Man I'm exhausted today. I'm not sure why, I would think that not having Jax home would make me sleep better. But I can barely keep my eyes open. I guess worrying about your childs health is much more tiring!! I'm not exactly sure how much longer we will be here. He is back to baseline, besides some extra fluid still on board, but I'm getting mixed signals (go figure). The team said we could get the vent and go home tomorrow. I ran into Kris, the trach, vent coordinator, and she said nope, its 3 days of vent training. I really don't want to stay 3 more days, but I doubt she'll budge with her training. When he had the trach, it was in the middle of the whole H1N1 scare, and the doctors wanted him out of the hospital as soon as possible. But they would not shorten our trach training. So my guess is the same with the vent teaching.
His pulmo came by today and wrote orders for the vent and we chatted a bit. She saw his echo from yesterday that showed his pressures were even higher at 62. She still believes its vascular congestion. the stool test came back normal, but she's not convinced that test is the tell-all. We are going to get his hematologist involved and see what he thinks. His albumen continues to drop, and we've checked all of the things that could be causing this.
Here's the scary part..Pulmo asked cardio if he has his vascular resistance is great, then his albumen would drop. He said yes, but that would be end stage. She is wondering if that is indeed what is happening. Like I said before, that would be bad news! I'm waiting for my ped to call me and I'll get her opinion before I totally freak out!
I'm also worried about our adoption fundraising. We were going to have the yard sale this Saturday. I pushed it back a week, but I'm wondering if I'm still going to have time to plan it. We really need this last big fundraiser before we go, but I don't think I have the energy to pull it off.
Honestly, I'm not sure what to do!
Update: Ray just called me and said they are moving Jax to the floor. The trach, vent pod.
1 month ago
28 comments:
Sweet Jax we continue to pray for you and your family. I so want to see all of you home and Makayla there with you too!
Oh Lacey - I really hope you get good news from your paed. I hope Jax can come home soon.
I'm so sorry you are stressed Lacey, I can't imagine the worry. It sounds like he's doing well if he just moved to the floor/pod. I hope they can get to the bottom of this all and determine what needs to happen next.
I also hope your garage sale brings in a TON to help get you to that little princess!
Praying!!! I hope they figure out what to do for Jax and I pray that this isn't end stage anything!!! We need our sweet boy around for a long time! Keep showing us your fighting spirit Jax!!
You have a lot on your plate Lacey! No wonder you are tired! Emotional stress is always more tiring than physical stress! Hope you get some great sleep and start feeling more like yourself! Hang in there and give Jax a squeeze from Gavin and me! Love, Hugs and Prayers!!!
Oh Lacey, I hope you get some answers soon! Still praying!! Hugs & kisses to sweet Jax:) Hang in there Lacey!
wow!! am not sure what to say...but I am sooo thinking of you and Jax! smiles
Still praying! Let me know if there's anything I can do.
Lacey, I wish I lived out in Utah and could host a fundraiser for you. I hope you get things all figured out and you all get back home and in your own beds (ALL of you!!!) soon.
love,
Amy
Continuing to pray for you and Jax! I wish you could catch up on your sleep while you have the chance, but I can only imagine how hard it is to sleep with everything running through your brain. We love you and hope that you get good news from someone soon!
Oh dear lacey I am so praying for good news. Thinking of you and Jax all the time. I wish I lived closer would do anything to help with this fundraiser, anything to get Makayla home.
I hoping moving him to the floor means good news??? Will continue to pray for your sweet boy. Love and hugs
Of course you are exhausted.Between the hospital and home and the adoption,the emotional and physical toll is taken to a whole new level.
Peace and love friend.I'll call you tomorrow.
Hello dear Lacey, praying for you and Jax! Hope he turns a corner soon and we see his sweet smile soon! Hang in there and know that with faith and prayer you can pull anything off! Look after yourself and love to the boys! God bless!
So sorry you're having to deal with all this :(
Three days of vent training? Really? I seriously don't remember three days of vent training. Trach training.....yup. Vent.....nope.
I remember an RT from our home health company coming and walking us through the vent, but that's it.
Let's see.....you switch the cords on the concentrator, hook it up to the vent, stick the vent on your kid.....and you are good to go.
The settings are by prescription and you can't change them on the vent unless an RT comes out to do it for you.
What the heck are they going to teach you that takes THREE days?
Lacey, the pictures you have of Jax just from two days ago look too good for this to be end stage anything.
You've got our prayers. Our serious prayers.
I wish I could help you with this yardsale. argh!
I will continue to pray for Jax and especially for you. You must be so exhausted!
Still thinking about and praying for you guys. I hope things work out soon.
We are praying for your son and your family. Praying that everything will stabilize and you can concentrate on your adoption. Prayers all around for you!!!
Praying for your family and your sweet Jaxson!
Is that a yes or a no on the yard sale this weekend? I have a snow cone machine (the good kind) with lots of yummy flavors. I will come and sell snow cones and donate all the stuff. Let me know when it is and I'll be there.
Continued prayers for your sweet little guy!
Lacey, I'm so sorry. Praying that God will ease your stress level and allow you to take comfort in His love. Wishing there was some way to help aside from prayer. Hang in there and tell that little man to keep fighting.
Praying!
get some friends, neighbors, family to help with the yard sale. i'm sure they would be more than happy to help. poor jax! :(
Continued prayers for Jax and for you. Thank you for taking the time to keep us updated.
Lacey, I hope they get you all home ASAP. At the play date the other day I found out we live closer than I thought. I'd be willing to take orders and do what I can to help with the fund raiser. When life grants you a moment to think about it email me to let me know how I can help. meghann(at)gelter(dot)come
Hugs sweet boy!
sending hugs and prayers!!!
I'm so so sorry! That little dude of yours is sure a tough guy. I've got my garage sale goodies ready for you. It is going to be an awesome fundraiser!
Love, bree
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