Sunday, August 8, 2010

PICU day 3

I'm a little freaked out right now! Jax is fine, he's back off the vent tonight. He still has a ton of extra fluid, he is huge!! I called my pulmo today to tell her what was going on. She freaked when she found out he was in right heart failure. She is going to come by on Tuesday when she's up there, but she wants him set up with a vent at home for nights. I don't like this one bit. I feel like his health is declining in front of my eyes! We still haven't gotten that stool test back yet, so we don't know for sure which direction we were going. One reason I don't want the vent is I'm afraid he won't go to the PICU when he needs to. We have a trach vent pod in the hospital for kids that don't need to be in PICU but are on vents at home. So I'm afraid they'll stick him on that pod even if he's really sick because he's on a vent at home. And I guess I don't want to have a vented kid.
My ped is trying to tell me to slow down, but its so hard. She is also asking me if now is a good time to go out of the country to get the baby. I knew she would say that. Jax will do this every time we try to travel, so it doesn't matter when we go. It actually makes me want to hurry and get her home. Although I am nervous to leave Jax.
Oh what to do!
There is a baby behind all those machines!




36 comments:

Skye is the Limit! said...

oh my lord!! what happened?! i just realized all of this?

mom26kids said...

Oh Lacey! I feel so bad all of this is happening I hope you get the answers you need quick. It must be so hard not knowing what to do. I am still praying for you.

Kelly said...

Praying for quick answers!! Hug that sweet boy of yours for us!!

Michelle and Sean said...

I'm so sorry that he is not doing so much better!

I can tell you from experience with the vent and the L pod (trach vent unit) That they almost always will try to start Maggie in the PICU or will transfer her from L pod to PICU if she is not doing well. They are super careful and sometimes to me a little too careful. So hopefully you don't have a problem with that. Its also one to one on L pod so thats why there are a lot of times that I think that she would be better on L pod but they transfer her to PICU anyway. I don't know if this helps or not. Tjis has been one of the only things I actually kind of like at that hospital. Although on that pod you have the palmer team and there is a doctor that you will need to set straight right from the beginning. Anyway I can tell you more about him if you end up ever going there. Just email me.

We are truly sorry that this is happening to sweet little Jax and right when you need to get your little girl. We have just had to let one of our nurses go so now we don't have as much (its hard to find good nurses) but really when you go if whoever is watching Jaxson needs some help I would do whatever I can to help. Just let me know.

We are praying things will get better and will all work out for Jaxson and your family!

Suzie and Lily said...

Oh Lacey I am so very sorry you have to go through this. I admire your strength as you go through this. I have a feeling you are crumbling a little on the inside but you hold it together on the outside. You deal with it, you do because you have to for Jaxson. What courage you have. What lessons you teach so many others. I wish you lots and lots of peace and clarity as you make your choices about Jaxson and Mykayla. They both need you and I know you will make the decision that is right for your family.
There are lots of people here that will help you with whatever you decide. Just ask, I am much closer to you now and I can run errands or even just bring you a diet coke and chocolate!
Praying, wishing, and hoping for you.

Cathy said...

Prayers and more prayers for your sweet boy!!

Melissa M said...

Oh Lacey, I haven't been on the computer in a couple of days so I'm just getting updated on Jax now. I will keep him in my prayers!

ANewKindOfPerfect said...

Lacey I am so sorry ... those pictures break my heart! It is good to see Jax little wide eyes open though. I hope that he gets to go home soon, vent or not. I can't even IMAGINE how scary it must be to thinking about leaving the country, even though it's for such an amazing reason. That was the number one reason Alex won't consider an international adoption - he worries too much about leaving Emily for any length of time.

Hang in there. I wish I could come bring you lunch or a hug or something!

Junior said...

Praying for Jax and your family. Big hugs

Shari said...

My heart breaks for you as you have to watch your baby so sick Lacey! I am praying the Lord heals his little body quickly! It can happen Dear! Hang in there.

Shari said...

My heart breaks for you as you have to watch your baby so sick Lacey! I am praying the Lord heals his little body quickly! It can happen Dear! Hang in there.

