Wednesday, August 11, 2010

Wednesday update

This morning I woke up super cranky, and ready to beat anyone that got in my way. I thought the attending we had was one that I clash with horribly! Lets just say he doesn't listen to me, and he is a know it all. Not good with a medical mommy. I planned on fighting about the 3 days of vent training. That didn't work, so the plan is we go home Friday, after our last vent class. I can't believe how horrible I'm sleeping at night. I've never slept this bad when Jax has been in the hospital. My eyes have been burning all day!
I also forgot my camera, so no pictures either, sorry. Not much news on the venous congestion. When he is back to baseline, they will do a scan, it has a weird name that I can't remember, and look at his veins in his chest.
I about had a heart attack today as well. I was having lunch in the cafeteria with a couple of friends. Jax had been having weird heart rates all morning, they were coming up to do a EKG on him. While we were eating lunch a code was called. I froze, when they said CSU, I was ready to bolt out of my chair! But it was a different room.
Sheesh, talk about heart attack! It would be just like Jax to do that to me! And actually it was a little down syndrome baby. She had heart surgery, but she is ok, after they got to the ICU she was doing fine!
We should be submitted tomorrow. Keep your fingers crossed. I've been so consumed by Jax that I haven't really thought about it. Now I just want to go get her, so we can be a family, before Jax gets bad again!
It may be hard to understand through a blog, but Jax is one sick baby! He has multiple things working against him right now. Not only does he have heart and lung problems, but this clotting disorder on top of that is a bad combination, and its only a matter of time before something fatal happens! I don't want to be a pessimist, but I have to be a realist. I have to make our family prepared. This time was bad! We avoided a code situation only because he had a trach, so we didn't have to wait until he had full respiratory failure and intubate him. But he had heart failure, requiring strong drugs to make his heart pump, and the vent to breathe for him. The vent loses all scary meaning when you have it at home too. But it really is a bad thing to need that just to breathe. I just want to get him home so we can do some fun summer stuff before the boys go back to school! We have a Lagoon day with our down syndrome group next Tuesday. That will be a lot of fun!

15 comments:

Adrienne said...

Oh Lacey, you've been through so much with little Jax. I admire your strength through all of this and all the times before. I'm so sorry this is happening again and at this time. I do hope you can bring that sweet boy home soon and he can eventually meet his baby sister!!

mandd3 said...

I do not doubt that you have a better sense than anyone about how Jax's future will play out. Neither do I doubt that you are strong enough and loved enough and supported enough to make it through whatever God has planned for your whole family (Makayla included). I pray you have a smooth transition home on Friday and that you have many, many, many, many more years with sweet Jax by your side.

MichelleH said...

Lacey,

Your sweet boy is continuing to write his own medical journals and teach all who come into contact with him. He has touched so many lives. You have been his voice, his strength, his fight. He is lucky to have you, Lacey. Keep fighting Jaxsons fight! We will keep you in our prayers.

Michelle

The VW's said...

That code announcement would have freaked me out! I probably would have lost my appetite! Glad that baby is doing fine now!

Your family is going through a lot now.....I don't know how you stay sane! I would be, and I am so worried about Jax! I can't imagine life without him around.....and I don't even "know" him! He is such an inspirational and sweet boy! Thankfully he's a fighter too!

Praying he does well once you are home again! God has a plan for all of you....keep your faith in this!

Hope you get submitted today and are able to get your sweet girl soon! HUGS!!!

Cammie Heflin said...

Lacey, you are amazing! Sending good thoughts your way!

Tina said...

Oh Lacey I have tears in my eyes reading your post and reading just how bad Jax actually is. I just can't bear to think of him that way and here I am sitting so far away, what must you as his mother be going through. I will be praying for Jax, for miracles for just anything to make him better. I will also pray for your strength, although I already know just how very strong you are, I admire that so very much. Thinking of you so much and praying for better days, weeks, months and yes years ahead with Jax. Sending you much love.

Tiffany said...

My heart of breaking for you. We have been through those scary situations and I would never wish them on anyone. Glad to hear he should be coming home tomorrow. You are such a gift to Jax. Stay strong. He needs you. As always, praying hard.

Alicia said...

Lacey, I have been out of the blog world for a while and I am so sorry I missed all this.

I am praying like crazy for Jaxson, as well as you and your family. Also praying for the Makayla situation as well. I am so sorry all this is coming down like this.

No matter whether I read every day or not, you and your wonderful family are always in my prayers.

Love and hugs to you.

Kelly said...

Oh Lacey, I am just so sorry that Jax, you and the rest of the family are going through this right now. Jax is a brave little boy, and I know that he will keep on fighting. You, my friend, are one tough mama!! And I also know, that you won't let anything come between you and your baby cub!! Hang in there and stay positive!!

Continuing to pray for Jax & family!! ((HUGS))

Rochelle said...

Holding you guys up in prayer daily. Thankful that they are only taking 3 days instead of 10 (I know you would rather be home yesterday).
Praying for your paperwork to be submitted today too!

Mama Mason-Mann said...

I can't imagine what your life is like having to deal with the realities of Jax's life hanging in the balance all the time! I knew it was SERIOUS stuff when I heard Milrinone (sp?) was ordered. I know they only give that when things are not looking all that good. My thoughts and prayers are with you always. I wish I could fly out there and offer some real support, but I guess virtual support will have to do. Let me know if there's anything else I could ever do to help.

Cole said...

Praying for you and sweet Jax and the whole family including lil bitty girl. Hugs momma-

ktzmum said...

Lacey - you are the best mommy ever! I can only imagine how hard this has been on all of you. That sweet Jax - what a little doll. I am so sorry this is happening to you all - you are such an inspiration to me. I hope you can get Makayla home soon and I know that she'll be the best little sister to all of your boys! You are always in my prayers. God bless all of you!

Stevenson Family said...

Lacey,
I've been thinking about your family daily and prayer for you all the time. Stay strong momma!! You have a precious little girl waiting for you!!

Jeana said...

Praying for your little guy, hoping that he will be home soon.