Friday, August 13, 2010

Home sweet home!

We're home! Exhausted, but home!
Getting ready to go down for his echo this morning.

Dressed and ready to go.


He's battered...

and bruised...

and pale...

but home. That's were we want to be. Right now we are not concentrating on how much time we may, or may not have. Although some tests will be ordered in the coming weeks. As of his today his echo was beautiful! The two new drugs and vent are helping tremendously! And of course every one's prayers are truly heard.
Last night was utter hell! The vent kept me up all night. He breathes so shallow when he is asleep, that the vent wasn't sensing his breaths. If we turned the sensitivity up, it over-cycled and beeped that he was breathing to fast. If we turned the sensitivity down, it didn't sense breaths at all and beeped apnea. I finally fell asleep for about an hour at 4 am. If the vent does this tonight, we will be going to the trach mask for the night. Right now we have the monster t-bird vent, because he only has it at night. Our RT is trying to get us the LTV. Much smaller and more portable, and he thinks it will be more sensitive.
Its a good thing we came home on a Friday, because we will need all weekend to recover! His room is a disaster as we try to fit even more equipment into it. I'm not kidding this time when I say we may be trading him for the master bedroom! We've added 3 new drugs costing an extra $60 dollars a month to his already huge regimen. I sat on the phone for an hour at the pharmacy, arguing with my insurance about a drug and that his doctor pre-authed it. Pulmonary hypertension meds are outrageously expensive and have to have a doctor get it approved. I'm just glad we got it worked out, we can't wait until Monday to get these meds filled!
Here's our newest addition to the medical machine family. Right now its sitting on Jax Ottoman. We need to go out tomorrow and get a table for it, ideally with more storage under it, as we've run out of that as well in his room.

He's not tolerating bolus feeds right now. We switched his g-tube to a GJ-tube before we came home. The vent gets so much air in his belly. So we will feed him through the j port at night and let the g port vent the air out. Hopefully this will help his distended belly go down, and he can go back to bolus feeds soon.
Tomorrow we are going to go swimming, and Sunday we want to go up in the mountains and see some falls. Just thankful to have my baby home again, after another close call!

25 comments:

Kel said...

I feel ya on the T-Bird, Lib was on that at home at 1 yr old, and she was very active and we were suppose to keep it on her face, Mike and I only got maybe 1 hour of sleep at night, it alarmed every 10 mins literally. I swear half the time it alarms for no reason at all. I will keep you all in my thoughts. Hugs to Jaxson. Stay Positive Strong Lady.

The VW's said...

YAY for home and YAY for a good echo! Praying you are able to sleep well and that Jax continues to do this well or better! Love, Hugs and Prayers!!!

Jessica said...

Holy smokes that is a big vent! Not the cute little purple one. Im glad Jax is home where he belongs.

Alison said...

So glad he is home now!

Praying you get some sleep!

Heather said...

Yeah for home and peace and love coming to you, from all of us in California.


Boy have we been playing phone tag or what??

Colleen said...

I'm so glad he's home although it seems like the first 2 days home are the hardest...calls to the pharmacy, insurance etc. Isaac uses a LTV at night, but he's on a bipap setting. We've never traveled with it, but we could if we had to. I hope you can get some rest tonight!

Skye is the Limit! said...

This post made me really sad. And I was not aware on how serious things were for you guys. I hate to see this, and more machines are never good to see either.
I am so sorry, of course I am extra emotional with that is going on and I wish I didnt have to be so far from you guys, id love to meet ya'll!!

Becky said...

Welcome home sweet baby Jax!

Rochelle said...

We are so happy to hear he is home and you are going to do some fun family stuff! Enjoy!

Anne and Whitney: Up, Down and All Around said...

i am so happy to hear that you are home. i hope you got at least SOME sleep last night and that you, jaxson and the rest of the family can enjoy some time together outside (somehow) this weekend!!!!!!! sorry the insurance stuff sounds like such a nightmare (when is it not???!!!)
yeah for being home!!!

Cammie Heflin said...

So glad you are home! I had a very vivid dream of Jax the other night and he was doing fantastic, I know God is hearing our prayers for your sweet boy!

Tiffany said...

Yeah for home! So glad you have made it home. Sorry about the vent. Our little guy was on an apnea monitor for quite a while after he came home from the NICU and if the apnea is anywhere near what a vent does with alarms I'm sorry and I feel your pain. Hang in there. We will be praying for a better vent that will do the job better.

Hopefully you can now have some time to enjoy some more summer while it is still here and that you will be able to relax a little bit too.

Amy said...

Oh yes.. you need to get the LTV-- it looks more portable then the thing on the ottoman.We have the LTV 1150 - it has internal peep so much beeter than the 950 where you have to dial it in. We came home on the LTV 1150.Good luck and sleep when you can. He is a fighter.

Michelle and Sean said...

I'm so glad you guys made it home!! I totally noticed a big difference with the LTV so I hope you guys can get that one soon. We had the same problem with Maggies resp rate with the sensitivity turned up we ended up just bumping up her resp rate alarm really high and the vent seemed to calm down. I can't remember what we put it at but is was really high for that alarm. Anyway I hope things went well last night and I hope this doesn't end up being just a big huge pain!

ktzmum said...

So happy Jax is home where he belongs with everyone who loves him so much. I pray that you all get some good sleep.

Anonymous said...

sweet baby boy...thank goodness for a mother that will fight for you..God bless.. Susie

Bugg's mama said...

I always say that Friday the 13th's are lucky days.

WELCOME HOME!

To Love Endlessly said...

woot, woot! Awesome to know. You're lil man is a true fighter.

DevonLeah said...

Im so sorry Lacey...prayers for your sweet boy, prayers for a restful night for everyone. Glad he is home!

Junior said...

So happy to hear that you are home. Hug that sweet boy for us.

Lori said...

So glad to hear that you are home! Hope you are able to get the vent working for you so that you do not need to be up all night.
Continued prayers for your little man!

Looking Up said...

Glad that you are home, but my heart just breaks for you. No mom should have to see their little one suffer so. Praying that God gives you strength & peace.

Shelly Turpin said...

Where did they find that vent? Crazy! We have the LTV 1150 on a stand on wheels. I so hope they can get that for you.

I'm glad y'all are home and trying to live again. Hugs!

Kelly said...

Welcome HOME=) (Continued prayers)!!!

Melissa M said...

I'm so far behind on blog reading, but wanted to say YAY!!!! for being home. :)