Rolie Polie Olie!

Things are getting a little better trach and respiratory-wise around here. Tobi has been our life saver! I think Tobi is going to be a new part of our daily regimen. The only bad thing about Tobi is its the longest neb I've ever done! Which takes a lot of time out of the day because I can't plop it on him, I have to sit and hold it because he can't sit upright. The other thing is it has to be refrigerated so its a cold neb and Jax hates it! He doesn't cry, but the kid never cries, he just squirms like crazy to try and get it off! I'm grateful that we found something that works (for the most part) after oral steroids, nebs and nasal sprays did nothing. He still sounds horrible though, and I can't figure it out because he's not sick. We may be paying pulmo another visit to check things out! The one thing the Tobi has helped the most is his saturations. He is back to baseline, which is I can take his oxygen off to put him in the tub (about 10 minutes) and he keeps his sats up. The last couple of weeks he just plummets seconds after his oxygen comes off.
We are all anxious to know what his pulmonary pressures are since the trach was put in as well. But unless my ped can move our date up we won't know until July! Thats the first time we could get an echo scheduled.

When talking to my ped we also talked about Jax health as he's grown. We were both pretty bummed to realize he's actually on more oxygen now than at birth!

At birth, before a major heart repair, he was only on 1/16 -1/8 of a liter. Thats barely a wiff. But we didn't want his sats too high to prevent major shunting of blood through the heart. But man when you took his oxygen off he dropped to 60 in seconds, it was crazy stuff!

After his heart repair and 4 months on the ventilator, he came home on 1/2 -3/4 of a liter, pretty good considering what he'd been through! Over the next year though we were able to wean him back down to 1/8, and we could even take him off for a few hours a day and he would keep his sats up. Then it was after the next horrific hospital stay were we almost lost him for a second time! They were unable to ventilate him but instead of putting him on the oscillator and saving lung tissue they were shoving pressures (peeps) of 15 down his little lungs! Thats as high as the vent goes! But even then he came home on 1/4 of a liter ( we are slowly trending up again)

Of course when we got closer to needing to trach him he was on ungodly amounts of oxygen. 1 1/2 during the day and almost 5 at night! You can't even accurately do 5 liters on a nasal cannula, we had to put a mask on him!

Anyway, I'm babbling! But now he is on 1/2 liters during the day, the most he's been at as a baseline. Thats not great news. He should be getting better as he gets older and stronger.

But the boy is a rolling machine! Its now getting kind of annoying because we are constantly rolling him back over. He gets to his belly and then gets stuck! And with no head control its not comfy being on your belly!

You end up with your face smashed into the carpet!

If your sick of adoption talk I'm sorry! But I'm excited to say that we just had another big item donated to us to raise money. I'm not going to say what it is yet, but we are going to give it away by drawing names from people that donate to our adoption. Like $10 dollars for one or $25 for three entries! It will be something that you'll want for a Christmas present (or for yourself!)

And the auction is going great, make sure to check back often so you don't get outbid!