Thursday, August 30, 2007

All present and accounted for again

Gus made his less than triumphant return this evening complete with a shaved belly, a shaved arm(for the IV) and one really big goofy cone over his head to protect him from himself. HE has a line of stitches in his belly but after a few minutes of sniffing around he was back to his old self and firmly in Abby's lap getting some quality time.

Ellie has had some very big days in the past week and has been all over the new neighborhood with her nurse Karlene each day. The park, the beach, the playground, tou name it and they go. It is great to be able to have the confidence that we have in Karlene to take care of Ellie's medical issues while also having a lot of fun with her every day- the Children's mantra of them being kids that are sick has found a home in Wayland.

The downside of this is that Ellie is ready for bed every day around 5:30. No kidding, down for the night tonight before I could get her saline hooked up at 5:45. And she will likely sleep on the IV until 6 AM. For some reason the fluids take it out of her and she sleeps like a rock when the pump is going.

The bright part of my evening was when Ellie woke up when she heard Gus's tag jingling as he came through the door. She woke up, looked at me and said as clearly as she ever has: God dog Gus. Then she rolled over and was out again.

She missed her boy. We all missed him and it is nice to have him back.

Tuesday, August 28, 2007

Gut Dog?

It isn't very often that the GI education that I have gotten with Ellie translates into the rest of my life.

Today was a little bit different.

It started last night with dinner. Ellie, Abby and I eating dinner. At the table like a real family which is still a little weird for me after all of those months of transient living. A nice meal including fresh local corn.

We finished dinner and I cleared out plates and headed to Wellesley to do some more clean up to make Mr Grumpy the landlord happy enough to give us our full deposit back.

About 8:30 I get a call from Abby.

"How many ears of corn did we eat?"


"Oh Shit. I knew he was eating something."

It turns out that Gus the Wonderdog thought that the buttery corn cobs that were in the trash were too good to pass up and ate two of them.

I knew that corncobs were bad for dogs and could cause intestinal obstructions and even worse things. So when I got home we gave Gus a few turkey basters full of Peroxide and watched him barf for us. Big chunks of corn cob.

We thought that we were out of the woods until this morning when Gus decided to barf for us three times in an hour, once on the rug, once under Ellie's highchair while she was in it, and once outside.

A quick call to vet and our sixth visit to the Wayland Animal Hospital this summer and I suddenly found myself talking to a vet about obstructions, resections, adhesions, anastomoses, contrast studies and KUB films. It took a few quizzical looks before I realized that I needed to clarify my intimate knowledge of gastroenterology to the nice guy and gave him the cocktail party version of Ellie's story.

He was pale by the end even when i told him that she is great.

In the end Gus became an emergency inpatient and had surgery early this afternoon to explore his gut and remove any pieces of cob that may have lodged in his bowel. Apparently the little fingers in the bowel and the sockets in a corn cob fit together like velcro and clog up the works.

The report this evening is that Gus has a clear bowel and was recovering nicely without any need to open his bowel or do any resectioning. This is good because the thought of a dog with a g-tube is just too much to handle even if he and Ellie would be very cute with matching buttons.

We hope that he will be home in the next couple of days.

It is lonely around here without our boy and the floors are an absolute mess without him around to lick up after Ellie.

Monday, August 27, 2007

Officially In

My sister pointed out on Saturday as I loaded a bag of TPN into the refrigerator in our new house that if the TPN is here, then we are truly moved.

Yes, the PN is here, Ellie is here and so are we all.

Saturday's move was smooth even if it was significantly bumpier and hotter than last fall's move from CT. We had lots of help but didn't have the time or organization to pack very well. Because of this, we ended up with a ton of loose odds and ends to move which made everyone's life a lot harder but we finally got it done. By 2 on Saturday (at 96 degrees and sunny) we were done with the U-Haul and have begun our unpacking process.

It is great to be here and start settling into to our not-quite finished project. The kitchen is a mess and there are parts and tools and pieces of projects around every corner but we have lots of clean and finished space for Ellie to run around in.

Settling in will take a while after we finish up our big projects but for now we are functional and happy as can be. Ellie thinks that the sink is great fun and can sit in it while watching someone on the other side.

This makes washing up after her eventful meals much easier, if a little wet:

Tuesday, August 21, 2007

Dress Up Time

Ellie thinks that a fresh load of laundry is great fun and has been 'helping' us fold it for some time now. At the same time, she is learning to really help us get her dressed and today she finally put 2 and 2 together to use a fresh load of laundry to play dress up.

I turned around to play with Gus and found Ellie like this climbing into one of my XXL t-shirts.

Little girls and huge clothes are good fun:

Daddy, your clothes are enormous!!!

Aren't I cute?

