Tuesday, September 13, 2011

Home sweet home

Tonight my baby sleeps in his own bed.

His favorite mobile that has been singing to him since birth lulls him right to sleep.

This boy never ceases to amaze me. Sunday evening they started peptiman jr. A pre-digested formula, in hopes that we could get his gut to accept food. After we got to 15 mls, the wretching, crazy heart rate, started up again. I told the attending that came on Monday, that I wasn't holding my breath that pushing his gut was going to make it work! Yesterday, she promised that if by today, he wasn't any farther, we'd call his GI and get her opinion. They went super slow, only upping every 6 hours. To 20, he did ok. This morning I called, he'd gotten up to 25, and was still ok! I couldn't believe it, we were going to be able to go home! His heartrate is still higher than normal, and the teeth grinding is severe, so he's still uncomfortable, but he's getting food!
His eyes are a bit more perky.

His calcium has been super low, so has his potassium, so his gut is still being weird. He has DiGeorge anomolies, and one of those is hypocalciumia, so he has chronically low calcium. He gets 600 mgs of calcium a day, and that keeps it on the low end of normal. Right now he is on 1000 mgs a day to keep it there. We'll be checking that frequently, to try and prevent what happened last time he was on huge doses. He'd been in the hospital for almost a month with feeding problems. Once home, his calcium jumped way up, putting us back in for 3 days to flush it out of his system. That was one of my first posts on this blog!

Let me out!

Probably our last wagon ride out in this hospital.

As usual, he came home battered and bruised. 9 days of constant tries for access. They got pretty creative this time. See that bruise on his finger? Yep, they got an IV there.

Both feet were good places this time. His ankle is bruised from a failed attempt, and then they got one almost on the bottom of his other foot!

I'm not sure how long he'll be on this formula, they would like to get him back to normal formula. My biggest concern is going back to feeding in his tummy. With this big aspiration, and knowing his nissen is not working well, I'm not willing to do it. I plan on talking to our GI tomorrow, and seeing what she says. My guess is we'll have to bring it up to a new surgeon in California, since we move in about two weeks.

I think after every hospital stay, my love for this boy gets stronger and stronger. I feel like I'm in the presence of a real life angel. How did I get so lucky?
His little, 25lb, 5 year old body endures so much. How in the world does it keep working? Two weeks after a 24 hour stomach bug, he is finally tolerating very slow feeds into his gut, still not into his tummy.
Rarely does this warrior fuss. I don't think he cried at all in the last 9 days. I can't even count the IV pokes and blood draws, or how his tummy must have been screaming when not tolerating feeds. The only way I know he is hurting is the sound of his grinding teeth.
He is a truly amazing little boy!

*So sorry to those that have emailed or commented offering help. I'm really not ignoring you, I just haven't had a second to respond. Although I do admit I have a hard time letting people help me. I guess I just feel like I'm putting people out.


Jeana said...

So glad he is home where he belongs! Don't feel like you are putting people out by them helping you, its what we are all here for, to help each other get through. Yeah easier said than done I know, I have the same problem :) How you had a little one in the hospital and took care of all you other children while your husband lives in another state amazes me. You are amazing!

Zoey's mom, Heather said...

Welcome home sweet boy and to you Lacey, you amaze me. I continue to be so proud of all of you as you endure all the change and the uncertainty right now but you all embrace it and move through it with such grace.

I love all the pictures of him. He is an angel. Absolutely no doubt about that.

Alison said...

So glad he is home!!!

Tia said...

So pleased he's home again. My daughter's been on Peptamin Jnr for a few yeas now; it's been brilliant for her. She does have to have it half strength these days as she can't tolerate the full version but it's so much easier on her system than some of the other feeds she's tried.

I hope J decides he's given you enough excitement for the next wee while and that you can now relax(?) and concentrate on the move.

The VW's said...

I just LOVE your boy! So happy he is home where he belongs! And, like his shirt says, What a trooper!!!

I can't believe he didn't cry at all! He needs to have a talk with Gavin, because a couple days ago I took him for a blood draw, and the boy started complaining before they even touched him.....he's so dramatic.....just like his brothers are! :)

Hope Jax continues to improve and feel better! Love, Hugs and Prayers!!!

April said...


Kristin said...

So glad he's home!

Anonymous said...

Glad he's on the mend

Carolyn said...

So happy he is home!! I can't believe he didn't cry with all those pokes! What a strong boy!! Love all the pictures!!

Anonymous said...

I'm so glad he is home!! What a relief. I hope everything settles down with his gut soon.

I don't let people help me either, even my own husband, I resist and resist... but really help is okay, let people help even if you do it just for them.


Colleen said...

YAY! There's no place like home!:)

Shelly Turpin said...

I am so glad he is home. So glad he is out of the hospital and away from needles. Bella is on Peptamen Jr Prebio

Michelle said...

so happy to read that he is home! Prayers for his continued recovery!

Anonymous said...

Ok, so I have been trying to think of the least rude way to say this, but I am curious why he still wears onesies? I know he is 5, and I have just been curious to why he wears them. My best guess was with his medical equiptment and his other needs, it was the most accesible method. I am so happy he is home again! You got to love your little trooper :)

Anonymous said...

Dear Jax, i don't even know you but I just love you :) you are a special little boy.

Lacey said...

Im not sure if you'll see this anonymous, but your question made me laugh a bit. I've never really thought about onesies as an age thing, although of course my other boys dont wear them. In the summer, and in the hospital, onesies are great because they keep him cool, and are accessible in the hospital. I do have tank top onesies that I put under his clothes in the summer, because he is a g tube grabber. He can get that shirt up and the tube out in seconds, so it has to stay covered. i dont think he has any regular clothes that are onesies, just undershirts or jammies. If we are having a lazy day and dont get dressed, or he's sick, you'll see more onesies, which is why lately he's been in them more.
Another thing, i think I forget how old he really is. He still wears 24 month clothes, he weighs 23 lbs. Definitely not the size of a 5 year old. And since he doesnt sit up or walk, or even communicate, it makes him seem younger.
So is there some age limit that onesies aren't "cool" anymore? Just curious ;)

Melissa said...

So glad you made it home! I hope you get some answers from GI.

Christy said...

Welcome home little man.
Love the onesies. My Josh is almost 5 and he has a onsie on at ALL times because if I take it off he gets in his diaper and poop ends up all over my house. Therefore he will be sporting the onesie the rest of his life ;) Unfortunately they only go up to 24 months so I guess I'll have to start sewing them by hand - ha ha! And as for the help - you would seriously be doing us the favor. Help wouldn't be offered if it wasn't sincere!!!!

Lacey said...

Christy, I do believe you are sincere. And I think before we move, I will invite anyone that wants to come and say goodbye, and perhaps meet for the first time.
And I wanted to tell you, essentialwhites.com is a website that a lot of special needs moms love! Its where I get his tank top onesies, and I believe they go up to a 6t! Check it out!