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!
oh my lord!! what happened?! i just realized all of this?
ReplyDeleteOh 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.
ReplyDeletePraying for quick answers!! Hug that sweet boy of yours for us!!
ReplyDeleteI'm so sorry that he is not doing so much better!
ReplyDeleteI 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!
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.
ReplyDeleteThere 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.
Prayers and more prayers for your sweet boy!!
ReplyDeleteOh 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!
ReplyDeleteLacey 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.
ReplyDeleteHang in there. I wish I could come bring you lunch or a hug or something!
Praying for Jax and your family. Big hugs
ReplyDeleteMy 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.
ReplyDeleteMy 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.
ReplyDeletewell i cant stop thinking about you.
ReplyDeleteand i love your email
i dont know if i ever had your number
please contact me!
kaylamessineo@yahoo.com
4012126718
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!!
ReplyDeletePoor 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.
ReplyDeletePrayers and love to you all.
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.
ReplyDeleteStill 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.
ReplyDeleteHugs and prayers coming your way. Get well soon Jax!
ReplyDeleteprayers
ReplyDeleteWhat do they do for Right Heart Failure?!?
ReplyDeleteI'm so sorry, I wish you had better news!
ReplyDeleteI 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!
ReplyDeleteI 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!!!
i sure hope you get the stool results soon and that the pulmo visit tomorrow gives more answers! thinking of jaxson and your family!!!
ReplyDeleteJust 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.
ReplyDeleteOh I am so sorry things are so challenging right now... We're praying for you!
ReplyDeleteI 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!
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.
ReplyDeleteOh Jax, get better sweet boy, get better! Lots of love and prayers!
ReplyDeleteOh, 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!!!
ReplyDeletePoor little guy. He is in our prayers as always, Lacey. Hugs to you and sweet Jax.
ReplyDeleteHoping for the best for Jax. <3
ReplyDeleteHoping for the best for Jax <3
ReplyDeletepraying soo hard for you and Jax and your family and Makayla who is waiting for you!
ReplyDeleteTears in my eyes looking at sweet Jax...
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.
ReplyDeleteThe Trach Pod is ONLY for the trached kids that would have been put in the PICU JUST BECAUSE they were trached.
ReplyDeleteIf 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
I haven't been online until today. I'm saying lots of prayers and for healing hands on your precious baby boy.
ReplyDeleteCatching up on your posts...just wanted to say we are praying for precious Jax!!!
ReplyDeleteJust getting caught back up after vacation....
ReplyDeleteI am sorry to hear that your little man is having a rough time.
Many prayers that Jax continues to get stronger!