The third floor

Ellie and I had to go to Children's yesterday for a blood test and to get more Omegaven. On the way to the basement while we waited for the elevator, Ellie looked up at me and told me, "I don't like the third floor. That is where they put the tube in my nose."

The third floor, for those of you who haven't been to CHB, is the floor with the operating room, where yes, they do put NG (Naso-Gastric) tubes in her nose as part of surgery.

Ah, the joys of a very aware kid with medical issues. When we discussed that we also see Dr. Jennings on that floor, things got better very quickly.

Sometimes you have to wonder what she really remembers of all of her time in the hospital.

This goes along with her Thanksgiving discussion with her Grandmother about a picture that she drew in the hospital in September that is framed on the wall: "I drew that in the hospital when I was in the big fluffy bed with the table that goes across."

I'd like to know what that shrinks would say about her hospital stories.

A Post Free Month

We realized yesterday, with a little bit of help, that it has been more than a month since we have updated this blog. We would like to say that this is because our journey with short gut, tube feeds, Omegaven, central lines, g-tubes, and the rest of our average day has come to some sort of and end. Unfortunately, we can’t say that. In fact in some ways we are further away from an end than we have been in the past.

Apple picking

Hiding in the apple trees

I guess that things are so busy right now that updating this blog just falls off the list and by 10PM we just don’t have it in the tank to update things. I guess it is very similar to what got me into this blogging to begin with: I hated telling stories about Ellie and her condition without any emotion after the third phone conversation. The blog was great to share a best shot at an update and give everyone the best version. Now writing about Ellie’s very, very slow progress seems to be the same kind of thing.

Finding that perfect pumpkin

Her progress has been slow but good. We are back down to only 3 nights of TPN/Omegaven and only 1000mls a night. She has also been eating really well. We have found that when Ellie is eating well and tolerating her food well, we feel like the sun is shining even when it isn't. When she isn't, well then there seems to be cloud over everything. Lately it has felt pretty sunny around here.

Some highlights of the last month:

Potty Training- Ellie has decided that the toilet is a great thing all of a sudden. She rarely poops in a diaper anymore and is working on the pee when she isn’t overwhelmed by the IV infusion overnight. Unfortunately for us, that means one of us (most often Abby because Ellie likes to poop with Mom) is up for the day most days around 5AM. But on the upside her bum is very happy to be clean and even the most acidic short gut poops aren’t too bad for her. Now if we could get her to move to the toilet for peeing we would be in a really good situation

Fetch at the beach

Halloween- This year Ellie was a lady bug for Halloween. She really wanted to look like a "Real" lady bug so we broke out the sewing machine and turned her into a lady bug.

Pneumonia- For the last month we have been dealing with a nasty cold that has made the rounds among all of us. Ellie got the worst of this and last week ended up with what we like to call ‘running pneumonia’ last week. Running because even with lungs that ‘crackle’ she never slowed down, not once. Through the whole thing she lost a pound, one of those great pounds that we were so proud of her gaining after last summer.

We also learned that even bronchitis/pneumonia is a serious risk for kids with a central line because of the possibility of the bugs migrating into her central line. It is such a risk that we spent a night last week in the ER getting line cultures drawn and starting a cocktail of IV antibiotics. In by 7PM out by 3:45AM. Have I told you how much I love the portable DVD player? All cultures were negative and she back to her old self.

Pre-School- Ellie absolutely loves schools and the three mornings a week that she and her nurse Karlene go to pre-school are the highlight of her week. Even though she felt fine, her progressing pneumonia kept her out of school for a week and a half this month. We just couldn’t ask parents to keep their sick kids home to protect Ellie and then send her to school with an awful cough. Today she went back and never missed a step.

Over all she is doing great and very excited for the holidays. We are heading up to Maine for the first time since the middle of this summer. We promise to update more often!

