Thursday, October 2, 2008

Decision day



Today is D-Day with Dr. Spitenup, when we throw ourselves at his quirky mercy and see if Hope needs surgery to perform a fundoplication and install a feeding tube.

We pushed up an appointment set for late October when Hope added a new trick to her repertoire: Projectile vomiting. It's eased, but there was a week or so when she'd make like "The Exorcist" twice daily.

Eleven months into being parents of a special need child, we've had to re-learn worry. It's a tricky balancing act. We can't rush to the hospital every time she thew up old blood. But we shouldn't get used to it, either.

A fundoplication, which wraps part of the stomach around the esophagus, could help with her reflux. A feeding tube would allow us to continually pump calories when she sleeps to fatten her up.

When Spitenup broached the fundoplication and feeding tube a month ago, we were nervous and scared.
We've since slowly warmed to the idea and, after a summer of Hope spitting up blood and negligible weight gain, we've concluded it may even be overdue.


Ideally, we'd like to coordinate surgeries with our ear-nose-and throat dude, Dr. Frosty. He wants to trim part of her windpipe -- the larynx -- to fix her heavy breathing. He thinks part of her problem with weight gain is because she burns too many calories breathing.


But we shall see. Spitenup has a way of confounding us.

5 comments:

Rachelle said...

Good luck with Hope's doctor visit today. We went through the same thing with Joey about a year ago, with him having a fundo in January of this year. Of course it's hard, but it was one of the best decisions we made regarding his health. We will keep Hope in our prayers.

Heidi @ GGIP said...

Good luck with your doctor visits. I'll be interested to see what they say about possibly doing the ENT surgery and the Nissen at the same time. WE have had both of them done separately. Our ENTs are VERY conservative with the suppraglottoplasy, which sounds like the surgery you described.

It is a balancing act, parenting via surgeries.

Misty said...

i have been thinking of hope all day and hope the appointmen went well! please let us know what will happen.

we are going through very similar things here.. we are waddling back and forth... it is so hard. we also want to know if they will put mason's ear tubes in at the same time..

i hope all goes well. it will be for the very best! lots of hugs!

Debbie said...

Hi Guys,
I hope today's visit went well. If it brings you both any comfort, all of us who are watching your journey with Hope, we can see all your decisions are made from the purest of hearts. You will do the right thing whatever you choose. Love is good like that!
xoxoxo, deb

Tracheomalacia.org said...

My Son went through nearly the same thing. He had a nissen done and has done well ever since. I'll keep up to date with your blog, your daughter seems to be about the same age as my son. You can reach me if you have any questions through Tracheomalaica.org

All The Best,

Travis