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
I'm so sorry to hear about the passing of Jax' surgeon. I know how I'd feel if I heard that about Sammi's cardiac surgeon, too. These people make such a huge difference in our children's lives, saving them, holding their hearts in their hands. It's incredible. I'm so grateful. It's quite a legacy he's left.
ReplyDeleteLove the Disney pics!! That's so cool that they have those photo op locations all set up! I've never been there (well, not since 1973, anyway), but it looks like something we'd have to be sure to take advantage of when we do finally go!
I'm so sorry to hear about your friend..
ReplyDeleteThe kids look great in their outfits.. and I LOVE the bow you made to match. :)
Sorry to hear about Dr Hawkins.
ReplyDeleteLove all the Make a wish pics, looks like you guys had a great time!
I'm so sorry to hear of the loss of this wonderful surgeon. May he forever live on in your hearts. The pics are great. Hugs
ReplyDeleteGreat pictures. So sad about Dr. Hawkins.
ReplyDeleteSo Sorry to hear about your doctor. :(
ReplyDeleteYour pics are so awesomely cute!
I am sorry you have lost someone that has meant so very much to you.To Jax.
ReplyDeleteI have loved living your trip vicariously through your great photos.Love all the smiling,happy faces.
So sorry to hear about the passing of such a special man. I'm glad he was able to touch jax's and your lives in such a positive way.
ReplyDeleteThanks for sharing the beautiful pictures! what an amazing gift. I love seeing all the family photos!
How sad about Jax's surgeon! He sounds like an awesome doctor and a great man in general! He must have been such a blessing to your family and so many others!
ReplyDeleteLove all the pictures from Florida! Hugs!
I was so sad to see the news about Dr. Hawkins on your blog today. He was also the surgeon who saved my son. He was so wonderful, and I truly can't put into words how I feel about him. He was such a major blessing in our lives.
ReplyDeleteAnd...on a brighter note...love your disney pictures. I'm glad you had a good time.
So sorry to hear about Jax's surgeon. These people really are so important to our kiddos.
ReplyDeleteLove all the photo ops at Disney! I can't wait until Claire is a little older to take her!