Tuesday, April 13, 2010

Is This The Beginning of the End: A Penny Medical Update

Last week Penny was at MGH for various swallow studies and other aspiration studies. Because I am pregnant I had to stand in the other room when they did the films but I think she did better without me - Penny is such a people pleaser that she was laughing and pointing to stickers and drinking when instructed. All in all I was told she was the best kid they've ever had (I bet they say that to all the moms). She did flip out when they put the tube down her nose (to make sure that there is no holes between her esophagus and her lungs) but they told me that adults do too. The fluid in her lungs was gone and they said all tests were "negative" (ie, normal).


The tests did show that Penny "holds back" liquid in her mouth, it takes 2 swallows to clear and that she does not "continuously swallow" (think of how you gulp water when you are thirst - she takes "breaks"). Apparently this is very common with reflux kids - a protective mechanism they develop. It does not cause aspiration. It was pretty cool watching the liquid go down on the X-ray monitor.


Yesterday Penny spent the day at my work daycare and we had an appointment with her pulmonologist in the afternoon to discuss the test results. After Penny took everything out of my wallet twice and went over to waive at each person individually in the waiting room, we got to see her pulmonologist.


He kept remarking how big she was and how grown up (she weighed in at 21 lbs and is 30.5 inches tall for the record). Originally he was going to suggest we go forward with the CT and lung biopsy to confirm what sort of interstial lung disease she might have (some are treatable with steroids and a few other options) - and to get it all done fast-track before I had the baby. Instead he decided we should see at home if she is any better without the O2. She seemed "so great" developmentally and size-wise that he was wondering if maybe she's grown out of it.


We were instructed to record her desaturations in a journal and check occasionally to see what her level was running at on the monitor. If the desaturations were frequent she'd move straight through to the CT and the lung biopsy and if it was ambiguous we'd come in for an overnight sleep study.


We put the monitor in the hallway so it wouldn't disturb either kid's sleep (it is set to alarm at 88%). It NEVER WENT OFF. In fact, we checked periodically until 2:00 am and she was running at 97% the whole time.


Of course we thought this before (God, was that really last NOVEMBER?) but she went back on the O2 a couple of weeks later. I spoke with her pulmonologist this morning and he was very excited. He would have been happy with mid-90s and thinks 97% is "very reassuring". He wants us to keep the O2 etc on hand and use the monitor again if she gets a cold but otherwise Penny doesn't have to wear the monitor.


We have kicked the failure to thrive (she eats more than Ned!), her reflux is under control (but she still clearly needs her meds), and the O2 saga may be over. Next up is her "allergies" - I don't think that will be done before Spyder arrives but it is nice to see how far Penny has come in the last year.


P.S. Isn't it weird how we call doctors "Dr. So and So" even though they could be our age (and younger)? Her pulmonologist is great and I could actually see us being friends except it is odd with me calling him "Dr." all the time, after all, he calls me by my first name.

19 comments:

LauraC said...

GREAT NEWS!!! Yay Penny!

Goddess in Progress said...

Three cheers for Penny! That is such excellent news.

A. said...

So happy for you guys!! I'll keep my fingers crossed that this time, the O2 is gone for good.

Abby said...

That is great news, I am so glad for you guys. And you MUST be a lawyer since you (inadvertently, I'm sure!) said that Penny "waives!" :) That gave me a chuckle. Anyway, hooray for Penny and the whole Esq. family!

Nancy said...

WOOT!!! Gooooo Penny! That rocks :)

T. said...

Yay! That is great news!

jerseygirl77 said...

That's awesome news! I'm so glad everything seems to be on the up and up! She was such a doll this weekend... and Ned too. :-)

P.S. Odd that the doctors call you by your first name. My kids' docs call me Mrs. Rose... only the one ped who is my friend's FIL calls me by first name.

ElizabethEK said...

Wonderful news!

LER said...

Yea - great news!!! Hope it's all forward from here on out. P is gaining on my little one....at almost 3.5 we are still yet to break 30 lbs...hovering around 27/28....hey, it makes it easier on the arms right!! Seriously - great news on the medical front!

Amy said...

Great news! It's always such a relief when medical issues improve!

Leigh said...

Goodness, she's cute!

And yayy Penny - she is on the up and up.

So glad for all of you.

Our old paed was YOUNG - I seriously thought she was about 22 until I learned that she was married and had a child, etc... - she used to say, "it's Judy" and I'd say, "hi Dr Rothberg" LOL

I can't call doctors on their first names - I have a thing... (I have issues)

Current paed doesn't phone us but I'm sure he's a "it's Dr S here" kind of guy.

Don't think I've ever heard him address us, he goes straight to the babies.

anitajd said...

What a good read! So happy for Penny (and you)!

Momma said...

Great news! I'm praying this is the beginning of the end for Penny!

Jen said...

Oh wow, this is fantastic!

Gretchen said...

That's such great news and good progress. Thinking good thoughts!

jungletwins said...

Holy moly, she has gotten big! So awesome. Keep up the good work, Esq fam.

Jane said...

This is super wonderful news!

Liz said...

That is so amazing! I was thinking in all of the Easter posts that she was looking so big and healthy. Congrats, such nice timing too, on less thing to think about in your soon to be sleep deprived state.

Drew said...

I am so, so, excited for you guys! I can't wait to see how big they have both gotten, and to meet #3 this summer!