1.29.2009

Hazel's Reality Show


We have had a crazy week over here. Mostly yesterday. In the morning we drove down to Boston to meet with Hazel's surgeon. She has been choking on food more frequently, and I got tired of my heart stopping every time I fed her, so I have only been giving her purees and stopped giving her the finger food she so desperately wants. I suspected that her esophagus was slowly closing up on me, and that the narrowing we saw on the barium swallow was scar tissue and not inflammation. Mama was right. So, her fabulous surgeon who we love and who cares for her as if she were his own is scheduling her for the procedure that will dilate her esophagus. Of course, there are risks, in that she is still healing and while he thinks she is strong enough to withstand the procedure, the possibility of rupture is still there. This is what we were so afraid of happening before when she had the battery removed. A rupture is the worst thing that could happen.

We also learned on Wednesday that apparently the battery was so close to her aorta that if her esophagus had ruptured when it was removed then Hazel would have bled out almost instantly. I'm so glad that we were not told this before, but I'm not sure I wanted to know it now. It made out hearts sink, knots in our stomach, lumps in our throats (those are chakras three, four and five for those keeping track). Every time we see Hazels surgeon, he just shakes his head and says how amazing it is that she is alive. I hope that I never truly comprehend how close we came to losing her.

When we were in ICU, we got an email from a woman who had been reading our blog. She has a daughter close to Hazel's age and totally coincidentally is also a producer at CBS in Philly. So, she has been following our story and wants to do a feature. Everything has to go through the PR and media relations folks at the hospital, so while Jamie and I are trying to care for Hazel, that whole thing was in the works. We were discharged and it never happened and I didn't really think about it. I assumed that CBS was no longer interested, but lo and behold I get another email from this producer in Philly wanting to know if things have settled down for us enough that we could do an interview. So, yesterday when we got to the hospital, there was a reporter, producer and camera crew, along with PR from Children's Hospital. They all came up to meet with Hazel's doctor with us. Even as Hazel was playing in the waiting room, they were filming her. The camera guy was so great with her, and a natural grandpa, making faces and funny noises that Hazel loved. They set up lights and a camera in the exam room and put a mic on our doctor and filmed the appointment. It was easy to ignore the cameras, believe it or not., especially since we were so interested in what was being said by our doctor, learning more about the procedure that Hazel is going to have to have.


After our appointment was over, the crew followed us back up to Ipswich (did I mention the big sloppy snow storm that we got that day?) and they filmed Hazel playing, eating, mugging for the strangers. Then the producer took Hazel in the living room to play and Jamie and I filmed the interview with Kathy Curran, who was so sweet and funny. The interview was not that fun. I was not prepared to relive some of the emotions- how can I be? I am still in shock and traumatized enough that I am able to talk about the events in a stone-cold informational way, but if you ask me how I feel I'm pretty good at falling apart into a messy slobbering mess. And that I did. After talking for what felt like a million years, they had to get all kinds of strange shots of our hands, and of Kathy asking the questions, and of different angles. Then they photographed the battery, the remote it came from, and our new psychotic remote that is wrapped in packing tape. Sure hope that one makes the cut...

Then they left... The whole experience was strange and cool and totally surreal. It is going to air sometime in March, they think. They are going back to Children's in about two weeks to interview our surgeon more in depth and then they will edit all six hours of our afternoon together into a three minute feature segment. It is going to air in Boston and Philly, and it will be made available to any other CBS affiliate that chooses to air it. I'm so happy that Hazel's story is getting out there. I know so many of you have already changed the way you think about electronics and batteries, obstructions and croup, greeting cards and corrosion. That's amazing.

So Hazel will indeed be having this other procedure in a week or two. She will likely have to repeat it every month or two for some time. It will have to be under general anesthesia, so we will have to spend the night in the hospital. And we are so lucky that one of Hazel's many guardian angels, Mark Puter, MD will be right there with her in the operating room. I think the OR is going to be filled with Hazel's angels, bumping elbows and trying to be as close to her as they can manage. She is so blessed.

5 comments:

AlePancha said...

Awarness. How amazing that this can lead to save lifes. I think you are not just lucky to (still) have Hazel with you, I truly believe it was meant to be this way for some reason. You guys are so brave.

Shelley said...

You guys truly are amazing. I still don't know if I would be able to function. A few weeks ago Lauren coughed up blood in her sleep and I took her and the sheet to childrens hospital right away and the whole way there all I could think about was you and Hazel. The dr's were so non-chalant about the blood and it made me angry so I told them a short version of your story and I have never seen 2 dr's eyes go so big. They still didn't really examine her because she seemed ok but told me to bring her back in immediately if it happened again within the next 24 hours. Thank goodness it didn't happen again.

You guys are my heroes for the strength and courage you have had through all of this. You are always in my thoughts and my husband always asks how Hazel is doing.

Brenna said...

I cannot wait for some live-action Hazel! (though of course I watch your videos). Very cool, great to get your story out there as hard as it is to relive in detail. Hoping for a smooth procedure and a return to finger foods very, very soon.

kerry said...

Wow! I'm just catching up on your blog now.
It's so great that your story will most likely save the lives of other children.

julie said...

amanda,
how can we get our cbs affilliate to carry the story?!?

It must be terrible to relive the situation, but thank goodness the outcome was so wonderful.

love,
julie