Yup, she's a Brogan alright

At 6:15 tonight, Ellie and I adjourned to the bathroom for her evening ritual: a good try at a poop on the toilet with a book for good measure, wash hands, brush teeth, rinse with flouride and off to get hooked up for her evening infusion and bed.

I had gotten one sentence into My Brand New Potty when she stopped me and told me, "No daddy. When there is an exclamation mark at the end, you need to Yell! Not just talk."

She is 3 1/2 and already a grammar Nazi with a need to read a book to poop.

Yup, she's with me.

Today she weighed in at 16.09 kg (35.4 pounds). That is a pound above her weight at clinic last week when we made the plan to go to 4 nights a week of TPN and 3 nights of saline. She is noticeably heavy. All good signs.

We hope that this aggressive weaning will encourage her appetite and thirst which will then move things along and let us wean some more. We will give this a few weeks and see how it goes but for now we are back to three nights a week without our old friend Omegaven. It is remarkably liberating to only set up the bag of fluids without the splitter or the Omegaven pump.

Place your bets, place your bets. Says my daughter.

Update October 4

We realized tonight that it was September 12th the last time we posted any news. That is the result of a combination of things but mostly due to a combination of a busy new schedule, some work travela nd a nasty round of colds, we have been choosing to do other things like sleep when we have time rather than logging our lives. So shoot us. Winter is coming and then things will be cold, white and slow. Also I think that things were going so well we were afraid to put it in writing for fear that we would jinx it.

Not so sure of What to Think About the Scare Crows

School has been great for Ellie. Tues, Thursday and Friday Mornings she and Karlene get dropped off at school. Ellie goes to class and Karlene hangs out a full floor away but just a phone call away, in case anything goes hinky that the teachers can't deal with like a problem with her g-tube, her belly or worst of all, her central line. The kids are great and it is wonderful for her to get out and see other kids and teachers.

Apple Picking with Friends from Florida

The school also sent home a letter to all the other parents letting them know about Ellie and her short gut. It explained that a GI bug is a very big deal for her and asked the other parents to please be extra aware of this and not send to send their kids to school if they may have a bug. It also asked that the parents let the school know of any illnesses so that they may inform us. Them we will have the option of not bringing Ellie to school that day.
The director then will let us know as soon as she knows when a kid is sick, even telling us a week ago about a kid who had thrown up while Ellie was in school to give us the opportunity to come in and take Ellie home. We have also gotten a call a couple of times the afternoon before Ellie is scheduled for school with a health update which has led us to keep her home just once so far. Stomach bugs are a bad thing these days and we would rather have one day of home school than a free inoculation of gastroenteritis. As always, her teachers are very good and brave (even changing short gut diapers) but we are all happy that Karlene is there just in case. Peace of mind is priceless.

Ellie continues to ramp up in her feeding and less than a month after being discharged from Children's. She is back to eating a limited diet of soft foods, drinking about half of the formula that she was drinking before her troubles this summer and has surprised all of us by gaining a surprising amount of weight. She is 1 1/2 kilos (3.3 pounds) heavier today than when she was released in September. This week her weight gain earned her one night a week without TPN. We are starting on the road to a TPN free life. Again.

Touch a Truck Day

We have been leery of putting her on her feeding pump because it doesn't provide any feedback as to when she is full, like oral drinking will. We understand that constant exposure to formula is the best bet to encourage intestinal adaptation but right now we are still recovering from her dilation and don't want to aggravate her bowel with an unrelenting pump inflating her bowel. One of these days we will get brave and start the trickle of feeds from the pump but right now she is doing quite well eating and drinking when she wants to.

Perhaps the best news is that she is finally pooping quite regularly for us. Five or six times a day is the norm which, believe it or not, is thrilling for all of us. Lots of poops means things aren't backing up and her dilated bowel is likely recovering and getting its strength back. We will run with this for a while and then can start considering methods to slow her poops down but for now, let the poops come!

Other than that we are dealing with regular kid things, timing flu shots, and having great fun with our girl. Things are slowly returning to normal.

LOOK!!

