Oct 6, 2010

It's "Confusion " Time

For ten years now we've been going to the local children's hospital for Pamidronate I.V. infusions for The Boy's bone disorder. When he was little The Boy referred to them as "confusions."

We began at two months of age every month for 3 days in a row. Then every two months for 3 days in a row. Then every 3 months for 3 days in a row. Now we are at every 4 months for 3 days in a row. In the beginning it took approximately 8 hours to run the fluid as The Boy was so tiny and the hourly amount had to be so small. Because of his kidneys and the nephrocalcinosis he had as an infant he also required a lot of extra fluid also slowing down the process. Now days we are able to finish is about 5 hours. Things are looking up.

The Boy was one of the first children in the USA to begin the treatments that originated at Montreal Shriner's about 11 years ago. We were very fortunate to have a nephrologist in our city who was up on the latest research all those years ago as there are still kids all over the USA struggling to find knowledgeable physicians to this day. It is the only treatment that has improved the quality of the very difficult life that children have with Osteogenesies Imperfecta have. It helps strengthen bone, reduce fractures and most importantly relieve the chronic, debilitating bone pain that accompanies this disorder. Terrible bone pain.

For years we were crammed into a tiny room with one or two other patients. Recently we have been blessed with a brand new outpatient infusion center which is state of the art. The Boy was busy playing PlayStation today while I was reading my favorite blogs on the hospital computer. Each bay has one complete with Internet.

I also finally got to see the new Alice In Wonderland movie. Yes, movies too! I'm not a huge Tim Burton fan but curiouser and curiouser I ended up loving the movie.

Being able to actually sit still for an extended period of time and tumble down the rabbit hole with Alice was sheer bliss.

Photo from Disney's Alice In Wonderland

Right now I'm off to flush The Boy's I.V. and then I'm in bed! No doubt I'll be dreaming about cakes and rabbits and hookah smoking caterpillars. And other such confusions.
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debe said...

That sounds like a wonderful change. Not only more comfortable for the Boy, but for YOU!

Does he have a port that stays in his arm? I can not imagine starting a new one so often!

Hugs to you both..


Debe: We had a mediport for years but ended up getting a blood clot in The Boy's superior vena cava. We are able to keep his iv in for 3 days in a row. I flush it at home every 6 hours. This has worked well

Kathleen Scott said...

I hated going for chemo, sitting in one place for the hourish it took to drip into my arm. I am soooo impressed with The Boy. He's amazing. But you knew that.

And so glad you have a cheerful place to go now, where the surroundings are appealing and you both have something interesting to occupy your minds. Thats a bit of medicine too.

Kathleen Scott said...

PS I'm not much of a movie-goer but we went to see Alice in 3D and I loved the swirly-odd plot and fabjous characters.

Diane said...

Yay! Glad to see the new outpatient 'bay'! I learned something new ( I always learn from you ) I never knew OI children had terrible bone pain...so sorry to hear that.
How is the pain treated?
<3 Diane


Diane: The Pamidronate has taken care of the bone pain. Prior to this I think narcotics were the only temporary relief.

Elizabeth said...

The Boy IS amazing. We've been going through six hour infusions of immunoglobulin, and Sophie is taking it quite well. We have a nurse coming to the house, so I'm able to putter around, but it's hard to do this every six weeks. I can't imagine how hard it is to do for as long as you all have --

Anonymous said...

swanky new infusion palace... remember how lucky we used to feel when the room wasn't full, and we could steal a squishy chair????