Tuesday, November 16, 2010

A moment 6 years ago...

Last night I was searching for this photo...

I sent it in an email to our buddy Jacob, who was fighting off the seizure monsters last night. Once the email was sent, I hung around our flickr account looking at the photos from that moment in time.

It was 6 years ago. Max was in the PICU at Children's after having his first severe reaction to the flu vaccine. Of course, at that time we didn't know what brought on this terrible pneumonia. A couple of months prior, he had an upper respiratory infection, but he got over it. And then BLAMO he was hit with the flu vaccine, giving his respiratory system a shock. The vaccines cause a reaction which does things like breaks him out in hives, makes saliva pour out of him like a waterfall, and a huge amount of sneezing and snot pours out of him. At least, that's what we saw a couple of years ago when he had the reaction to the vaccines, which led us to get a allergy test done to confirm those allergies.

Back 6 years ago though, we didn't know what was going on. We took him to the urgent care because he was turning purple. And while his seizures and metabolic disease were still fairly new to us, we knew purple was not a good shade of Max. From urgent care, he was rushed by ambulance to the main campus, and was put on IV fluids. Fluids, on top of all the fluids that he couldn't control, couldn't cough out because of his poor muscle tone, caused double pneumonia and a boy so swollen by morning he looked worse than after brain surgery.

And thus began our month long stay at Children's for the second time that year. For the second time that year we were not given much hope of taking him home. And for the second time that year, he proved the nay-sayers wrong. It was a long recovery, but he did make it home.

We spent Thanksgiving that year in the PICU. It was not at all a great day. I was very upset of the prospect of yet another surgery to allow our son to live. I was hopeless, I certainly didn't feel thankful for a lot.

November hospital
(We were told at the end of our stay that he was put in this room for extra observation...extra observation in the PICU!...we were told that this was the room that 'babies went home to Jesus'. I don't know what made that nurse tell us that, we were past it, but I think I to this day would have preferred to not know we were that close to losing him.)

I try to not focus on that difficult time, and focus on the part where he did make it out of there. Most years, these dates come and go without much thought. But some years, I remember.

Max and his Monsters

I remember on this day 6 years ago, this was the son we had. A machine was doing most of the breathing for him. And a tube was in his nose to feed him. He had a mommy that was not all that optimistic. And a daddy who had just gotten back from having to live away from us for 8 months. We were worn, and our tears were too many to count.

PICU room

But on this day 6 years ago, I saw my son in a different light. This picture was by chance. I was trying to get a shot of him next to his loaner monster from Aunty Angie. He decided it was a great time to reach up and try to pull that tube out. He didn't know how important it was, he just wanted it out. It's one of my favorite photos of him. A moment caught in time. A boy who wanted to fight, when his parents didn't know if we could do it again. He was ready to take on the battle.



And fight he did.





After three failed attempts to get him off of the vent, we agreed to a surgery to give him a tracheostomy. The morning of that surgery, we felt absolutely defeated. It was not a surgery we wanted. We didn't see that he would have any sort of quality of life that way. We were new to this journey, and didn't really understand that he could in fact have a quality of life that way. It's just in that moment, we couldn't see it. But, we didn't have to go there. The morning of surgery we were waiting around after his surgery time was pushed back three times. They finally moved us to the next day, but Max had other ideas. He decided instead to cough the vent tube out. He coughed and coughed and coughed until out it came with a hiiiiiiissssssssssssssssss. And a week later, we got to take our boy home.

I guess this whole post is to remember...the hard parts of this time of year always get to the end of the story, when we got to go home. That while I can get stuck inside my head, remembering that hopeless feeling, if I just retell it all the way to the end of that story, we got through it.

I can get to feeling melancholy about not being able to go over the river and through the woods to see family this time of year...to eat Grandma's stuffing, and be with my brothers and sisters. I feel sad about not being able to travel with Max this time of year.

But, I never expected to be as happy as we are now, six years ago. I never expected a son who loved opera music. I never expected he would be joining in on school. I never expected he could communicate with us. I never expected we would have him with us today six years ago.

But, having him with us, our happy healthy strong SEVEN year old boy...now THAT'S something to be THANKFUL for. And that's what I need to remember.


Amanda Jaksha said...

Thanks for sharing. I am glad you are searching and finding your attitude of gratitude this year!

ferfischer said...

Awww! He's so little! He's the same size and age as Cici two years ago when we were in the hospital too! Amazing.

Deana said...

This is how big I think of him even now. (I wish he was still this little every time I pick him up!!!) But, I still think of my little peanut that I was always holding...my sweet little guy. Now he's a big stinky boy!

Jeanne said...

Thank you for sharing this. I'm having a bit of a difficult time right now with Josh and this helped me put things in perspective. Ours was 12 years ago, but the story is pretty much the same. Your positivity and optimism is a gift to all of us.

Deana said...


Sending you hugs! Wish we were closer, truly do.