Look! It's a bird....

It's a plane....

It's SUPER ELLIE!!!

On her first real day of preschool.

This is her silly face, it is the face of choice right now.

Things are pretty much the same. We are enjoying or week off of med stuff. We hope the "nice and slow" approach is working. But, we will call Dr. Jennings on Monday to review. Until then we are having a great time and enjoying things just the way they are.

Tomorrow we are going to walk in the MitoAction Family Walk to raise awareness for Mitochondrial Disease. We have met many amazing kids and know many strong families who's lives have been touched my Mitochondrial disease and this is the way we can help. Check out the MitoAction home page to learn more. Our team is called U-Thrive!

Congrats to Liz and Hank on their new baby girl!!

So an NPO kid goes to preschool....

Week one of preschool has been a smashing success for Ellie.

In the words of one of her teachers, she is 'a joy'. It's nice to know that someone else is a as big a fan of our girl as we are.

Ellie still isn't eating and is just barely drinking anything each day. She drinks about 3 ounces of elecare a day along with about an ounce of water. Some nights we see significant residuals in her stomach and some nights we don't. Go figure.

Having an effectively NPO (Nothing by Mouth) kid at preschool was a concern for everyone. Eating is a big part of the day in a half day preschool since snack is part of the the schedule. What would she do if she can't eat? Sit in the corner with her finger in her nose?

Come to find out, at this preschool, in addition to having some great teachers who seem to 'get' Ellie, their daily schedule is built to have a 'free form' snack on the fly. Whe she is ready to eat she can but for now she can keep on moving striaght past, or, as one teacher suggested, stop and have a 'special snack' of ice chips. Gotta love professionals.

So this worked out the typical days at preschool, but what about special events like birthdays?

No need to worry. Leave that one to Ellie, (who is not quite 3 1/2):

Yesterday was a birthday for a child in her class. The parents brought cupcakes. Even though she doesn't really like sweet things, she loves the idea of cupcakes and had even eaten a tiny bit in the past.

We were all were dreading this and Abby and I have discussed this with her teachers about ways to talk about it and distract her. we were all prepared for a meltdown when she couldn't eat just like you would expect when you tell a preschooler that they can't do something that everyone else is doing.

Come to find out that when the cupcakes came out, Ellie looked at her teacher and said, 'I like cupcakes. But my belly isn't ready for them yet. I think I will have some milk and some ice chips instead.'

She isn't 3 1/2 yet! At 36, i would be screaming bloody murder for my damned cupcake but Gut Girl gracefully took a pass and moved on.

Unbelievable.

Morale Booster

With all of the lousy news that we have dealt with this summer and in the past few weeks, someone asked us the other day how we get through the long process of getting Ellie well again?

To this I offer exhibit A, Ellie's first day of preschool:

She is, quite simply, a glorious kid.

That goes a long way to offset the malfunctioning gut.

Patience

We are home. Just barely, but we are home.

The stomach residuals are back.

Why this is happening is open to speculation. It may be the case that liquid isn't passing down from her stomach to her small bowel. Ot could also be the case that things are sloshing up from below. These are two crappy options and the cause has given us more than a little bit of anxiety over the past 24 hours.

Is it simply her gut taking an extrordinarily long time to wake up?

Is something still wrong anatomically that wasn't fixed in this past surgery? Is there a section of her bowel that is 'stupid' and screwing things up for the rest of her bowel? If it is anatomical, can this be 'fixed'?

Or is it one of those mysterious things that causes some short gut kids to simply stop eating altogether? we know some kids with short gut that fall into this category, an example of a case where knowing too much isn't always a good thing.

We are a long way from making any calls about the reason behind this slow recovery but we are learning that this recovery is taking a lot longer than it has in the past. We have been in touch with her surgeon this weekend and are already making plans for the next steps.

If only it could have been a simple fix...

So we are home. For how long is anyone's guess.

Just in case, we spent a glorious day today having home time with as much fun as we could squeeze in.