Saturday, October 17, 2009

Being thankful tonight.

I have to put his bed flat so he can roll to his favorite side.

A pic of my nice, quiet, corner picu room.

I have gone through a whole shlew of emotions the past couple of days. Adjusting to the trach has been easier than I expected. And I haven't freaked out yet when he cries and nothing comes out. Its just that Jax hasn't been in the picu longer than one night in about a year. So being down here for a while just sends memories flooding back, and remembering the death and sadness this unit brings. Yesterday morning when I came in, walking back to Jaxsons bed which is in the corner. A teenage boy across from him was crashing. I walked in a little after the chaos started. They had already brought echmo in and the surgeons were gowned up and his room was roped off. He is still on echmo tonight, but I hate every time I walk back to Jax bed I wonder if he'll still be there. In our picu they have a little butterfly that they tape to the door or curtain if a child is passing away. Its a secret code to leave that room alone, that a family is grieving.
I'm so happy that Jax is doing good, and its definitely nice to not be the sickest kid in the unit. To not be the one were the crash cart is being dragged to your bedspace, and the doctors are running all around. We've been there, done that. Also when everything is quiet, there is no running, but your baby is so sick that when the attending walks in and asks, "how we doing", your nurse says, "not very good". And the attending responds with "Thats what I hear". No one is running around. But your baby's vent settings are maxed out. They have the oscilator waiting outside his door, and they tell you he probably won't make it. We've been there done that too.
I couldn't be more grateful that my baby is so strong, and I know this probably won't be the last time he gets scary sick. We took the other boys to see Where the wild things are today. They bawled their eyes out when the boy left his friends and went home. You know what the first thing I thought was?
Oh my gosh what if Jaxson dies? My boys would never be able to handle it. Their grief would be beyond managable. I don't want to even think that, but I also don't want to be unprepared, because many people still don't think he has a very long life span. We have to ignore what all the doctors say, because doctors aren't always right. I would love to say we just enjoy him all we can while we have him, but I can't because I don't want to think of not having him, its to unbearable.
I just can't wait to get out of picu and up to the floor.

32 comments:

Heather said...

I love you Lacey and I do understand your feelings and I will not diminish those or tell you not to feel them because I have been there.But for now,look at Jax and see the strength in him,as I know you do,but look at all he has been through and all he has overcome and THAT is what counts.Not what others think.Kiss him and I'll call when we are back from SF.

Kristin said...

Soooo glad Jax is doing well. He's a fighter! Is that bed 11? It looks awfully familiar ;)

Tina said...

I keep praying for Jax's health and his incredible strength. He is an extraordinary child. God bless

Phoenix's Mom said...

Thank you so much for the pics! We were waiting to see those beautiful eyes!
He's an amazing little boy! You both hang in there! Give him big hugs and kisses from the Phenny Man and I!
Remember I'm here if you ever need anything!
Angela

Sasha said...

I am glad to hear that he is doing well right now. I hear and feel your emotions about being back in the hospital. I am sending you big {[hugs}}. I once told a friend that being in the hospital can be so hard and tramatic for parents because of what your child goes through and because of all that you see around you and wish you didn't see. Your words bring me right back there. Hang in there. You and Jaxson are very strong. You both are fighters and it will be good and less stressful when you get home!! Take care of yourself.

Stephanie said...

I know what you are saying. I understand you completely. We have just had one of those weeks too. Jaxson is strong, and I just KNOW this is going to help him so much. :) Let me know if you need anything. I am always here for you guys. Wish wee lived closer. :(

Does EVERY children's hospital use that green in the rooms???? Maybe we should all buy stock in who ever makes that paint. LOL!

Hang in there. Big hugs to all of you, especially Jax.

Steph and Christopher

Angi said...

Thanks for keeping us posted, glad he is adjusting well to the tach, he sure is a fighter:) Just wanted you know I was thinking of you..

Alison said...

Thanks for the update. I know what you mean about the trauma of the ICU - I hope you are out of there soon after a very uneventful stay. I'm still praying for Jaxson and I'll pray for the child on ecmo too.

Cammie Heflin said...

Oh Lacey, I can sorta relate to your feelings, I am so amazed by your strength. I pray and pray that you go to the floor soon and Jax keeps improving. He is precious and loved by many!

stephanie said...

Lacey, Jax is here right now, and doing better. So are you.No one but God knows when any of us will go. Yes the doctors can give their opinions, but God can give His miracles. Jax is one of those miracles. Love and kisses!

Kim said...

Jaxson looks wonderful! I'm so sorry you have to be surrounded by so much grief. Prayers for all those families as well as yours.

My name is Sarah said...

This is Joyce, Beautiful post Lacey. Jax looks so at peace in that first photo. As though he is saying, "thank you." It brings back a flood of emotions for me too. That is exactly how Sarah looked too the first time I saw her awake after her trach. The butterflies, oh that is so hard. But you are so correct, doctors can be wrong. Just look at Sarah. Praying you will be home very soon.

