her. They gave her Versed. They gave her morphine. They waited. I waited. I asked what was going on and the nurse practitioner told me she was shunting. And, just like you are now, I was all "Huh?" And the NP said, "Well she has a hole in her heart and... "And I cut her off and said, "No, the PDA was ruled out." And she said, "Not a PDA, a patent foramen ovale."

I did not know this. One might think this would be information a parent would be given. One might be wrong.

Dr. Google tells me that a PFO is usually no big deal (see here), but can be a big deal (see here). It's a small hole, but the pulmonary hypertension may be making it worse. Or something. I don't know because NO ONE TOLD ME ABOUT THIS.

So, the NP's concern was that the hole was allowing oxygenated and unoxygenated blood to mingle (that would be the shunting) and that was why Jane wasn't able to bring her saturation levels up. (Anyone lost yet? Hang on, it's almost over.) Finally, she ordered a chest x-ray just to be sure that there wasn't a lot of fluid accumulating in the lungs. They picked Jane up to put her on the film and heard a squelchy SCCKK! in her chest.

Turns out a nasty MUCOUS PLUG had been blocking the way, and repositioning her knocked it loose. That's right, a big fat loogie was responsible for me spending three hours mentally preparing myself for explaining to a three and a half year old why her sister was never coming home. IT SUCKED.

So they suctioned that thing out and her sats went up to 95 and there she stayed for the rest of the afternoon and evening. Still at 100% oxygen, but getting a solid A on her sats.

As a side note, the secretions and loogie they'd been getting out of her were yellowish (ew! TMI! TMI!), so they're a little worried that she's developing yet another infection, or the old one is coming back.


10:00 UPDATE

Um, not better. In fact, back to satting in the 70s. (Raspberry -- 100% oxygen means that the air she's breathing is basically all oxygen. The saturation level is a measurement of the percentage of hemoglobin carrying oxygen. It should be in the 90s.) Since she's already getting only oxygen, there's no turning up the machines or anything. Which is why they're suctioning to remove physical barriers, and they just changed her trach to make sure there was nothing blocking the tube, and they've given her morphine and Versed to calm her down and try to help her relax so that she isn't needing more oxygen than necessary. Also, they're giving her antibiotics now -- they're not bothering to wait for the results of the culture.

The doctor should be calling us back by 11 to let us know what's what.

11:00 UPDATE

So. Her sats are now up to 84. They no longer think it's a shunt at work because she's oxygenating too well for that. Her blood gas was awful -- her CO2 was 163 or something, which means she's not getting the carbon dioxide out of her lungs. Right now, the guess is she's either clamping down (not a realistic bet, since she's so sedated) or the bleb is making trouble. They're going to put her under the paralytic again, and maybe go back to the oscillating ventilator (remember? from way back?) in the hope it would be better for gas exchange. Tom just paged Dr LR to get him involved -- it's a fellow calling the shots, and while I'm sure he's perfectly able... well, yeah. You'd all do the same.

12:30 am

We're at the hospital. She's paralyzed, on the oscillator, satting 93. But they don't have many more tricks if something else happens tonight.


Cat said...

Theraputic xrays come through again!! See - xray techs rock, too. We don't just make babies cry.

Meredith said...

Enough already is right. Here's a virtual Scotch for you. What a day.

MiHae Hooper said...

I'll second that Scotch for you.

Raspberry said...

Enough already? How about this. There's enough. Then there's too much, man. Then--there's this. Cut it out right now, cosmic force responsible for this or at least not intervening. Cut it out. Stop your shenanigans, or I will mess with you something fierce.

> xray techs rock, too. We don't just make babies cry.

Great bumper sticker.

I have to admit I don't understand why, if A- isn't good enough, then A+, or 100, isn't perfect. Tia, I know you explained it to me, but I confess to confusion. Maybe there's a diff. between her sats and her oxygen? (Don't bother explaining it, but maybe somebody else will...)

Anonymous said...

Ohhhh T,
I'm so sorry you had such a stressful one today. How could they have not told you??? AAAAaaaaaa! We're right here with you, every day- admiring your incredible writing and most importantly praying for Jane (and you and Sarah and Tom) Sarah looks so big; Maggie misses her so much and I miss you both too. Keep on keepin on... your strength is amazing.

mommatosena said...

Praying for your sanity....I am so sorry that you have and appear to be continuing to have an awful time of it....hoping that the update later will be a better one...thinking of you all.

Meredith said...

Thanks for the update, Tia. Glad to hear you're paging Big Doc, and that the #s are improved. Hope the night goes well and tomorrow you get more info and good news.

Here's another virtual Scotch for you...

Amber said...

Oh what a wretched day, Tia, I can't even begin. I am furious, FURIOUS, for you, though, at the mind-spinning information (or lack there of), at the rule-out approach failing to rule out something as basic as a mechanical blockage, at the universe asking you all to take just another heaping plateful...

3 things, though:
PFO sounds functionally like PDA--could it also be sewn shut and taken off the table as an issue? (Not that that doesn't leave SURGERY on the table...)

Have they x-rayed to see the trach tube position? Making sure it is neither too shallow nor too deep--both situations could account for poor sats (and given how your girl is growing (yay!), the positioning would likely need adjusting).

Any question on whether the drug cocktail could be a culprit in respiratory depression? I know it's always a cost/benefit thing, but then again it is a cost/benefit thing.

BTW, never got to meet Jane in the nursery, but were you ever right--man, those cheeks! She is lovely, and Sarah holding her hand is about the most precious photo I've seen. Wishing you all all kinds of strength and envisioning O2 in the 90's...

Tasha said...

Praying the oscillator does the trick. Holding all you hands in spirit.

artandsoul said...

Praying for you. For Jane. For Tom. For Sarah. Praying and hoping these Harvard wags get their A game on right now.

Anonymous said...


I hadn't checked in for a couple of days! And I saw more mutual friends mentioning you.

Lots of prayers and positive energy going your way!!
Hugs, Mary Lou