Thursday, June 3, 2010

June of 2006

Continuing our anniversary of Jaxson's long hospital stay, I didn't go into much detail in May, but not much happened in May. June 4 years ago was a hell month for us! I didn't take many pictures, but there was a lot of sadness in that month, and the camera sat forgotten most of the time.
Because Jax was there for so long, he had 4 nurses that were his primary nurses. They had him every shift they worked. One of our night nurses, Ruby, was always taking pictures of Jax with the hospitals Polaroid camera. (Yes, this was before they got digital!)
This picture Ruby took, and its my first time holding my baby since May 7, this picture was taken June 3!


At the end of May we finally had Jax infection free. We begged the cardiothoracic surgeons and the cardiologists to fix his heart now! We knew if we didn't do it soon he would catch another infection. We also knew that he wasn't going to be extubated until his heart was fixed. And the time spent on the vent already was frying his little lungs. We didn't have much time! This was our first bad experience with the hospital. They kept telling us the surgery schedule was full. How could they not bump a child back that wasn't as sick as Jax? We know its been done before, but they would not do it. They scheduled surgery for the 12th of June.

June 11, Jaxson spiked a temp again. At the time I didn't think a whole lot about it. It wasn't a super high temp, so we didn't start doing blood cultures or anything like that.

But of course the next morning on our way to the hospital before surgery, the nurse called us and said they cancelled the surgery! The cute little nurse practitioner for CT surgery, who I knew well because I worked with her on my unit, came to talk to us about it. I could tell that it was killing her, because we were good friends, and she knew how badly he needed this repair. I sobbed to her, telling her I was never going to have my baby back. She told me the risk was just to high, they can't put him on bypass with a possible infection somewhere. We were heartbroken!
Life in the PICU was interesting. Sedation drugs no longer worked, so he would be wide awake, moving around. It was like the vent was a new accessory he had!

Jaxson's cardiologist decided that we should try to close his PDA, to see if that would help his respiratory problems, and get him ready for his open heart. He took him to the cath lab, and found that his PDA was huge. He was unable to close it in the cath lab, so they scheduled his first heart surgery. Jax developed a chylothorax in his right chest, so a chest tube was put in. They couldn't figure out how he got it since its usually caused by surgery. They think that the incredible pressure in his chest just caused leaking. So they put him on a fat free formula, which meant my breastmilk was no longer used. That's when I decided to stop pumping. There was no way that even when he was extubated, that he would ever nurse again. His PDA surgery happened on June 18th. It was nice and uneventful. He now sported two chest tubes, one on each side!

Closing the PDA did not help, they extubated him a few days later and he once again failed. On June 24th, they started a new med to try and dry up the chylothorax. He was no longer getting fed, they were running TPN and lipids for nutrition. The med they started to try and dry it up, caused an allergic reaction, and he started having drug fevers.
On the morning of the 25th, I got there about 9am. I knew something was wrong because he had the whole team around him. He had a high fever, causing his heart rate to be around 200. He was on heparin, and was oozing blood from all of his IV lines. So they stopped all of his IV's. Which meant he was getting no nutrition in his little, fever ridden body. Soon after I got there the lab called and said his glucose was 17. That started a frenzy of pulling glucose off the crash cart to give to him. They think his glucose bottomed out to 0, because of the time it takes the lab to run it and call us. That was the main thing that caused his brain injury. An hour after the glucose incident, they let his temp get to 108.0! The combination of these two things caused a lack of blood flow to his brain. I called my ped that night and left the most horrific message for her. I can't imagine getting that message. I sobbed that they were killing my baby!
It would take a few days to see the full extent of his injury, because it was a diffuse injury, so over a few days it gets worse. The MRI on day 3 showed brain damage over his entire brain! Heart surgery talked stopped, and our cardiologist asked us if we still wanted to repair his heart, or just take him off life support.
That's how June ended. Jax was the most bloated he'd ever been from the brain injury. He no longer was awake, and we had to decide what kind of life we wanted for Jax. Nurses cried to me, saying they couldn't believe this had happened. The nurse in the picture was one of his primary nurses. Dear Pam, my all time favorite. She was hilarious, but also serious when she had to be. A 24 year PICU veteran. I couldn't have done this horrible 4 months without her!
And do you love the Christmas pictures? It was a disposable camera the hospital gave us, with Christmas sayings on the bottom. We didn't know that until we developed them!

