Saturday, April 25, 2009

Hello Cipro, my old friend

After a few days of still feeling lousy and Ellie's fever still cranking along at 101, we finally made a call to Children's yesterday to see if they wanted to see her, change plans or let things roll. After a long talk with Dr. Jennings we agreed that since all of her blood work and cultures looked good, that it might be a GI bug again that needs antibiotics to treat Short Bowel Bacterial Overgrowth, SBBO, or a carpet of bugs that are growing on the insides of her small bowel, a relatvely common thing for short gut kids especially for those without their ileo-cecal valve to keep the bugs in their respective places.

We know that Cipro worked in the past and thanks to our friendly compounding pharmacy we were able to start it in the very special EB (Ellie Brogan) formulation last night.

The results so far have been amazing. No more fever, decreased ostomy output and a much happier kid after one night and a seeminly normal kid by this afternnon. Amazing.

We are going to tiptoe back into feeding her but all signs so far are that she is very hungry and ready to pick up where she left off a few days ago. We'll weigh in tomorrow morning to see if she slid back on weight and by how much.

Hopefully we caught it without much loss this time.

Today's fun was decorate your own donut day at Dunkin' Donuts. Ellie decorated well but had no interest in the donuts themselves.For her it was all about the sprinkles which she tried to drink out of the little dish before we caught her and scaled things back.

Mmmm sprinkles.

Friday, April 24, 2009

Still churning away

Ellie continues to show signs of some mysterious illness. Her fever continues to ride around 101, and her output into her ostomy has been increasing over the last few days to what is called dumping, a nasty little situation where more comes out than goes in which makes her continually in a hydration debt that we are struggling to keep up with trough her evening D10 infusion and her naptime top-off of D5. The thing that is the most alarming to us is that for the first time she is acting and looking like she is sick. Pale, sunken eyes and low energy are all things that are new to us.

After 72 hours of this we have made a call to Children's and it won't surprise me to be heading in sometime today. So we are watching lots of Blues Clues, changing a lot of ostomy bags and quietly getting our things together for a trip to Boston if we need to go sometime today.

Oh well. At least it isn't Barney...

Wednesday, April 22, 2009

So far so good.

She's home. Dr. Jennings sent us home to wait for the first round of labs. And we just got the call that everything looks good so far. She also sneezed a few minutes ago and a bunch of boogers came out. I have never been so excited to see snot.

I'm not happy that she will now have to deal with a bad cold, but at least all signs are pointing away from it being a line infection (knock on wood now please.)

So now she is off to my sister's house to have lunch and take a nap so that Gib and I can do some serious demo to our house. :)

102.0 F

Here we go again.

Ellie coughed a few times last night but other than that she has been fine. She got in bed with me this morning and I noticed that she felt like a small furnace. I checked her temp. and got 102.0. So Gib, Ellie and Karlene are on their way to Children's to see Dr. Jennings. They will get labs drawn and blood cultures started, then stick around for the white cell count and CRP.

We still have a ton of stuff going on at the house and about 7 workers here, so some one needed to stay. So here I am. We are hoping that is it just a cold and that she will be home by nap time today. But I did pack them an overnight bag just to be on the safe side.

So keep your fingers crossed for low CRP and normal white cell count. On the good side, Ellie is still her normal self. She danced her way to the car this morning and was very excited to go see Dr. Jennings.

Monday, April 20, 2009

News for the week

Last weekend was very busy for us. On Saturday we had a houseful for a third birthday party:

Mmm, Short ut friendly cupcakes and frosting....

and Easter:Egg hunts are always fun.

Super Ellie to the Rescue. On Easter...

To cap it all off Ellie had her three-year check up with her pediatrician. Although would like her to be growing and adding weight faster than she is, her size places her squarely in the middle of the pack for her age, 75th percentile for height and 5oth percentile for weight- long and thin. This a good news for us but also really great news considering where we have come from and the prognosis that we got on day zero. We thought about sending a note to her very first surgeon at Yale-New Haven but decided against it since they weren't so keen on out transferring to Children's.

To think what things would be like it we had not transferred....

The other news for the week is that we have a tentative date for Ellie' s next surgery, May 29th. The plan is to reconnect her bowel at this time and redirect the almost all of her bowel flow to her colon which will help her hydrate herself and ultimate reduce her dependence on her central line. Since we are all for tip-toeing through the process the plan also includes installing a surgical vent in her bowel to release gas and other pressure that might build up in the absence of an ostomy. She will be left with a much smaller stoma in her bowel that is controlled with what was described to us as a tiny version of her g-tube button that allows access to her bowel but can be closed. My Google search leads me to believe that we are looking at what is called a 'Chait tube'. But I could be wrong. Ellie has an in-person appointment late this week and we will know all of the details then.

The other huge news from the last few weeks has been the incredible transformation of our little house into a not-so-little house. We are still living in This Old House, but we can see the light at the end of the tunnel. Amazingly, we have only had to spend 2 nights away during the whole thing.

Here is what we started with. Two bedrooms, two bathrooms a lovely yellow color from the 70's:

Here is a few days later. Four bedrooms, three bathrooms and an upstairs on its way to being gray with real windows:

Things are still dusty and loud but we are getting there under the expert eye of Abby the General Contractor who is keeping everything organized and in line. This is another career that she could take on after Curator, doctor, nurse, and general badass.

But you can understand why blog posts haven't happened in the last few weeks.

I have to say that we are much better off with Abby at the reins than me. I think we would be living in a tiny house for decades if I were in charge. Ellie thinks all of the construction is great fun especially the trucks that deliver everything.

Her mother's daughter.

Thursday, April 09, 2009

Ellie's Birthday!!

Showing off the new bike
And she's off! She just got on and took off.
We quickly realized we will need another bike for us to ride to keep up with her.Ellie and Arnold the Pig

Wednesday, April 08, 2009

Happy Birthday Ellie!!

Ellie is 3 years old today!!!!

Her first birthday we stayed at home and didn't really talk to anyone about the event. Just us and a cake, that Ellie hated. We were told so many times that she might not make it to her first birthday, so when it happened I think we were afraid to make too big of a deal of it. Also, we were convinced that if we threw a party then she would be admitted and we would have to cancel.

Second birthday was a very small event just us and a cake, that she again hated. We went to my sisters for dinner the next night for a small celebration with family.

So this year rolls around and we decided to bite the bullet and throw her a party this Saturday. She is very excited and keeps talking about who will be there and that she wants cupcakes. I think she has talked more her cousin and family that are coming down, than she has about her actual birthday. Hopefully the weather will be nice, if not our house will be ready. Well... parts will be ready and other parts will be up for tours. We will see if she likes the cake we give her tomorrow or the cupcakes on Saturday.

Here are some fun Ellie tidbits for you:
  • When asked what she wanted for her birthday she said, "A baby sister."
  • She can sing along with The Wiggles and do all the same dance moves the wiggles do, while jumping on her trampoline. (She did not get this talent from her parents.)
  • She has been hiding anything roundish in size everywhere around our house and my sister's house saying that she is the Easter Bunny. Then she says she is Ellie and goes around and finds all the "eggs." Think she is excited for the hunt?
  • "Cool" is one of her new favorite words.
  • Lastly, she is getting a bike for her birthday, so stay tuned for pictures of Ellie on her new bike!
Happy Birthday Ellie!!!!