Monday, July 24, 2006

A word for the day

Tentative~not fully worked out or developed.

As in is our plan to take Ellie home next week.

It turns out that the plan may have been premature, either by a little or a lot. Ellie's bowel has dilated(swollen larger) in the weeks since her last surgery (which was intended to make it smaller) and her ability to tolerate food has remained at a very low level she just isn't getting the kind of PERISTALSIS that she needs to move the food along through her GI.

On top of this, her weight gain has levelled off in the past few days and she is barfing a bit more than she has in the past. All of these are signs that things aren't stable and that it is probably not a good idea to send us home.

This has also made Abby and I rethink the course of Ellie's treatment.

Since Ellie's original surgical team continues to move towards an ultimate goal of STEP surgery and we are not in favor of this until we have exhausted all other options, we have once again consulted with another surgeon here at Children's. His remarkable ability to speak with us about Ellie's condition and explain different courses of action has prompted Abby and I to begin the process of changing surgeons, or as they call it here 'firing your doctor'. This is an uncomfortable situation to say the least, but something that we are both on board with to get Ellie back on track and do everything we can to avoid unnecessarily intrusive and irreversible operations.

What this means for us is more weeks or months here at Children's, another surgery or two and some anxious weeks as she recovers from surgery. At this point we are habituated to the life in the hospital as well as anyone could be and we are more than willing to go the distance to get her on the mend.

On the bright side, Ellie is comfortable, smiling, laughing and having a great time with us. she does everything that a 3 1/2 month old baby should do and it is great to be back spending time with her. We are very fortunate that her Omegaven treatment continues along as well as we had hoped and her liver is doing well despite her long-term TPN use. We count our lucky stars for our good fortune of being here at Children's and all that has come with it.

Sophie, I hope that you haven't scalped the Sox tickets for mid-August. It looks like we'll be walking to the game.


Sophie said...

No worries, the tickets are waiting for you. I imagine firing your doctor is not an easy thing to do with all the egos involved. While it means staying around a little longer it is obviously the best choice for Ellie. When I saw her last week she looked fantastic. Keep it up guys, the fall in Boston can be quite lovely and know that I am just a 15 minute ride down Memorial Drive if you need me! Abby, I am fully prepared to sponsor you for a day whenever you are ready.

Mike F. said...
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Mike F. said...

I'm sure your making the right choices.

Well, if you and Abby need to get out for the day, the whale watching has been spectacular on Stellwagen Bank thanks to the loads of available sand eels the keep them here. There are a couple of great whale watching outfits right next to the Aquarium (blue line).

Also, I know Wareham is a hike from Boston but if you are ever interested in fishing for some fluke of bluefish, let me know and I'll take a day off and we can go out.

Get well soon Ellie!!

The Flaherty Family

Barbara Krause said...

You've made such good decisions all along - you will keep on making them! Ellie will some day marvel at all the love and wisdom her parents bestowed upon her. Well, really, it's the wardrobe and bedding collection that are pulling her through - most impressive!

Hang in there, everyone. Team Ellie is with you.