19 comments:

Rochelle said...

OH Jax, you are such a fighter and have come so far in 4 years. I am in tears just reading of that horrible month for you.

Mama Mason-Mann said...

Wow, what a horrible horrible month. I'm so sorry Lacey. Jax is such a strong little man. What a fighter!

ANewKindOfPerfect said...

Lacey I feel like I held my breath the entire time I read that. I can't believe all that happened. :(

Kelli said...

Lacey...thank you for sharing this story. I am in tears over what you and your family went through during this time but I am so amazed at what a little fighter you have. What a strong boy Jax is! HUG!

Angi said...

That must be tough to repost:( You do such an amazing job with everything that has been placed before you!! You were chosen to be Jax's mommy:-)
(truth be told I have trouble with toddler that has an unxplained fever for 5 days, you are truly Super Woman to me )

Sweet Pea's Mommy said...

I'm speechless! And close to tears! You are an amazing mom and Jax is an incredible little boy!!!

The VW's said...

Jaxson is such a tough boy! He has been through so much and look at him now! Reading this had me in tears, thinking of all your family went through and also because it is so similiar to the road that Gavin was on about 3 years ago! Our boys are truly miraculous and we are so blessed to have them here with us today! Love and Hugs!!!

Becca said...

I've heard some of this story before, and it is just as heart-breaking reading it this time. The 108 fever is just apalling. Sweet little Jax. He's such a fighter and you are such an amazing mom.

April said...

Oh you both have so much courage! Amazing and so tender...

To Love Endlessly said...

wow, absolutely amazing...Jax is one heck of a FIGHTER and you're one amazing mama to take such wonderful loving care of him. 4 years ago was indeed a terrible time for you sweet boy.

Meghann said...

This made me cry. I can't imagine... I love your family so much and Jax is just an incredible little guy!

mandd3 said...

If just reading this is so painful, I can only imagine what is was like to live it. I have my own hospital nightmare, but it was only two weeks, not 4 months. It really takes my breath away to think about it. God bless, and may each anniversary bring you more healing.

Alison said...

How awful and heartbreaking.

Jaxson is obviously made of tough stuff!! (And you too...).

Alicia said...

What a difficult anniversary to have to live through every year. I held my breath at times while I was reading your account of those days, and at other times, tears rolled down my cheeks. Jaxson is such a fighter. A miracle. And you, his family, are so blessed to have him. I can't believe how he was treated at that hospital, unbelievable!

Thank you for sharing your heart.

Michelle and Sean said...

I can't even imagine what you must of felt with all of that happening. Its so frustrating. I know it happened four years ago but I just feel like while reading it I just wanted to yell at them for not paying closer attention.

What a great little guy Jaxson is. He is such a fighter and he really wanted to be here. He is a miracle!

Stevenson Family said...

You are such an amazing mommy! We went through the ringer in the PICU but nothing like you. Jaxson sure picked the perfect family to care for him!!

Jessica said...

Deck the halls...we almost killed your beautiful child??? Ugh, that place gives me chills! It's difficult for me to read this post let alone comment as I know all that you and your family have been through. What is Jax made of?? That kid is an amazing miracle!!! I know he feels the love that so many of us have for him! I love him! XOXO Jaxson!

Evie's Story said...

I really appreciate hearing more of your story since we came in later to the drama. Oh friend, doesn't it just kill you when drs override a mothers intuition and SHE IS RIGHT!!!

I'm so sorry for all the heartache! J is a rockstar. My goodness his little life is such a miracle!

Anne and Whitney: Up, Down and All Around said...

i did not know any of this story before - i am glad you are sharing it with us, lacey! i just CANNOT imagine (an understatement) how in the world you got through all of this or how jaxson did - he is such a fighter!!!
what an AWFUL AWFUL ordeal! jaxson is so lucky to have you guys for his parents!!!