Ok, I'm going to try and remember these next four months the best I can. It still seems like a blur, I may have to refer to his medical records. Ha Ha. There are things I will leave out, like multiple ct scans, MRI's, and placements of central lines and art lines, there are just to many of those to remember. I also forgot to say his heart defect. The typical T21 defect, complete AV canal, PDA, and pulmonary hypertension.
One day after we came back from California, Jax went back in the hospital with respitory distress. That was April 17, 2006. He stayed on the floor for a week, gradually getting worse and worse. From 1 liter oxygen to 3 to 4 to one night 10 liters by mask. That night I was getting very irritated. What does it take to send this kid to PICU? The residents picked their noses and just waited around. It wasn't until the cardiology fellow came by and freaked out because he was still on the floor. So then we were running to PICU. They imediatly put him on c-pap, but they waited so long that he only lasted about 10 minutes before they had to intubate him. They said it was pnemonia, and he was going into heart failure ( he was unrepaired)
He stayed on the vent for one week, but when they extubated him, he only lasted 8 hours before being reintubated. To save space, this happened 3 times that during a month and a half. He was finally extubated and went to the floor in May, but that only lasted 2 days and he was back intubated. On May 16 he had a heart cath, were his cardiologist attempted to block his PDA, which they said was huge and could be causing his respitory failure, but he wasn't able to block it off. He continued to get line infections and everything else you get in the hospital. When he was finally infection free we begged them to hurry and repair his heart before he caught something else. It was obvious we wouldn't get him extubated until then.
They scheduled surgery for June 12, and then the night before he spiked a temp and it had to be cancelled. We were devestated, would I ever get to hold my baby again? They then found that he had a chylothorax, or fatty fluid in his right lung. A chest tube was put in. Then they decided to do surgery and close his PDA, it doesn't require bypass, so they did that in hopes of getting him extubated. Of course it didn't work. On June 25, he had a hypoxic brain injury. I got to the hospital about 9 in the morning, and I could tell something was wrong. He had a high fever and his heart rate was in the 200's. Just then the lab called to say his glucose was 17. WHAT. How do you let his glucose drop to 17? Thats when I found out they had stopped all of his IV's because he was bleeding from them. Hello, then a few minutes later his temp went to 42.7, which is 108.0. Then the doc had no idea what that was in farenheit. I had to tell her. Then the cooling methods finally happened, but by then, his brain was fried. It was the combination of the two that caused severe brain damage. His cardiologist asked if we still wanted to fix his heart. It was horrible. His eyes would just wander like a blind persons, and he wouldn't move at all. Slowly after a few days, he started to come back around. We were not giving up on him yet, he had made it this far.
It was then decided that he couldn't have his open heart for two weeks because the brain had to heal. So they did another surgery to try and stop the fluid leaking in his lung, a thoracic duct ligation. A few days after that we finally got him extubated, Yeah. They kept him on bi pap to avoid having to reintubate him before surgery. 10 days he stayed on the bi pap. Here they took him off long enough for me to hold my baby for the first time extubated in 3 months, it was heaven.
On July 18, he had his open heart. He did fabulous. He had to stay on the vent for 9 days because of his already sick lungs. But then we finally got him healthy enough to come home. That was Aug. 7.After 4 months, 8 times being reintubated, 4 surgeries, and like I said, many lines, scans,echos, you get the picture.
Once again, I'm going to stop and I'll finish his story tomorrow, that 4 months alone takes up a lot of space. See you then.
9 comments:
Oh my goodness!!! Part two was a bit more difficult to read...I think because I was so frusterated at the docs, sad, angry all at the same time. I am sure you felt all those 100 fold. All of this just shows me what a fighter your sweet boy is! And what a blessing for him to have such a strong mom! :) I hope one day I get to meet him, and you!!
Oh and about your comment - Preslie was on O2 just after birth for a while, but not since, so it's been quite the adjustment for her (more then anyone) but since we live at 7000+ ft, her O2 sats are quite a bit worse up here, so i am so thankful they gave us all the equipment to hopefully avoid the hospital...fingers crossed! We go see the doc again at noon!!
