Yep, you heard that right, we should be able to go home tomorrow. We do our rooming in tonight, our trach CPR class tomorrow, then we are free to go.
He's been having a rough day and a half though. Yesterday he didnt tolerate bolus feeds, so we tried slowing it down a little, and he still didn't. So we are back to continous feeds. Thats ok, his gut is very picky, and it will probably take a long time to slowly transition him back. He also was extremely fussy last night and this morning. His heartrate was in the 170's, normal being 120's. He would gag and wretch, so I would vent him and get 50 cc's of air. We think he's feeling back to normal and now realizing he is breathing different. You can see him swallowing air. Hopefully he learns how to stop that, otherwise we could be venting him multiple times a day to get air out. The attending was worried that he was catching something, so he sent a VRP, but like I thought, it was negative. Its just stuff he'll have to adjust too. We are working on getting him in on appointment to get the H1N1 vaccine. No one but the health dept has them. I don't want to take him to wait in line around tons of people to get it, so we'll see if they accomidate him.
1 month ago
22 comments:
Oh I'm so excited for you to finally be getting out of there.
Hopefully things will get moving a little better through his GI tract soon so he can tolerate his feeds.
You're always so on top of keeping Jax comfortable and happy.
I'm sure he'll adjust soon, he's a tough one.
Yay for home! Good luck with your rooming in and CPR class. My friend went to the Sandy Health Dept clinic yesterday to get her daughter a H1N1 shot and she said there was no line - just walked in and out and simple as that. I am still debating about Carter - don't know what to do.
I hope you get home tomorrow! That would be wonderful! Get outta there Jax!
Praying you get out of there tomorrow! Come on Jaxson!
Yeah! Happy almost homecoming!
We had to take Parker all the way up to Tooele today to get his first H1N1. Utah county is out until next week.
Totally nuts!
They had the waiting lines outside, but let us inside before the main crush made it inside the building.
It really is a ridiculous way to do this if you ask me. Medically fragile kids should be able to have easier access.
It's two shots. So three weeks from now we'll be doing it again. ahhhh!
Have your other kids received the H1N1 mist yet?
I am so glad you are soon to be home bound. I am sad I wasn't able to make a visit. I will come visit at home soon. I hope he stays healthy. I am in debates over the H1N1 shot for Justin myself.
Great news! Dr. Durham told us too, to go to a health clinic to get the H1N1 vaccination. I told him we'd catch something worse! Steve went and waited in line for over 2 hours.
that is great news to be able to be going home...Hoping the transition will be easier for him at home since it will be familiar surroundings for him and all of you...Hoping you are able to get the H1N1 also soon...we are on a waiting list at our ped and hoping to get it next week...still sending thoughts and prayers your way...What a little strong guy you have! He is a hero to so many! and so are you and your family!
Fingers crossed that tomorrow is the day!
Lacey so good to hear you will be going home possibly tomorrow.
Has Jax every tried the farrell bags for venting. They can be hooked up to vent even during feeds. Junior uses them anytime he is on a feed or bipap. If you want to try them send your addy to my private email and I will ship you a box.
Hope you get to take Jax home as planned. You are really amazing, Jax is lucky to have you as his mom, just reading about all the things you have to learn and understand is mind boggling. Keeping Jax in my prayers. Hope things settle down and everything goes well!
So wonderful to talk last night.Wish so much we were closer in distance.Praying that you are home tomorrow and sending you lots of love as always.
YEAH!!!! We sooooo hope you get to go home tomorrow. I know it is nowhere near the same, but Big Chris uses a CPAP for sleep apnea @ night. He was having serious trouble with air getting into his stomach. He would wake up looking like he was preg! The other thing is, to me, it looks like some of the swelling has started to go down around Jaxson face. He looks so good to me from the pics. BUT all of that fluid in those cells has to drain somewhere. He will probably just have to get used to the new normal.. you know our kiddos can only do one thing at a time. ;)
Christopher had his first H1N1 shot today. We had a hard time with it because he has no muscle....they finally did give it in his leg. We have to go back for the 2nd one in 4 weeks. Our ped confirmed that the hospital we were in over the weekend was FULL of H1N1. The overflow was coming to their hospital, and there were at least 4 schools closed completely in Chicago today. :(
Way to go Jaxson! Hope you get home sooooooon!
Big hugs!
Steph and Christopher
So grateful to hear that little Jax is coming home! Thats wonderful news Lacey! Jaxson really is a little champ! Hope you can get accommodated for the vaccine when and how you want it! God bless!
That's great that you are getting ready to leave the hospital. I am so excited for you. So glad that everything worked out. Yah Jaxson!!!!!!
Yay for home!!! I pray that this transition goes well and that Jax starts doing better with his feeds and the extra air issue! One step at a time.....HUGS!!!
GO JAXSON, GO JAXSON, GO JAXSON!!!!
I am so proud of you little buddy!!!!
I love you very much and I think about and pray for your every single day!!!
xoxoxoxoxoxo
<3
p.s. Lacey how have you been feeling lately??? How are the boys doing in school??
That is great that you may be home so soon! I hope he figures out how to work the breathing thing out. It's no fun having that much air in the gut. I know when I can vent that much air out of Peanut that she is really uncomfortable.
Good luck with the rooming in tonite, I hope it all goes well!
They should be brining that vaccine to you home for crying out loud!! We are hopefully getting out this morning as well. I don't know how you do it being in the hospital so much. This is our first and it's only been 3 1/2 days and I am losing it. :-) Glad things are going well andt hat you understand all the trach stuff, sounds so complicated to me.
So glad you might get to go home tomorrow. I love reading your blog and can relate on more levels than I really care to think about. my son is on continuous J feeds and is a major air swallower. I vent him whenever I change his diaper, or if he gets uncomfortable before that. It is just all the more reason not to ever let them cry! Between the air and the secretions I have one spoiled baby on my hands (and that is totally ok). Best wishes on a happy, healthy, homecoming.
We're thinking of you and keeping you all in our prayers. We'll pray that your little goldfish out of water stops his air gulping habit and continues to adjust to his new equipment.
"Just keep swimming...just keep swimming..."
wow - that is so fast. in, out, and on your way. I am impressed, shocked, awed. Great!
I hope he adjusts to the trach soon. Poor sweet little man.
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