Monday, March 22, 2010

Dusting off some pictures.

I was going through pictures this past weekend looking for pictures of Ray for his birthday post. I found some pictures from Jaxsons horrible 4 month hospital stay, right around the time he had his open heart surgery. They were pics that got put away, ones that didn't go into his baby book. Not that they are much different, it was just a reminder of that scary time. And next month will be the 4 year anniversary of when he was first admitted for that looong stay. It seems so long ago but yet so vivid. I still don't know how our family survived!
I'll give a short history on this stay. So much happened but I'll try to be brief, since I didn't have a blog back then, you can't go look it up. I wished I did have a blog then. I do believe its important to remember even the bad stuff. Like it would be nice to be able to go back and remember this was the day a new line went in. Or this was the day he was reintubated for the 4th time.
Jax went into the hospital on April 17th, 2006. He was 4 months old. He was admitted for respiratory distress, something he'd been in for every month since his birth. AV canal defect and his huge PDA was making it impossible for him to keep his sats up. His left lung never stayed inflated because his heart was taking up his whole left chest. I can't believe his cardiologist told me at birth that they wait to fix this defect until they get bigger. But most kids I know with this defect never gain weight and struggle until its fixed. After being on the floor for 4 days, on night he really went downhill and was sent to PICU. They put him on c-pap but quickly had to intubate him. That was the beginning of hell. He initially had pneumonia. But that of course caused heart failure. So picc lines and art lines went in, and then of course the infections started. After one month in the hospital he still couldn't stay off the vent. He was finally infection free so we scheduled his open heart. But the night before surgery, he spiked a temp. I remember crying and thinking he was never going to be well enough for surgery. They decided to take him to the cath lab, thats when they saw that his PDA was huge. The doctor tried to close it, but it was unsuccessful. After another two weeks of not being able to extubate him, they decided to do surgery to close the PDA. That was his first heart surgery. It was also unsuccessful at keeping him off the vent. They would extubate him and he would last maybe 24 hours. We were in our 3rd month in PICU when he had his brain injury. The brain injury was from severe hypoglycemia and hyperpyrexia (critically high temps) He had a fever from a drug reaction, and they weren't feeding him because he had a chylothorax (fatty fluid in the lung) and he was on blood thinners and was oozing from all of his IV sites. So they stopped them all. When I got in that morning he had no nutrition, IV or otherwise going into his body, and his heart was racing and his temp was high. As soon as I was about to ask about no fluids, the lab called. His glucose was 17! But they believe that it bottomed out to 0 if you think of the time it takes to draw the lab, send it, and the lab to read it and call. So they pulled glucose of the crash cart. I was fuming, little did I know what it did to the brain. Then they let his temp get to 108. Seriously, this is with a nurse by his bed ALL OF THE TIME! Ok, I'll keep going because I could go on forever about the brain injury. Anyway, we demanded a care conference and for the head cardiothoracic surgeon to be there. They couldn't do his open heart for at least two weeks to try and let the brain heal a little. But they had to stop the chylothorax. So he had his second heart surgery to try and stop that. So now he has the bra-line scars on both sides. But that indeed dried up the chylothorax and they were able to pull the chest tube and finally get him extubated. But it was touch and go. They kept him on c-pap 24 hours a day with the exception of 2 hours when he had CPT. And there were multiple times that they wanted to intubate him. We were able to keep him extubated and on c-pap for 9 days until he had his open heart.
This first pic is him on the c-pap. He had gotten so fat from continuous feeds and zero movement for 3 months. Plus all the fluid he retained with his sick heart, and his huge belly from constant air. These pics are dark because its a disposable camera. We didn't have our digital back then. It was a bingo gift one week (the hospital played bingo every Wednesday and gave the whole hospital a gift. After getting tons of stuffed animals they had to be creative with his gifts)It had a Christmas logo on the bottom. Thats why the pics are uneven, I cut off the bottom.

This was the day of his surgery. They took his c-pap off so we could all hold him before he went in. This is my mom holding him.

The first few days after surgery.




His million pumps. 18 to be exact. The back and front were filled.


Slowly losing a little puffiness in his face.

He stayed on the vent for 10 days post op, and finally was able to be extubated. He was in the hospital for 120 days, all but 14 days were spent on the ventilator. He had 4 major surgeries, and countless procedures. I can't remember how many different picc and art lines he had. Or how many CT's and MRI's he had. Sometimes its good to look back at these times and just thank God for your miracle baby!

23 comments:

Kristin said...

What a true fighter! I can't even imagine going thru something like that.

Alison said...

Wow - he has been through so much. And you know what I hadn't realised? His big PICU crisis was unfolding at exactly the same time as Ashlea's NICU crisis! He was hospitalised on the 17th April for 120 days, she was born on the 21st and hospitalised for 143 days.