Thanks for not making me wait too long for more of Jax's and your story! Like I said, I'm not very patient!
This part of his story has me in tears though! It is so frustruating and sad to have to watch your child suffer, have doctors not know what to do, not be able to hold your baby and then have something go wrong, like a stroke for reasons that could have been prevented!
Your story touches me so close since it sounds similiar to Gavin's! I don't like to think back to those days because then I get mad and so sad thinking of all Gavin went through, when he didn't have to, if doctors had made better choices! It saddens me to know that Jax and you have had to suffer so much too!
Gavin had his stroke after his heart repairs. He still had severe pulmonary hypertention and his lungs were a mess from all the damage that had been done by the heart defect, pneumonia and aspiration into his lungs. So, the doctors had him on HIGH doses of dieuretics and then he came down with C-diff. Between the two, he had a very high fever and became severely dehydrated, which caused the stroke. UGH!!! I kept telling the doctors and nurses that he was dehydrated and they kept saying he's fine and we want him to be dehydrated so his lungs can get clear. Obviously, they took it too far and I was right! I HATE thinking back on this! It makes me angry and I don't like to feel this way.
Anyway, that is Gavin's story in a nut shell. I know that you had asked me before and I never got back with you on how he suffered his stroke (SORRY!), so there you go.
I wish that Jax and Gavin and our families didn't have to suffer through this, but I also know that they are here for a reason and that their purpose in life is strong! They are fighters in every sense of the word and many have a lot to learn from them! Thanks for sharing your story with all of us. It breaks my heart, but it helps me to feel not so alone in our family's situation.
Keep fighting for that precious boy of yours! He is such an inspiration and so are you!
wow Lacey, what an strong little guy, Jax has been through a lot. He has an awesome mom and family fighting for him.
We weren't told much about what had happened with Gavin. I think that they were trying to hide the fact that they had made any mistakes. I knew that he was dehydrated just from my experience as a nurse. We didn't even know that he had had a brain injury until about 6 months later when they did a CT scan. They did one soon after the injury, but strokes don't show up on a CT scan until a while later, after the injury occurs. If he could have had a MRI, it would have shown up right away. (He can't have MRI's because he has a pacemaker.)
Anyway, doctors have been very hush about all of this and I only know what I know from my experience and from breaking down a couple of the doctors enough to share a little of what they think happened. One doctor said that they "dropped the ball." I said that they obviously 'threw the ball' because if he had been watched closer and if they had listened to me, none of this would have happened! So, hypoxic brain injury and low glucose were never discussed with us. Hmm.....I'm going to have to dig deeper I think! Thanks for the info!
Wow, we really are lucky here. When V went into heart failure at home he was transported to a nearby hospital and they didn't recognize it for what it was. The worst part for us was waiting the 6 hours for the mobile ICU to come for him (there's only one for the whole state). Once he was at Arnold Palmer they immediately diagnosed the CHF and had him in the PICU within minutes. After he came home they kept close tabs on his progress and after two weeks on heart meds and diuretics with no improvement, his cardiologist had him taken by the mobile ICU directly from her office to have him readmitted for his heart repair. We've come in contact with some insensitive docs in our time but thankfully no one who is directly involved in his regular care. I can't believe Jax had to suffer the way he did. He's such a strong boy.
p.s. We got our blankie today!! It's wonderful!!
I'll send a pic soon.
I love the last picture at the bottom!! All of that gorgeous hair and his sweet little face..... He is soooooo handsome!!!
I couldn't help but tear up when I saw the picture of you holding him, That time when I couldn't hold my baby was the HARDEST for me.....Juste being able to hold your sweet little baby makes it seems like all is right in the world....All is at peace....beautiful!!
I am so sorry that the doctors you had leave little to be desired!!!! UGH!!!!!
<3
Alyson
Wow Lacey...you have been through so much! In response to your comment on my blog, yes it is Type 1. I will pass on the blog you told me about. thanks! Tell sweet little Jaxon hello!
Do you mind if I put a link to your blog on my post today with a little info. on our buddy Jaxson?
Jax, you're one amazing, INCREDIBLE fighter;)
We love U & are praying for you!!
Keep on fighting!!
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