Friday, December 4, 2009


Well. That was a hell of a day.

I took Sarah to her pediatrician this morning. Amazingly, he gave her a clean bill of health (sort of, but that's not really relevant). I dumped that kid at school so fast she said goodbye to the dust cloud kicked up by my tires.

I may or may not have broken another land-speed record getting to the hospital, but if I did that would be a BAD EXAMPLE to set for any nieces or nephews who may be reading this blog and obviously I would NEVER condone that sort of behavior, etc.

I arrived to fine Jane awake and playing with Awesome Developmental Therapist Thea, who said that Jane might get the chance to start trying to breastfeed as soon as she's stable. When that may be is an open question. I'll get to that.

ANYway, Jane was just beautiful, watching me for a solid twenty minutes until she slowly drifted off while I rubbed her belly. She even smiled! It was lovely. Tom and his colleague Gary (hi, Gary!) showed up on their way home from a conference in Boston, and shortly thereafter we got a vocabulary lesson (sorry, Gary!).

The term? "Bronchospasm", aka "clamping down." Here's the definition from the very useful website, Aaron's Tracheostomy Page: "Generally it is a reversible tightening of the muscles in the airway, causing narrowing and blockage of the airway. If gone untreated, it can threaten the life of your child."

Yeah. So, it seems that what happened was that some water got into Jane's lungs from her vent tubes (the air is humidified, and water can pool in the tubes) and her airway clamped down to keep the water out. Which it sort of should do, except that it takes a while for the airway to relax enough to get air in, so she desatted (blood oxygen level went down) from an excellent 95 to a horrendous 41 and bradyed (bradycardia -- the heart rate goes down) from the maybe 160s to the 30s. Bad bad badbadbad.

They had to bag her (you know, manually inflating the lungs with the squeeze bag) and turn the oxygen all the way back to 100%. She turned blue before they got her back. It SUCKED.

And it turns out it also happened at 6:00 this morning.

Now, there are kids with BPD who clamp down but most of them have been doing it all their lives. Jane had never before done it in her life and now, four days after getting the trach she does it twice in 12 hours? NOT a coincidence.

So Tom just called down and talked to the nurse practitioner. They think changing the trach tube to a slightly longer one may help. Unfortunately the ENT surgeon isn't available tonight, so Awesome Nurse Leeza needs to keep an eagle eye on our girl until morning. Amazingly, the NP didn't really think of the clamping down as directly causally connected to the trach until he pointed it out. I'm just really really glad he made the call.

Fortunately, she's resting really well and has been since the, um, "episode" this afternoon. Her oxygen was back down to 37% within the hour, and her heart rate went back to normal almost immediately.

I would so much rather be studying for the SATs again than learning this kind of vocabulary, I can't even tell you.


artandsoul said...

She looks so peaceful sleeping there. Not at all like someone who can scare the ever-living-bee-jeezus out of someone!

I think you're right - the SAT or even GRE vocabulary would be preferable. Blech.

That is an amazing site though - Aaron's page. Very nice to see all those smiling pictures, and him all grown up. But still. I had no idea there were so many amazing moms out there.

Damn y'all are good.

She is a cute little pudge. And I thought the all systems returning to normal so fast is a good sign.

Sending you hugs and prayers and support.


Rachel said...

Geez. How scary. I hope that the longer tube does the trick pronto.

artandsoul said...

Tia - I just wanted you to see that there are even more prayers going up for you all:

You can see the Monastery at

Hugs to you all today.


tia said...

That's just beautiful, Cindy. Thank you.

I hope your time at the monastery recharged your batteries. Looks like an incredible place.

artandsoul said...

It did. It is. Wish I could bottle it up and send it to you - and you wouldn't even have to store it in the freezer!

Hugs etc.