Splashing into Summer

It's been a hot Memorial Day Weekend so Daniel and Sofia tried out the baby pool together. Despite Daniel's serious face in the pictures, he loved it, and Sofia splashed and splashed. It's much easier to enjoy the pool this year without the ventilator, etc. We plan on another dip today.

Clap Clap

Sofia loves to clap when you ask her to or she sees someone clapping. Here she is.

We're gearing up now for the big day on Thursday. Things have been a bit more stable nursing-wise even though Daddy and Mommy are both a bit sick (probably the same bug the kids have had for a while and are still getting runny noses from).

Scoping

Sofia was a good girl today and recovered very quickly from her scoping.

The results were inconclusive. The airway looks like it has stayed open but there's some soft tissue / inflammation in there. It might be because of her cold or it might be something that needs to be corrected surgically. We are going back next Thurs to look again and they may operate then, if so she'll have to stay overnight (at least).

Kids recovering

Still not 100% with some runny noses but generally improving and grandma and one of the nurses has come down with the same virus.

Sofia's scoping has been moved to next Wed so that's the big day now!

Sick kids

Both kids have some kind of virus which has made this tough week even tougher. Daniel had a really bad day yesterday, crying and in obvious distress with a runny nose and sniffles. He seems to be doing better today. Sofia had some symptoms days ago and appears to be hitting the worst bit now. She's had some rough evenings and mornings where she can't stop coughing but mostly her days are pretty good. She seems to have a more drawn out version of what Daniel had.

We're hoping she's well enough to have her scoping tomorrow on schedule.

Even Tougher Morning

Earlier today Sofia had trouble breathing and started to turn blue. We tried to bag her but it wasn't working so we changed the trach and that did the trick. It took a while longer so we called 911 but by the time they showed up she was fine.

We called the Dr and went in quickly to see him. Basically the theory is that somehow the trach got displaced or twisted such that it was blocking her airway. There's not much for us to understand how that happened (she was standing beforehand and that's all we really know). So we need to keep watching her as before.

Also the Dr took a look at her cut which bled yesterday and her g-tube site both of which are looking better.

One plus of seeing the Dr today was that we can post up the pictures we have from her last surgery that show her progress. You can see that her airway was still very inflammed and tight but it was open (and is now hopefully more so).



The top picture here shows the stent before it was removed looking top down from her throat. You can see how it was formerly holding open the epiglottis and vocal chords. The bottom shows her airway after the stent is removed.



Here's another shot of her airway. The white bit at the bottom isn't her trach but a bit of tissue that has grown in due to the irritation of her trach.



The top shot here shows her epiglottis and the bottom her vocal chords closed.

Tough morning

So we were without a nurse yet again this morning. Sofia was doing fine until she had a coughing fit then Mommy noticed that there was some blood coming from her incision. It wasn't that much but it was in the middle of her physical therapy so we had to stop and change the trach. We called the Dr who basically said that some bleeding would be normal so we are putting some bacitracin and some gauze on it so it can heal up. We also are getting more antibiotics for her just in case.

Right after that though she was happy and here she is trying to chew on her crib.

Coughing

Sofia has been coughing a lot and has a runny nose so we checked with the Dr. He said that some amount of coughing is normal but that she shouldn't have a runny nose. So we'll probably be continuing antibiotics. She's trying to be happy but she's definitely in some pain/discomfort. This all added up to a rougher evening and night yesterday than normal so we had to give her some more pain meds.

We also had no nurse yesterday evening and this morning so Mommy and Daddy are on duty.

Doing well after surgery

Sofia had her second surgery yesterday where they removed the stent from her throat and checked to see how well the repair went. The surgeon was optimistic about how things looked. He also showed us some pictures taken laryngoscopically.

For the first time there is an open airway. There's definitely swelling and some tissue growth that he made need to remove later. But, overall, he's happy with the progress and will take another look in a week. We're all hoping her airway will stay open on its own now.

Sofia was very upset and cranky before and after the surgery but she cheered up on the way home and was pretty much back to her normal self yesterday. This was pretty surprising because previously things have been pretty rough post-surgery.

Here she is playing with Daniel yesterday afternoon. They were both watching Ni-Hao Kai-Lan.

Getting Strong Now!

Bubbles!

Daddy bought a bubble gun and both kids had lots of fun chasing the bubbles. Here's Sofia smiling as Mommy makes lots of bubbles!

Modeling my new backpack

Sofia has a new feeding pump that is much smaller than before and it fits in a cute little backpack. Here she is trying it out for the first time.

Also her second surgery has been scheduled for 5/14. This one should be relatively straightforward as the plan is to remove the stent only. Hopefully when that is done the airway will look good and we'll see from there what the next step is.

Sandbox!

We acquired another fun summer item - a sandbox! Daniel tried it out today in the hot weather we had.



In other news, Sofia has learned how to pull herself up to stand up in the crib...even while not feeling quite herself after the surgery.

Daniel has also learned his basic colors - red, green, blue, orange, yellow and purple. If we sing a different song for each color, he will pick out the correct ball from the ballpit that matches!