Then, I encouraged her and got her into a full out fit of her mom's clothes:

These shorts are too big, but great fun.

But adding one of Mommy's shirts makes it even better...

This all goes along with her game of hide Mommy's shoes. We have found Abby's shoes in the closet, the kitchen cupboard, the filing cabinet and the TV cabinet all in the past few days.

Sometimes, she just wears them:

Monday, August 20, 2007

Crunch time

We have just under a week until we move and things are respectably hectic around here as we do everything to get work done and the new house in shape to move in on Saturday morning.
I feel like one of those silly shows on cable TV that adds dramatic music to emphasize the impending end of the work.

We have a string on work scheduled for this week to piece together the mess that we have made of the center of our house. The floor guys are there today and tomorrow, the electrician will be there Wednesday and then it is just a matter of rebuilding and painting a new wall, hanging some cabinets and giving the whole place a nice spit and polish.

Hopefully we will be able to spend Friday night just cleaning up. Yeah, right.

Oh yeah did I mention that Ellie's nurse is away on vacation with her kids this week?

That makes me a Mr. Mom worker again after a month of blissful nursing help.

Abby is the drywall mud covered laborer.

Ah it's good to be the desk guy sometimes....

Then on Saturday at 8 we get a U-Haul and move down the road. My father, brother and two sisters are coming for the day and will be a big help and Karlene, Ellie's great nurse, has volunteered to work on Saturday so we can do work and not worry about her medical stuff.

It will be a push to make it happen but we will find a way. The finished parts of the house look really good. It is just a matter of bringing the other parts along to match.

If you aren't doing anything on Saturday morning......

Thursday, August 16, 2007

A big week and Clinic

Today we had another appointment with the Short Bowel Program clinic. This is their chance to check up on Ellie, look at her plumbing, and officially monitor her weight. It also is the chance to adjust her TPN and discuss her diet.

The take home message to day is that everyone continues to be very happy with her progress. She is holding on to her spot on the 50th percentile for height and weight and is still off the charts in head circumference (because of the giant, fish oil-fueled brain that is in there).

The other big news is that our progress towards TPN independence is continuing at a fast clip.

A month ago we went to clinic and agreed to take a second night of TPN away from Ellie as an experiment to see if she would still grow without the extra nutrition of full TPN. She did grow over the last month and today we agreed to peel another night away as another month-long experiment.

This leave us with four nights of full TPN (fluids plus omegaven) and three nights of just IV fluids each week. Yes, we get to stash the IV pole every other night now and have a girl on just one small pump.

We are almost to the halfway point.

This is big for us and we hope that she continues to gain weight and height with this plan.

Another sign of her ever expanding dimensions is the fact that her cute purple Mary Jane Crocs don't fit anymore. Our stop at Whole Foods on the way home fixed this and Ellie is very happy with her new fancy treads:The last week has also been a big one for short gut. Connor and his family moved here just for Omegaven and last week they went back home because his bilirubin numbers were back to normal. He's eyes are white and his skin is a beautiful white. Also Nora in Florida just got on to Omegaven in Florida! We are keeping Nora's family in our thoughts because the first month can be scary as the usually the bili numbers go up before they go down.

And lastly, Christian, Ellie's playmate from last spring, had his ostomy reconnected last week. This means that they connected his transplanted small bowel(from last December) to his native colon. He is out of the hospital and doing great! They are hoping to return to New Jersey again next week.

We have been keeping busy here working on the new house. Here are some pictures of the our progress. First, Ellie at Home Depot, our second home. They really should call the place Home Debit.Here is one of our rooms off of the Kitchen, before......
And after.
We are not done obviously, but we are getting close. We are in the final stretch or race to the 25th when we move in.

A special thanks to Karen and Ingrid who flew in for a week of hard work, paint that just will not come off your skin and some good times sailing. The nice new blue color in the room off of the kitchen is complements of Ingrid and Claire. Here is Karen and Ellie going for a walk. We are able to complete all this work on the house because of our new wonder nurse. She is great and we know Ellie likes her because she squeals and runs to the door to greet the nurse every morning.

Tuesday, August 07, 2007

A different kind of Happy Birthday

Today marks the one year birthday of Ellie's central line:

It is a big day for us and a personal accomplishment for both of us who have fought hard and remained very ansty about her line. Given all of the liabilities and unclean things around her line (including but not limited to lots of runny baby poop) it is a bit of a miracle that we have made it last so long without any significant infections and only one repair. We are very lucky that we had great training and a healthy dose of serious talks about the line before we left the hospital so we treat it very specially.

Now that I have said this, please knock on wood for us and think clean thoughts about her little life line.

It looks like we will need it for another while until her eating catches up with the rest of her.