SickKids ...part deux

posted on August 14th, 2007 by Chris Betlejemski

Hello everybody. We're sitting here in the living room tonight, listening to John Tesh blathering about obvious nothings on another one of those "EZ Rock" style radio stations. I'm tolerating Celine Dion, Aaron Neville, and Jefferson Starship because we had a great day today... one of the best days in recent history!! Perhaps, the best news day since December 28th!!

Julia had her 3-month check-up at SickKids Hospital in Toronto today. We were pretty nervous about this trip, because we'd be finding out if her ticker (and ticker-related parts) have improved since her big surgery in April.

We arrived in Toronto on Monday night, and stayed over at Marcin & Ania's house. This was a good move, because we got to chill-out a little, and play with the kids. Monika's cousin, Ewelina, is visiting from Poland, and she is pretty hillarious (she explained to me that her boyfriend is "Van Halen").

Anyway, back to the news...

the check-up

The first thing on today's agenda was a lung-profusion scan. Julia had to be strapped-down to a big table, and looked like a little mummy with frilly socks. The technician injected a little bit of radioactive fluid into her foot, and almost immediately, we saw the computer screen light up with little glowy dots... in the shape of 1.5 jelly beans. The x-ray tracks the movement of the radioactive material, particularly when it gets to the lungs. They are able to figure out how much blood is getting to the lungs, and how it is distributed between the two of them.

The first good news for the day is that Julia's lungs are using a total of 100% of the available bloodflow. Normally, the volume is split 50/50 between the lungs, but since one of her's is very tiny, the "good" lung compensates, taking in 75% of the blood, while the "little walnut" gets the remaining 25%. If I lost you, don't worry... this is great news. It means her lung function is abnormal, but working fine!

echocardiograma

Next up was a sedate echocardiogram. Julia has had this done before, and while it's not too scary, we don't like it when she has to take a nap for this kind of stuff. She was given some chloral hydrate, and she was asleep within about 25 minutes.

A familiar face performed the ultrasound, which was nice. The whole process takes about 90 minutes, plus the time it takes to review the findings. When the scan was done, the technicians left to review, while we were delegated the task of waking up the Princess. Julia was having quite a nice nap, and wasn't particularly interested in waking up. We tried talking to her, stroking her hair, rocking her gently, tickling a little. We almost resorted to poking her with a stick, but she woke up at the last moment, with a giant smile on her face!

It should be noted, that of all days, Julia was such a sweety all day... more-so than I've ever seen before. She was full of smiles, cute noises, kisses, slobbers, raspberries, more smiles, and a few toots. I decided I wanted to carry her around all day, and we loved it! She climbed all over me (yes, you read that correctly). When I hold her on my shoulder, she starts to stand, and pulls herself in any direction of interest, leaving me scrambling to keep a grip. She was a real handful, in a good way. We had so much fun!

the bottom line

After the echo, we got to meet with Janette, the cardiac nurse-practitioner. She was really good to us when we were there back in April, so we were glad to be dealing with her again.

So, what did she say?

Julia is doing awesome!!! The big news (from our point of view) is that her ultra-tiny left pulmonary artery has grown to almost the same size as the one on the right... which is to say that they are both considered to be in "normal" range. Her tiny left artery was the root of a LOT of concern. Now that it has grown, we feel a huge amount of relief! Her pressures are still higher than they should be, but FAR less than they were. The enlarged portions of her heart have shrunk down to a reasonable size.

All in all, everything is almost "normal". We love that word :)

one more little victory

In addition to a really positive review of her progress, there is a REALLY good possibility that we will begin weaning-off the oxygen in the coming weeks!!!

Since the day she was born, Julia has had to endure the constant annoyance of having air blown up her nose 24-hours a day. You've seen the terribly irritating tubes constantly taped to her face. She completely loathes those things, and takes every opportunity to scratch, pull, curse, bite, and rub them off. They interrupt her sleep. They get in the way of her moving, playing, having a bath, and (recently) standing up. If there is one thing in the world I'd sell my soul to do, it would be to burn those damned tubes of hers, then pee on the remains.

We're trying to stay patient, but it looks like Julia could be oxygen-free in the near future. This is paramount! Praise the Lord!!

in other news

Aside from all the good stuff today, Julia has a new hobby: swimming. She loves splashing, and chewing on her rubber-ducky. Tate & Larissa gave her a cute little swimsuit & pool robe, so we decided to rig up a "day at the pool" in our backyard. We brought her bathtub onto the deck, and let her go nuts. The pictures on this blog posting are from this particular swim. Look how happy she is!!

As always, thanks so much for reading, and your prolonged interest in the story of our lives :)

Dad

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This is the little web log of the Betlejemski Family: Christopher, Monika, and (our little champ) Julia.