Saturday, December 5, 2009


I am extremely happy and relieved to report NO NEWS.

Here's the current thinking on yesterday's, ahem, "spells". So, the second clamping down was clearly the result of the water getting into Jane's lungs. The first, the one earlier in the morning, had no obvious cause BUT Awesome Nurse Adrienne did notice that somehow some milk had gotten into the suction catheter. (In the picture below, and by the way: BELLY, the suction catheter is that multi-colored thing to the right of Jane's face that looks like it's encased in Saran Wrap -- it's used to get any gunk Jane's trying to work out of her lungs [mucous, loogies, etc.].)

The catheter is a closed system; the only way for food to get in is if it's drawn up from airway. Which means it's getting down into her airway after she spits up. Which, you know, BAD.

Awesome Respiratory Therapist Lon realized all this, and concurrently realized that there may be a simple solution (please, god). The tube in Jane's trachea has a little cuff around it that can be inflated or deflated as necessary to fine tune the fit. If it's inflated, in theory it should block anything from getting down into the airway from her throat. So he pumped it up and so far, no more episodes. Yes!

The ENT resident came up to check on Jane and said that a longer tube wouldn't help with the spells, so let's hope the cuff does the job. On Monday, the surgeon will come up and do the first trach change (the trach will be changed weekly from here on out; the surgeon does it the first time and checks to see that everything's healing correctly). He's putting in a different, more flexible tube, and I'm hoping that might make Jane more comfortable; it'll bend as she moves. The new tube lies differently than the old set up did, so I think that's one of the things that's throwing her a little bit. Her whole life she'd had a tube lining her airway in a particular way and goes to sleep one day, wakes up and finds everything changed? That'd be tough on anyone.

She spent most of the day sleeping today. Her breathing has been fast, she's breathing hard when she's awake, and her heart rate is uncomfortably elevated unless she's snoozing, so I'd just as soon she stay sleepy. Today she wouldn't fall asleep unless she had her pacifier AND was holding my finger AND I was stroking her head.

I'd accuse Jane of being high maintenance, but the poor thing did just have surgery. She can have as many treats as she likes until she's feeling better.

It's hard to say how she's feeling right now. She's definitely agitated when she's awake. Is she in pain? Just uncomfortable from the new situation? Struggling because of the lobe? All of that? I sort of think yes, to all of it.

In less consequential news, I was trying (mostly unsuccessfully) to get a handle on the dumping ground that is Sarah's playroom the other day when I found a picture of Tom as a baby.

Quite a resemblance, don't you think? Tom's parents, after visiting Jane earlier this fall, said as they were leaving, "She could have been one of our babies!" It wasn't until I saw these pictures side by side that I understood what they meant.


artandsoul said...

Sheeshalmighty, what a day! I'm glad that she seems restful and able to sleep. And she is completely adorable.

Love the belly! Love the chins!! Love her fingers curling around yours!

She certainly does have a lot of her dad in her looking at those pictures side by side ... but I think the picture of you on the blog also looks a bit like Jane!

So, definitely a family that's meant to be together!

I'm going to go Google the trach stuff, because I don't think I understand what exactly it is doing there (besides giving Sarah something to draw) ... it's back to Aaron's page for me.

Have a good night -


tia said...

I keep meaning to say that that picture is actually of my mom when she was about three. One day I will hunt down one of myself -- you can see a real similarity between my mom, myself and Sarah, each generation fairer than the one before.

Any time you have specific questions, Cindy, don't hesitate to ask. I know I gloss over things I've gotten super-familiar with (like suctioning) but that I haven't discussed in detail in the blog. By all means, call me out if I'm skimping! Or, you know, google. Which is what I do half the time, anyway...

Rachel said...

Someone sure looks like her daddy! Yay for no news!

artandsoul said...

Well, your mom is adorable! You can tell her I said so!

My questions about the Trach were pretty basic -- like how the heck does it work? :)

I think Aaron's Page is great, I read a lot of the links, and wow I am overwhelmed at what so many people go through!! I had no idea.

My question about Jane was this: does she have a trach because she is on a respirator? And, do they have her on the respirator because of the bleb?

It feels kind of like prying, but having been through some serious hospital thingies (for my husband and my daughter) I tend toward wanting all the details and background and straight up stuff.

You don't gloss at all ... I'm totally impressed and amazed that you can sit down and write so clearly and informatively with all you're going through.

Kudos and thanks!


tia said...

Jane has a trach because she's going to be on a ventilator for possibly a year -- WAY too long to have tubes in her mouth. She'd be a developmental mess.

She's still on the vent because of all of her lung issues. The bleb's just the newest. Her lung disease (BPD, or bronchopulminary dysplasia) is the main reason, and it's quite severe. The lung tissue has been damaged by the vent itself, but she needs the vent to gain time for her lungs to outgrow the damage. It's a slow process, which is why she'll be on the vent for so long and why the trach became necessary. It's a pretty crappy cycle.

Hope that helps -- and you're not prying. I'm already putting all this stuff out there!

mommatosena said...

OK So I am feeling better cause quite frankly all the episodes scared the crap out of me....don't like blue on a baby....not a good color. Seems though that everyone has a handle on it and that it is fixed...cause yeah it's fixed...I thought that she looked like daddy all along but saw a strong resemblence to the mom pic and to sarah and you ofcourse. As Cindy said....a family ment to be together! Hoping this bleb thing starts to get better as that seems to be the major inconvience at the moment. Maybe I am totally wrong! I am praying now for stability so that you can nurse Jane as her need for sucking seems like it will be a good match for a boob and will make things a bit easier like stroking head while finger holding! She is precious Tia and she is gaining ground steadily and there has been loads of great forward movement; the recent back steps stink but better to get this stuff figured out while at the hossy cause I just know that the next step is H!!! Hugs and love and as always prayers of healing!

artandsoul said...

Thanks Tia. I understand better now. I can sure see why taking this all one step at a time is the best way to make it through day after day.

Stability. I like the sound of that.

I sure do love the pictures of her sleeping there all cute and cuddly and serene. Kids! :)

Have a peaceful Sunday.