Friday, April 21, 2006

to Boston, To Boston.....

Abby and I spoke to the director of the SBS program at Children's Hospital in Boston today and he had great naswers to our list of questions (which Gib the dumbass left in the car but we managed to compose as we sat on the bed talking to Dr. Duggan on the speakerphone.

The ball is rolling on Ellie's transfer to Boston and it looks like she will be transferred sometime next week.

This will be a good step for Ellie to get into a comprehensive SBS treatment program that uses doctors, surgeons, nurses, nurse practitioners, nutitionists and pharmacists who deal with the patients in the SBS program and have expertise with this condition. This will also be a great improvement for Abby and I who will be near family and friends in Boston and the support that they can offer.

We are looking at months of treatment for Ellie and staying at RMH isn't very appealing to us for the long term. Abby's sister and brother-in-law in Wayland, MA (just outside of Boston) have offered to let us stay with them for a short while as we settle into the Children's situation. We are excited to join our first born child, Gus the Wonderdog, who has been there for a week or so already.

The doctors and staff at Yale (apart from Dr. Superwoman) have been wierd about Ellie's transfer. we're not sure whether they are offended that we are moving her from Yale, offended that we are moving her to Harvard, or simply that they will miss our little girl. Nonetheless, we have had to explain our switch to about a dozen people so far which is a pain for us.

So we have a change of scenery coming and a some changes in care. It will likely be hectic as we pick up and move and settle in again, but we hope that this will be it for a while.

6 comments:

Martha Brogan said...

Yale has been wonderful for Ellie. as her Gramma, I am delighted that she'll be part of Children's comprehensive program- we'll be able to see her every day! You've made a good decision.

katielmurray said...

My name is Katie and my husband and I had our 2nd child, a son, on Nov 21st of this past year. At 36 hours old he had 50% of his small intestines removed (reasons I can share later) anyway his is our MSG
Mr.Short Gut. HAHA
After 52 days in the nicu and2 more surgeries he was able to come home with us. I typed in short gut on google and came across you. I laughed and cried reading your blog, we understand so much of what you're going through. I would love to talk to you or your wife if you would ever like info or advise from a mother who has "been there" or "is there" right now. Our son, Scott is doing very well. No tubes, on TPN. It is true that guts just take time to learn to work harder. We understand the excitement of the "first poop".
I would love to help you in anyway I can. I've tried to look for other people with short gut kids and it's really hard to find. Our life was upside down for a while but slowly it is returning to some sort of normal and we are thankful everyday to have him with us. My email address is Iowak@aol.com
We live in Phoenix but I am from Iowa originally. We will be praying for Ellie. She is beautiful.
Katie and Scott

Sophie said...

Please let me know all the details of your arrival! You always have a small crash pad in Charlestown as well as a friend to go to lunch or dinner with in me. I can't wait to meet Ellie when she moves to Beantown. I will be in Chicago all day Tuesday but should be around the rest of the week!!!

Barbara Krause said...

I was away for a few days and returned to find all this incredibly good news. Poop, beautiful videos, great pics of baby, mom, and dad. I love the mirror shot. Anyway, catching up gave me a little more insight into how exhausting this must be for you - and even more admiration for the amazing courage, grace, humor, and strength you've shown in handling it all.

And great news about Boston. I echo Martha: you've made a terrific decision. You're both very smart, you asked all the right questions. We're all enormously grateful for the care at Yale-New Haven and at Uncle Ronald's...but part of what's right for Ellie is what is right for her 'rents. Go for it and don't look back.

Hugs, Barbara

Jennifer Leichter said...

We are looking forward to having you as is your good friend Gus. Love the Leichters

Adam Hurtubise said...

Gib--

Night quite the circumstances under which I envisioned welcoming you back to Boston, but welcome back nonetheless.

We're here for you all, whatever you need.

Adam