Skye is the Limit! said...

well i cant stop thinking about you.
and i love your email
i dont know if i ever had your number
please contact me!

kaylamessineo@yahoo.com
4012126718

Kristin said...

Oh Lacey! I don't even know what to say. I know there is no possible way that you would leave Makayla in an orphanage for a minute longer than she has to be, when your family is so in love with her and so ready to love on her. Decisions, decisions. Tell Jax to be a good big brother and get stable for his new little sister!!

Heather said...

Poor sweet guy.And poor mommy and daddy too.I know you are so worried about him.Try and take a deep breath and one moment at a time.Just one moment at a time.

Prayers and love to you all.

April said...

Lacey, I am so sorry you are going through all of this, especially now. I will be praying that you will get the answers you need for Jax soon.

Alison said...

Still praying for Jax and you all. So lovely to see his eyes in some of those pics. Hoping for a good day for him tomorrow.

jjpsmommy07 said...

Hugs and prayers coming your way. Get well soon Jax!

Kim K said...

prayers

Becky said...

What do they do for Right Heart Failure?!?

Cammie Heflin said...

I'm so sorry, I wish you had better news!

The VW's said...

I hate reading this about sweet Jax! It's so scary that heart failure can come on so quickly....I worry about this with Gavin all the time. One day they can be doing fine at their "normal" and then boom.....heart failure!

I will be praying that Jax surprises us all once again....he has had many scares in this life and he always seems to prove to everyone that he is a fighter! Tell him to fight hard and get home again soon!

Love, Big Hugs and Lots of Prayers!!!

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

i sure hope you get the stool results soon and that the pulmo visit tomorrow gives more answers! thinking of jaxson and your family!!!

Tiffany said...

Just came back into town. I am so sorry about Jax. Wish I was closer to help out in any way I could. Poor little Jax. You need to remind yourself just what a great little fighter he is. Praying that God will lead him and you both through this once again difficult path.

April said...

Oh I am so sorry things are so challenging right now... We're praying for you!
I agonized about a home vent as well, but can honestly say it was helped Caleb to be more healthy and has reduced our hospital stays.... I hope you are able to find the answers you need. Hug your little guy for us!

Colleen said...

Lacey, I'm so sorry you are having to make these decisions. I do hope that you will at least get home nursing soon if he comes home on a vent.I will pray for Jax and I'm checking here everyday.

Meghann said...

Oh Jax, get better sweet boy, get better! Lots of love and prayers!

Becca said...

Oh, Lacey, this is awful. Thinking of you, sending thoughts of better health to Jax. You guys have so much on your plates. I hope he starts to get better SOON!!!

Maureen Claypool said...

Poor little guy. He is in our prayers as always, Lacey. Hugs to you and sweet Jax.

DisneyRose said...

Hoping for the best for Jax. <3

DisneyRose said...

Hoping for the best for Jax <3

Holly W said...

praying soo hard for you and Jax and your family and Makayla who is waiting for you!
Tears in my eyes looking at sweet Jax...

mandd3 said...

I am praying, Lacey, that your path is made clear and the road smooths out ahead of you. You have so much going on in your life right now, and I pray both Jax and Makayla get to come home soon.

ParkerMama said...

The Trach Pod is ONLY for the trached kids that would have been put in the PICU JUST BECAUSE they were trached.

If Jax is PICU sick, he'll be in the PICU.

Parker is vented at night and during naps. For us it's been a blessing. But I know that everyone is different.

I can't believe that I looked away from you blog for a minute and Jax is in the PICU!

Did they, by chance, run that red ear for MRSA? Just had a friend who had a kid with MRSA ear infection.

It's a thought.

Sending love.

Tammy and Parker
www.prayingforparker.com

To Love Endlessly said...

I haven't been online until today. I'm saying lots of prayers and for healing hands on your precious baby boy.

DevonLeah said...

Catching up on your posts...just wanted to say we are praying for precious Jax!!!

Lori said...

Just getting caught back up after vacation....
I am sorry to hear that your little man is having a rough time.
Many prayers that Jax continues to get stronger!