Goodbye to our beloved Dr. Hawkins

It seems in this world of medically fragile/special needs, and constant hospitals, there is a lot of heartbreak. And it seems like our hearts are heavy much of the time.
We lost our beloved cardiac surgeon yesterday. Even though I knew it was coming, it doesn't make it any easier. He was diagnosed with pancreatic cancer two years ago, and given only 3 months. I'm so glad he lived for two years, because I know his family made a lot of memories, and took a lot of trips in that two years.Knowing this man had his hand on my sons, walnut sized heart, makes me forever grateful for his skills. Everyone feels indebted to their surgeon, ours goes much farther than that.
I used to work with this man before I ever had Jax. He was the head of the department, the surgeon that did all the complicated cases. He would sit by a childs bedside for hours if they weren't doing well. He wrote a letter to the nurses on our unit, after a couple nurses spotted a potentially life threatening problem, that sent a kid back to the OR in the middle of the night. He wrote how the nurses are the key to recovery, and how they are his eyes. What surgeon would take the time to write that?
And then, as Jax lay in the PICU, intubated, for 3 months, as we fought with the cardiologists about getting his heart repaired. We got the run-around...the schedule was full, and then he would get an infection and surgery had to be postponed, again. Then after they severely damaged my sons brain, I demanded a care conference, and I demanded that Dr. Hawkins be there. I knew he was the best, and I knew he was compassionate. Dr. Hawkins didn't even know that Jax was in the PICU, and that he so desperately needed his heart fixed. He promised me he would fix it, and that he was taking over Jaxson's care. In the next 3 weeks, Dr. Hawkins had done two surgeries on Jax, and he was finally extubated with success!
Everytime I look at Jax chest x-ray, I will think of Dr. Hawkins. In one surgery, he was trying to stop leaking chylus fluid in his chest, but we didn't know where it was coming from, so he just stapled every lymph. Seriously, it looks like someone went crazy with the staple gun in his chest! I smile everytime I see it!

I saw Dr. Hawkins last February, as Jax was being discharged from the PICU. He was in the hall, and he looked good. He didn't look sick, and he was with his daughter. Even though he retired as soon as he got the diagnosis, he was frequently at the hospital, teaching and giving lectures. He looked at me and Jax like he recognized us, even though it had been two years since we'd seen him. I kick myself now for not saying something, telling him thank you, and telling him how fantastic he was!
Its not fair, not fair for a man so great, to be cut so short, I can only guess that he is having joyous reunions with the children he lost, that he fought so hard to save!
We love you Dr. Hawkins, the hundreds of children, and children that are now adults, that are here because of you!


A little happier note, here are some pictures I just got in the mail from Disney. One thing when you go to Disney with Make a wish, you get a card for pictures. You know the people with the cameras, that take your picture and give you a card to buy them? This card we hand to the photographers, they take the picture, and we get a free CD with all the pictures. We took full advantage of that, and had pictures taken everywhere!

Animal Kingdom

Epcot center

Magic Kingdom






More Epcot

Hollywood Studios

snot, seizures, and stress.. oh my!

This is why I always put a onesie on Jax. I even have tank top onesies I put on in the summer time. But it was so dreadfully hot in Florida, that I left the onesies off. That lasted two days! He can get to his tube, and causes major problems. Stinker!

The cold is slowly making its way through the house. The only one not affected yet is Jax. How can that be? I have no idea! Arina is doing ok, still having fevers and still oozing snot. She did need oxygen last night when she was asleep, but she's fine during the day.

