Tuesday, February 24, 2009

Still home

This is so wierd. I still don't think this is RSV. He is not needing suctioning. He's been more snotty with small colds than this. So then why is he still needing 1 liter of oxygen? That could even be heart failure. Oh God, praying thats not what it is. I haven't been able to get him off the 1 liter for 3 days. We may have to do another chest x-ray and see what that shows.

The only thing that makes it sound like a cold is he is coughing. And my doc said he's swallowing a ton of air when he coughs and thats why his belly is big and why he is gagging and wretching. He still didn't sleep last night. I think I'm getting used to no sleep because I'm not even tired anymore.

But look what came in the mail yesterday.

I enlarged it so you can read it.

We always wear matching t-shirts when we go to Disneyland or other parks so we can find each other. We thought why not raise awarness while we are at it. We had these made at cafepress.com. That is a great site. They have down syndrome shirts and autism shirts that we are going to order as well. The other boys shirts say My brother was born with CHD, and ours say son. Isn't it cute?

Oh and also, we just changed feeding pumps. I have 7 bags left over from my other pump. I know there a lot of you that have that pump, and I don't have a lot of bags left. So maybe the first person to message me I will send you the bags. Its a 5oo ml bags for the Zevex Infinity pump. So let me know, I have gathered so much crap that I can't send back and I can't use. Its filling Jax room up.


Junior said...

It is great to hear that you are still home, prayers that Jaxson's oxygen needs will decrease.

Has he ever used the Farrell bags? They are for keeping the tummy vented and can even be used while on a feeding pump. Junior uses them at night when on his cpap because he swallows air.

Junior said...

Lacey, the bags are by Viasys Healthcare and are called Farrell Valve Enteral Gastric Pressure Relief System.

Heather said...

Hoping today that Jax begins to turn a corner.I am sure he has just gotten hit harder by all the junk flying around.His body is so much more prone to it and it is so much more difficult for him to kick it.I love the t-shirts Lacey.Great idea.Praying for a better day for the little sweetie.

Melissa said...

God Lacey, I'm so sorry that he still needs so much oxygen? I'm so anxious to hear what's going on??? Is this really RSV?

THANK YOU SO MUCH for sending Dillon his blanky...YOU ARE TOO MUCH! You should not have done that with everything you have going on! Dillon is going to be so excited!!
I love the TSHIRTS...SO CUTE!
Love & hugs from Dillon & I!!!

jess said...

Praying that Jax feels better soon!! HUGS!

Melissa said...

THANKS LACEY, That is so cool!! I Really Hope that they pick us, I would feel so honored!!!
Love & hugs!

The Hortons...one day at a time. said...

I can totally understand the concern about heart failure! We found out that the last trip to the hospital was a result of him being in heart failure. Its a never ending process.
I LOVE the shirts! I was looking for some online and had trouble finding them. I will have to check that site out!
Still hoping you get some sleep maybe things will settle down and Jax will start to feel better. We will continue to pray and hope that Jax can go down on his oxygen!

blairspage said...

I will continue to pray that he gets better and you can lower his oxygen! I know that has to be frustrating!

LOVE THE T-SHIRTS! What a cute idea!

Hugs - Tiffany

Terri said...

Lacey I love the shirts! He is one lucky guy! Isn't it just amazing how little sleep we can get and still function? I hope things take a turn for the better fast. Poor guy. All that O2 what is going on with him? Oh and I don't blame you for wanting to stay at home. To think that our Ava was really supposed to be in the hospital the whole 7 months....not happeneing here. We always knew just like you the signs to look for. If an ambulance call was needed we knew the number!;) It is so much better in your own home. Praying for JAxson and you all.

"God help this wonderful family get over this sickness. This little man has had one thing after another, Lord. He needs some rest and some better days. We know you are right there holding Jaxson every second. Help Lacey too as this is so hard on us Mom's. We do it because we just do. Give them all the strength to face what lies ahead. In Your name, Amen."

Prayers always!

~Terri and Ava

Conrad, Megan and Our Precious Keaton said...

Hello dear Lacey, Even though we have only met via cyber space and we hardly know each other - I feel like jumping on a plane and coming to give you a big hug! Please know that you and Jaxson continue to be in my prayers and thoughts.... I hope you and Jaxson can get some sleep today and that he starts to feel better! I love the shirts idea, as you know I have a nephew who is 2 and 1/2 who has survived cancer and now has autism - would love to get some t-shirts.... Thanks for the awareness - we have none in South Africa... Okay let me run and I will check in later with you! Keep Strong! Megan and Keaton