Monday, February 6, 2012

Day 1

So far, so good.

We are all settled into our room.Jax's weight today was 24.25lbs.  Jax had his "lunch" session with a doctor he has never met. He didn't do well with the session. He screamed, cried and downright sobbed. In total, he had about 2 licks of pudding and 4 small sips of chocolate milk. By dinner time, he was definitely hungry. He kept grabbing his stomach and acting like he was in pain. He even gagged on two occassions.

His dinner session was with a doctor he's known for a long time. This time, Jason and Brady were along to sit with me in the observation room. Jax did great. He took a total of 1 oz of chocolate milk and about .25- .5 oz of strawberry ice cream and purreed pears. That's almost a 1.5oz total. So while that isn't a meal, it is enough to make his blood sugar a little easier for me to handle until bedtime (because it's all about me, right?). The good part of this session was that Jax didn't have a meltdown. It could've been because he is more comfortable with this doctor, or that he was actually hungry, or a mix of both. His breakfast session (8:30am) will be with the doctor he knows, and he should definitely be hungry, so we'll see what he can do.

I think they'll give him some Pedialyte through the tube while he sleeps to stay hydrated. I know that they'll wake him by 7am each morning to get his weight, vitals and do blood work (finger pick) to make sure he's ok physically. His meal times are 8:30am, 12:30pm, 4:30pm and he can have nothing other than water in-between.

It just so happens that my nifty little lap top has a slot for my camera's memory card (YAY!) so here are many promised photos:

This was the lovely diaper cream on the wool rug situation last week.

The boys enjoying the boxes that Jax's monthly medical supply orders come in. I'll never understand the facination of boxes.

Jax was tackling Brady and LICKING him. Um, yeah kids are weird.

Sometimes they are nice to each other.

This morning before leaving for the hospital. Jax has his backpack on for the last time for quite awhile and I'm sportin' my support with an I LOVE A TUBIE sweatshirt.

This was the paperwork I had to fill out by 4:30 today. That was neat.

Tubie Friends made Jax his own special bear with a G-Tube. He's adorable!

Here are photos of the monitor during Jax's first feeding session. Here he is sobbing into his hands and the doctor is ignoring and reading a magazine.

The struggle continues.

And continues...

Then he was turned to the wall until he stopped sobbing.

Brady came to play

Dinner time was better.

Here's a shot of the set up. Jax is behind the double way glass, and you can see the monitor recording.
**And for those who have asked, we are in room W1124 at Childrens Hospital of Wisconsin**


Kimberly said...

I have been thinking about you guys today. Sending lots of love your way!

michelle said...

Just wanted to say I was thinking of you all today! Looking forward to reading the daily reports. Best wishes!

Matt & Shana said...

Good luck! We are pulling for you guys over here!! Keep the pictures and updates coming!

Wiley said...

I'm distracted by the fact that you look fantastic in the sweatshirt!