I took Jax to neurosurgery yesterday to discuss surgery for the VNS. Right now surgery is set for July 12. As soon as my insurance approves it, I'm going to try and move the date up. The surgeon asked me if I'd heard anything about it. I told him I'd watched a DVD, and if I knew it was this easy, I would have asked for it a long time ago! He laughed and said that its not quite that simple, especially for Jax. He does think its the best option for him right now. He is concerned about the incision on the neck. DS kids have generally short necks, that combined with trach ties, and puffiness, makes it extremely difficult to find a place to make the incision. He said we'll leave the dressing on that site until it is totally healed, to protect it from the trach ties. He's also more worried about infection at that incision site, and also the fact that he's on blood thinners. Jax will stay at least overnight, for that reason, and also because he usually requires the vent for a while after surgeries. Which is not a big deal with a trach, but has earned him at least one night in the PICU after surgery. I'm hoping its only one night, but Jax doesn't have a good track record with surgeries! I want the surgery done quick, Jax is having more and more seizures, and they are lasting longer. Last night he was up to 4 minutes on a seizure. I was dusting off my diastat when he finally fell asleep. I've never seen him fall asleep before the seizure even ends.

Still no news on our adoption tax credit. I joke with Ray that we adopted at the wrong time! And also joke about..is there such thing as post adoption fund raising?! When we adopted, we raised maybe 4,000 out of the 24,000 we spent. Right now people are making 15,000 on one fundraiser! Its crazy! What has put us behind is Ray didn't get the short term disability we were promised for his time off. So he got payed for one week out of the six he took off. We also knew that we would be getting 13,000 for the adoption tax credit. Little did we know that the government was going to be so crazy about getting people their money.
Was international adoption the wrong thing to do? I look at Arina and know what her life would be if we hadn't rescued her. And we love her so much! You know that Andrea with Reece's Rainbow always says..."there's not a shortage of families, just a shortage of money." How true is that??
I think we are just questioning so much right now because we are so strapped. Ray still thinks he should come home and forget about the move right now. Having him here won't help the financial issue, although we wouldn't have to pay for him to come home. I really hate to do that, this move is what we've wanted for 13 years. But we haven't seen daddy in over a week, and as it looks right now, not this weekend either.
I really wish the answers would just fall out of the sky and hit me on the head. Although I know that's wishful thinking, and it just isn't that easy!

The rest of Make a Wish

We have a yucky respiratory bug making its way through the house. I like to believe it was going from 80 to 40, a major shock to the system! Arina has it the worst so far, oozing green boogies from every orifice! Her sats have been beautiful, oh how weird it is to have healthy lungs! I'm terrified for Jax, because Arina was loving all over him, so he's bound to end up with this crap soon!
This is a post with a billion pictures. I put the rest of our trip up, because I don't want to do 10 posts of the trip. I left the pics small, to get more in. If you don't want to look at all the pics, thats fine. Its more for me, as this blog is my scrapbook!

Day two, Seaworld!



Flamingo's walking down the street!


Cooling off, it was about 90 that day!


I was so bummed that Jax slept right through feeding the dolphins.


Later that night, at GKTW. There is so much to do there, you don't even need the parks!



Mayor Clinton, and his wife are the mascots of GKTW. This night they were having a Christmas party. They do it once a week!
Arina LOVED the slide!

Day 3, Magic Kingdom and Epcot.
There it is, far across the lake!




Day 4, morning at GKTW, Universal in the afternoon.

Look, thats my baby boy riding a horse! Nowhere but GKTW would he be able to do that!


Doing Jax star, that will stay in GKTW forever!





Universal




Day 5, Animal Kingdom and Magic Kingdom.
Didn't really get any pics at Animal Kingdom. Oh well!


Our last day, we sneaked out to Kennedy Space Center before we had to catch our plane. I was so bummed because Mondo really wanted to go, and we didn't even have time to take the tour out to see the shuttle on the launchpad. Grrrr! Thats a once in a lifetime thing, since the shuttle had been delayed due to technical problems.
We'll definitely have to get back there for him.




Momma taking her Valium for the plane ride home!

Little miss slept the whole way home!

We can go back and visit GKTW anytime we want to. We plan on taking an RV trip down there in the next year or so. We are going to volunteer at GKTW. Almost everything that happens there is from the work of volunteers, even kids can volunteer! So if you want a project, and you live in Florida or can go down there, that would be a great one!
We met some really great families while there. I really miss it. It was a once in a lifetime opportunity for our family!