Yesterday was Ellie's monthly clinic visit to see the Short Bowel Team at Children's.
We followed the advice of another trusted short bowel mom and scheduled the last appointment of the day, 4 PM hoping to get here late when people are done with their distractions and can deal with us. We're not sure of this approach but it was just as good as the other times and we didn't spend an entire day at the Hospital as we have for earlier clinic appointments.
They measured her height, weight and head circumference-9.45 kg, 21.70 pounds, 29 inches long, and a giant melon for a head that is filled with Omega-3 brains. In fact, her head is so big (how big is it?) Her head is so big that she needs to wear a size 2T hat to fit into it now. Abby and I both have big heads so she fits right in.
Then we spoke to the doctors. The surgeon, the GI doctor, and the TPN guru. They are very happy with her progress. So happy that they have peeled away another night on TPN from her week. We will now have her on just IV fluids two nights a week. We will need to separate them in the beginning to make sure we don't get a dip in her blood work but two nights of fluids is a lot easier than PN. They even told us that she had a reserve of nutrition. Imagine that, our girl has money in the bank. Or more appropriately fat in her thighs, but I will take it.
Since Ellie is treated by both the Short Bowel Program and her surgeon, it is funny to see the reactions of the same doctors that refused to do the ostomy procedure when they see Ellie's success with an ostomy. There is no skepticism or stern warnings now, just lots of success to go around as her bowel has come down in size, started to move food though, and she is up to round the clock feedings. Sometimes I want to ask them about their feelings on our choice of treatment but for now we will all feel good watching our very pale good sized baby who giggles and plays peek-a-boo with her mom in the hallway.
All signs are good. If we could just get an angry tooth to finally poke through, we would be in great shape. That will happen any day now.
This is the story of Eleanor Brogan who was born in April 2006. She was born missing 90% of her small bowel and 20% of her large bowel. This made her "Short Gut" or "short bowel", hence the name of the blog. Currently she is being treated by Children's Hospital Boston. She was the 23rd child to go on the new lipid for TPN, called Omegaven. Which has saved her liver, kept her off the transplant list and we believe saved her life.
1 comment:
Congrats! She is amazing. When people say our little guy is chuncky they don't realize it's the nicest thing they could say to us. So happy for Ellie's two nights off. Great job.
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