Becca said...

Oh, my goodness, Lacey. This is so sad. I'm glad Jax is doing okay, but I can't imagine having to also know all the other things that are going on around you. My thoughts are with everyone. The butterflies...wow.
Big hugs to Jax.

ABandCsMom said...

Happy to hear that Jax is doing so well. I completely understand all of the emotions that you're feeling. However, I also hear loud and clear the strength that you have within yourself. No matter what other think. Hold strong to your beliefs. Hold on to your faith. Jax has proved to be such a strong little guy. I'm sure he gets that from his mamma. I agree with you 100% doctors don't know everything. The good ones will admit that. Still praying.

Stephanie said...

I don't like the PICU either. I really don't. There is a feeling of "heaviness" in the air.

But we spend our time there knowing that we'll be moved out soon enough, which is just one more step into going home.

The VW's said...

Jax looks SO GOOD! What a handsome little guy! I'm glad to see that he is doing well.

I understand the emotions that come from being in the hospital, seeing others suffering and worrying about your own chio=ld's future. It is so VERY trying on your emotions!

I'll continue to pray for you and Jax and that this week brings only good to your family! Hang in there! HUGS!

sturpin said...

Oh Lacey, it's so hard to be in the PICU, to watch and listen and know what's happening to other's lives. I am so grateful that Jax is fighting so hard. Hang in there my friend.

BTW - I'm not a big fan of the trach collar either - they don't stay on well. Our HME (when she's well enough to be on it, not now) has a place to attach oxygen tubing - I like that much better.

Suzie said...

Oh Lacey my heart hurts for you. I have a son with mental illness who doesn't want to live anymore. I cry daily thinking that I might lose him at any moment. Love that little boy of yours. Give him kisses and hugs from me and Lily. And be sure to step on at least one of his tubes so he'll think of me :-)

Tausha said...

Oh Lacey, your posts always make me cry. My heart aches for you, your boys and your husband. You are such a strong women and little Jaxson is a fighter. I am sure all those emotions of being back where you are are tough to feel. He is a little angel and you are all in our prayers. Keep you head up.

ds.mama said...

Oh Lacey, you've got me crying. Your description of the PICU was so spot on it brought back the waves of fear and sadness. And then what you said about Jax at the end nearly broke my heart. I hope and pray you have Jaxson around for many many many years to come. xxoo

p.s. I posted a pic of him on my blog today :-)

Rochelle said...

Glad he is doing so well Lacey. We will pray that you get moved out of there asap. ugh the butterflies that is devastating. More prayers coming your way.

Mama Mason-Mann said...

Wow Lacey, what a roller coaster of emotions you're on. I'm so glad and relieved (putting it mildly) that he is doing so well and I hope you're out of the PICU soon and back on the floor. But most of all, I hope you're out of there and back home soon! Lots of love,
Amy and Chloe

Denise said...

Just that fact that he has the strength to roll to his favorite side is so awesome to me!!! He looks really good!! I am thinking of you guys so much and am anxious for you to get back home where you belong.

Emily said...

You have me in tears... I couldn't imagine having to go through all of that. Breaks my heart. I do plan on visiting. I'm hoping for early this week! Hope he continues to stay strong!

Melissa said...

We stopped by to see you yesterday, but you were away from the bedside. I was looking forward to meeting you. Maybe another time! Hope things continue to go well!

Becky said...

UGH! Been there...felt that. (still feeling it) From my PICU to yours...sending love.

Team Carter Jay said...

I was thinking that it was bed 11 too. We've been there. Keep on fighting Jax!

The Lehnick Family said...

SO glad to see that he is doing so well...so sorry for you to be around such fear and saddness for so many other families...I feel for them and can only pray that comfort goes to all the parents out there watching their children in a hospital bed...You are so strong and have been through so much, soon you will be home where you all belong...Still sending our prayers your way...

Conrad, Megan and Our Precious Keaton said...

Oh Lacey - im so happy that Jax is doing well! You are all in my prayers! Im hoping that you will be back home soon and that your little Jax will amaze you once more! Amaze you with how will be and how much love and thankfulness will be in your home! God bless!

Kim Rees said...

Lacey you are definitely in my thoughts and prayers. I am so glad that Jax is doing so well. Being in a place like the PICU DOES bring back tons of memories. Memories that I'm sure you will never forget but hate to relive. Remember God is good and he has brought you this far, he will continue to see you through. God Bless You and take care of yourself.

Melissa said...

Hi Lacey, I've been checking in on you both & I'm so THANKFUL that Jax is ok!!!
I can't imagine being where you are & going through all that you are...Please hang in there & know that I think of you both so OFTEN! I even have my friends checking in on Jax;)
Love you & sending more prayers!!
{{{{{{{HUGS}}}}}}

Cole said...

Oh dear Lacey- much love to you and your little warrier. I'm glad to hear things are going a little ok. many wishes that the flu does avoid you all (from your later post). HUGS!