Weird that the two of us were going through the worst experience of our lives, at exactly the same time - on different sides of the planet and now we are part of each others cyber support network.

I think the main thing we have in common is that our kids are FIGHTERS.

Colleen said...

Wow, what a journey! It's hard to look back at those dark days, but it's also such a blessing to be able to share your amazing story.

Heather said...

Oh,my little guy... bless his heart.He is such a courageous boy.I tell you,this extra little chromosome they came to us with, has super human strength.No joke.I so wish that didn't have to fight so hard,that I would take from them but anything else,I would never go back and change.
Love to you all.

Dotty said...

wow! talk about a story! what a strong trooper you have there! he is amazing!! thank you for sharing this story. your such a incredible mom. HUGS!

Denise said...

No wonder we all have such love for Jax...he is truly a miracle and the strongest kid I know. And no wonder we think so much of the rest of you guys who had to fight right along with him!!! I know I owe you an email back about the job situation....was trying to see if I could find anything out...not much to tell I am afraid.

Tina said...

...and what a fighter, Jax never ceases to leave me a little speechless, when I think about just how much he has already had to go through, really what a fighter, but now it's time he got a break. Ofcourse this goes to the rest of you as well, what courage and strength it takes to watch your baby having to deal with so much.
Yes thank God for your miracle baby.

The VW's said...

WOW! What a miracle boy! It is amazing that he is here today! What a blessing!

These pictures and your thoughts on those months are so very similiar to Gavin's 4 1/2 months in the hospital! It's amazing both of our boys are here today!

It's difficult thinking back on those days, but it puts things into perspective, doesn't it?

Thanks for sharing your sweet boy and your wonderful family with us! I feel very blessed knowing you! Love and Hugs!!!

Corinne Judy Smith said...

What an amazing story and amazing fighter Jax is. I know you had told me a bit of that story when I saw you, but seeing the pictures of him puts it all in perspective. You are all fighters, him for fighting for his life, you and your family for fighting to keep him alive, healthy, and happy.

Alicia said...

I know what you mean about wishing you had a blog back then. I wish I did too. Like you said, it is good to remember even the bad times. It is cathartic.

Thanks for sharing the story of Jax's long hospital stay. I was fuming as I read about his brain injury and how it all happened. Sounds like the hospital dropped so many balls in Jax's case, and is at serious fault for all that happened to your sweet boy.

Jaxson is such a blessing and a miracle! Praise God for him!

Tausha said...

WOW, What an amazing little boy who has been through so much along with his Mom and whole family. Your strength amazes me. You are all fighters!!

Rochelle said...

He is one amazing little guy! Thanks for sharing his story. You all continue to amaze us with your strength and attitude!

kecia said...

wow! What a fighter he really is...and you too! I am amazed at how positive you are about everything! No wonder you were blessed to be his mommy!

Hope said...

What a long road he's traveled. He is a fighter of the sweetest kind.

Becca said...

OMG, Lacey, he's just been through so much!! Thank you for sharing this. I wish I could give you both a hug!

Anderson Family said...

I too like looking back - to remember the how bad it was and then think about how much better it is now. I can't believe how chunky he was - such a sweetie and definitely a miracle!

By the way - your blankies are done so I will give you a call sometime so I can get them to you!

Tausha said...

I am sure it's very frustrating!! I promise to contact you if I hear of any other babies out there.

mandd3 said...

That it quite a saga. I have heard of (and lived through) so many hospital horror stories where one wrong move can cost so dearly. I hope when you look back now it is easy to pull yourself back to the here and now and that you don't dwell in that awful place for very long. He is definitely the little miracle man.

Evie's Story said...

Oh Lacey...it was so hard for so long, wasnt it!?!?!

He's come so far and continues to fight so courageously! Thanks for sharing your heart and bits and pieces of the story for those of us who have come to know and love Jaxson later in his journey!

ANewKindOfPerfect said...

Lacey, I already knew that Jaxson was an amazing fighter. He is a strong miracle boy!! Reading through that breaks my heart all over again and reminds me of how far he's come.

Thanks for sharing those pictures. Maybe someday I'll be strong enough to share the pictures of Peanut after her cardiac arrest and in the PICU.

Michelle and Sean said...

I can't believe all that happened and all he has been through. You were smart to take the pics of him even if he was at his worst.

I didn't want to remember Maggie like that and thought that a lot of her stuff was going to be temporary so I didn't take a lot of pics of her when she was having problems at first. Luckily my sister would bring her camera and take some. If it wasn't for her I wouldn't have any pics of Maggie little. Anyway you had the right idea.

He is truly a miracle and so brave. Thank you so much for sharing his story with us.

ABandCsMom said...

Jax, you are such a trooper. You have quite a family too.

Jeana said...

Wow! Jax is a miracle baby, there's no doubt about it.