Thursday, October 22, 2009

Hault, about face

Isn't it so true that our kids take one step forward and about 10 steps backwards, making it imposible to get ahead?
We are not going home today. I am hopefull that we can tomorrow, but he had a horrible night. I feel so bad for daddy, he seems to always be the one here when something happens. Last night around 2 in the morning, daddy was suctioning him, and his sats started dropping. Then they wouldn't come back up. The nurse came in and he continued to drop, to around 20. Another nurse came running and they bagged him. They almost called a code, but were able to bring him up on their own. He is also not tolerating feeds still. I had a great suggestion though. Switch him to a GJ tube, let his g port vent, and feed him through the j port, so his stomach is always venting. Hopefully before too long he'll get used to the trach and stop swallowing so much air. That is the plan, they thought my idea was brilliant, I told them they would be getting my bill, and I charge a LOT for my services.
They are still watching him for those episodes, I think he just got pissed, they didn't give him a break to bring his sats up a little, and he got passed that point of no return. The point when they need help to bring their sats back up.
So I'm praying we get the gj tube in today and home tomorrow, I'm not telling Jax though, he will throw another curveball if I do. I also think I'm going to go home to sleep tonight. He's been having such hard nights, that if we stay here we don't sleep. Me and daddy are both zombies right now. So we need to sleep if we are going to bring him home tomorrow and get all of his new equipment set up. Being a trach he is a one -to -one, so someone is always sitting outside his door. The tech that will be here tonight is one of my good friends, and she loves Jax. I feel confident that she will hold him if he cries, and take great care of him.

Oh and the H1N1, we do have to wait, but he did tell me we could get him in the back door if we let them know he can't be around everyone. It makes me crazy that they aren't caring about our medically fragile kids. I'm not freaking out about the virus, but I do want him to have the vaccine. I have now heard that the healthy people are being more affected because their strong immune systems are fighting it harder. The reason why its so rampant is because its new and no one has been exposed so everyone is catching it. I am just concerned about any virus with him, so we'll do all we can.

18 comments:

ANewKindOfPerfect said...

I'm sorry to hear that Jax had a rough night, poor Daddy must have been scared! I think the gj-tube is a great idea. Sometimes we Moms are more clued in than the doctors.

I hope you still manage to get home sometime soon!

stephanie said...

Lacey you amaze me,you saved the day with your suggestion. Praying Jax is home tomorrow. get some rest. Take advantage of your friend being on, Jax is in good hands.

Emily said...

You deserve the Mommy of the year award. I do hope that you all get the sleep you need to prepare for his homecoming. I pray that he is able to have a good night as well.

Heather said...

Well that little stinker! And,you ,yes,I would definitely bill them1You are after all the mom and therefore the expert.Get some rest ...PLEASE!Praying home is around the corner.Love to you all.

The VW's said...

Jax has a VERY smart Momma! Great thinking Lacey! They should definitely give you a discount or something for doing some of their work!

I pray that Jax does better tonight and that all of you get a good night's rest!

LOVE, HUGS and PRAYERS!!!

Team Carter Jay said...

Sorry to hear about the rough night. I'm sure that tonight will be much better. Still praying!

Sasha said...

Oh..hang in there. Wysdom has that same problem about one step forward and several back. He always get's complications. Yah sleep for you sounds good as you need to be prepared for when he gets home. Why do you have to wait for the h1n1 shot? I thought our little ones would get it first.
Sending you hugs and strength!!!

Becky said...

Lacey, when Ben was on the floor before going to the PICU, he had a really GREAT one on one...he was an older man (small build) with CP. He was amazing and just LOVED Ben as well as all the trach kids that he works with. I can't remember his name, but was wondering if you knew him and if so...could you PLEASE tell him that we said hello? Thanks and hope you get to go home SOON! Funny how we were both supposed to go home today and didn't. UGH!

Cammie Heflin said...

Oh Jaxon, little man I was so hoping I would see you at home today! Hopefully tonight will be better and you can get your new button and eat better! Love you guys!

Alison said...

Sorry to hear he had a bad night - I hope tonight is better and that you get to come home tomorrow.

Kim said...

Praying for a restful night for everyone. Sounds like a very stressful and scary night. I hope he gets to go home soon!

Kim Rees said...

Still thinking about ya, and still praying for ya! I'm glad you are going home to get some rest. You are right, you guys are definitely going to need it. Will pray that if tomorrow is the day then all will go well! God Bless You!

Evie's Story said...

Come on Jax! We cant wait to hear you are outta there and home with those who love you! Lacey....pray you are holding up okay. Know how draining these hospital stays are! Bless his heart - and YOURS!

jjpsmommy07 said...

sorry to read that Jax had a rough night. Keeping him and all of you in our prayers and I hope he gets to go home soon.

Tausha said...

Wow, what a rough night, how scarey. Please go home and get some sleep, your body needs it. You are in our prayers.

ParkerMama said...

Oy! What a few more gray hairs,eh? Jax'll catch on. It is a bit of a hard transistion.

Parker pulled the damn trach out the night of his surgery. They had to do an emergency call to the ENT residents to get it back in.

And to this day Parker still loves to pull his out. :D

Where did you call that they told you you could go in through the back door for the H1N1?

ANewKindOfPerfect said...

Hi Lacey, the stoma does not leak urine. A regular vesicostomy is constantly dripping, an appendicovesicostomy is not. It creates a cathing stoma, so you have to insert a catheter to get the urine out. So far, so good! :)

Michelle said...

I'm so sorry to hear he had such a rough night. Hope the switch to the gj tube does the trick and he can go home tomorrow!