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.

Let's try this again

A tiny residual at midnight and none at 8AM.

It seems that things are getting in gear and the lack of things in her stomach this morning is a very good sign.

We are heading home today and will manage her bowel recovery from home.

Spoke too soon?

Ellie did great with the ice chips and sips yesterday and last night we hooked her up to her enteral pump to pump in a ounce over night. Yes 1 ounce pumped in slowly over 7 hours. At 4:30 she woke up, pooped and asked to be vented.

Her belly pushed out over 2 ounces of fluid. Not good.

This means that she held on to the 35 we gave her and either produced another ounce of her own fluid or more likely fluid that was backing up in her intestines pushed backwards into her stomach.

Still not good.

So now we wait for rounds to discuss where we go from here. But most probably it will NOT be home.

I can't help feeling that this is our fault, we told everyone we were going home, we told Ellie, we told our nurse, visiting friends, and had ThriveRx come in and do a evening teach on how to do antibiotics at home. We should have known better.

HOME is the worst 4 letter word I know. If you say it too much you will regret it.

Ellie and I are hanging out watching Sleeping Beauty, again. She is happy and currently pooping, so things aren't all bad.

Doing well and going home?

Ellie has been doing much better in the past two days. We got the right sensitivity for her UTI and weened her off of all pain meds. She has been up and moving. We took a big wheel ride to the garden and playground yesterday and today she has spent most of her time in the playroom.

We talked to Dr. Jennings about "the plan" for her feeds. He wants us to do as much by mouth as we can. Then supplement with the feeding pump. The goal at this point is not to ramp up her feeds and get off of TPN, it is let her bowels wake up and recover from the insult of the stricture. After a week or so we will start pushing and see how she does.

We thought we would be doing a slow ramp up over the weekend and then go home on Monday, but after talking to Dr. Jennings this morning, we are looking at tomorrow morning as our possible discharge.

We were surprised but also very happy. Hospitals are dirty places and we would like to get out of here before she picks something up. We do have to go home on IV antibiotics for her UTI. IV antibiotics since she is not really eating yet, and because at this point she may not absorb enough to make them work. This means we need our first "teach" on how to do antibiotics at home. Everyone was shocked when we said we didn't know how to do it and I think we have knocked on wood 50 times already today when we explained why.

Ellis hasn't eaten in 3 weeks so her bowels are going to need time to get moving, and time to regrow all that fantastic short gut lining of her small bowel. ( the absorptive layer of short gut bowel can be 3x the thickness of typical bowel) Give her a few weeks, and assuming this surgery was successful, then she should be back to her old self. I am very excited to get her home and do the recovery at home.

School starts next week and we have not been mentioning a date since we didn't' know if she was going to make it. But things are looking like she will be starting school with all the other kids. She may not be eating, but she will be there.

I will update when we know more.

Progress

In the past two days we have seen steady progress in Ellie's recovery.

She is very close to being disconnected from her bionic partners altogether. Her epidural is gone, the heart and breaqthing monitors are gone, her foley catheter is gone (leaving just a uniary tract infection as a souvenir), the NG tube in her nose is gone (leaving just a nasty red sore on her nose):

,

The drainage bag for her g-tube is scheduled to be removed later today. If we can get away from the post-op iV fluids during the day and back to good old TPN at night, we could, in theory have a FREE GIRL sometime soon.

On the GI front, she seems to be tolerating her own digestive juices well which is a good sign and has even had some ice chips.. No bloating or distention. We think that a day or so of clamped g-tubes with nowhere for the fluids to go but down and we could start clear fluids- the first step towards feeding again.

This means that she can also brush her teeth again and use the fancy mint flavored sponge lollipops to wash her mouth.

Pain is still an issue and we are struggling a bit in the transition from very low doses of heavy narcotics like Dilaudid (which I have learned is 10 times stronger than morphine and 5 times stronger than heroin) to more conventional pain meds like tylenol. The trick is timing the weaning process to keep her happy. This sounds easy but sometimes pain comes at the four hour mark and sometimes at the 7 hour mark. The good news is that, for the most part, she is on long intervals between heavy meds.

Onward and upward. Gotta go play princesses with my girl.

Poop For your Birthday

Normally this does not sound like a good birthday present, but for Gib...It was perfect.

He said that Ellie woke up this morning, farted and pooped. YAHOO! This means the NG tube in her nose can come out and she can start taking little bits of clears by mouth. This will is a huge step in the healing process. Sounds like a great present to me.

Happy Birthday Gib!!!