Update

Things are just....eh. We are still struggling to get her feed rate up. Shes been having issues with constantly going #2 and its difficult for me to tell if this is a problem caused by the feed rate, a general malfunctioning of her GI tract since shes been on a downward spiral, or her stealing food from the kitchen. I just can't tell right now. I would love to call our doctor and let him know how we are progressing with feedings but I really don't have an answer for him!

So to nip one of the three possibilities in the bud, I went up to Babies R Us today and bought an extra tall baby gate to block off the kitchen. Lucy was NOT pleased with the addition! Of course, neither are we, but at this point we've done as much as we can to lock up the food and she still finds a way to get food- even if it means digging in the garbage. I have a real concern she could eat something dangerous and its best to just lock off the kitchen entirely. Shes a persistent little girl!

That's about all I have for now! Thank you for checking in on Lucy!

Zachary's Belt Test Photos

Yep, he broke a board with his foot!-

Sparring-

And broke a board with his heel!-

Happy Thanksgiving!

Caught red handed

Me: Lucy, did you eat any of your orange play dough this morning?
Lucy: Oh, no, Mommy.
Me: *eyeballs fluorescent orange colored gastric juices sitting in g-tube* Are you sure? Is that the truth?
Lucy: *looks down at the obvious discoloration in g-tube* Ummmm, I think maybe I did. Yeah, that's the truth. I did, I eated it.

hahaha! She was totally busted!
Lucy is doing alright. We have been completely unable to make any headway with her feed rate at all. I tried over the weekend to get her up to 33 cc's an hour, but after 6 or 7 rounds of "the big D" I gave up. So for now, we sit comfortable at 30cc's while we wait for her GJ tube placement, which will hopefully allow us to move up her rate.

In family news, Zachary got his white belt in Tae Kwon Do last Friday! I have been meaning to upload pictures so I can show off. He was so nervous and has been working SO hard to achieve this, when he got it he just beamed. What a joy to see!! Zachary has low muscle tone and when we started TKD over the summer he could barely kick higher than a few inches off the ground without falling over. Going to TKD lessons weekly has really made a tremendous improvement in his muscle tone and given him so much confidence! I am so proud to see my little guy achieve his white belt!

Finally!!

Lucy's backpack is finally here!! When the FedEx man dropped it off everyone cheered, we were so happy to not have to lug that huge case around anymore!

We started trying to move up Lucy's rate and didn't get far. I tried 31 and at the end of the day she complained a few times that her belly hurt but I thought we could keep going. I tried 32ccs the next day and within an hour she was saying her neck hurt, her back hurt, her belly hurt, and her head hurt. She got REALLY irritable and I realized that we just couldn't keep going at that rate.

So I backed it down to 30ccs an hour and now we are diluting her formula down to 26 cal an ounce at 32 ccs an hour. So far its working VERY well. She's been running this way for a few hours now and so far no complaints!

We are praying we can continue to move her rate up enough to compensate for the diluted calories.

Thank you so much for checking in on Lu!! We appreciate all the prayers so much!

A Better Day

We had our appointment with Dr G this morning.

The X-Rays didn't reveal an obstruction of any kind, however they did show that her stomach isn't emptying well at all. It showed her stomach completely filled almost to the top, yet she was only on a feed rate of 1 ounce per hour, so in order for it to be so full she had to have been emptying pretty slow.

We spent much of the visit working through the math, trying to figure out exactly at what rate Lu would need to eat and exactly for how many hours a day in order to get in enough. Its impossible with her at a rate of just 30cc's an hour even if we go around the clock. So we are going to spend the next few days working to move her up just 1 cc a day in order to push her as far as we can. After that, we will probably need to water down her formula to a slightly lesser concentration so that her stomach will empty it out faster.

Dr G also decided that we are going to put in a GJ tube so that we can completely bypass her stomach when needed. The GJ tube will look just like the one she has now, only it will have a second port that is connected to a "straw" that will lead to a lower part of her intestine. This plan is a great one so long as her lower intestines are working well. We will just have to cross our fingers in hopes that her intestines function well enough. The GJ tube will be placed in a little less than 3 months, once her current tube site has healed. If we rush the surgery we run the risk of royally messing up her brand new tube site. So for now we are stuck working with whatever her stomach will allow until the GJ can be placed.

As far as Lucy's formula situation goes, its just not a good thing. The only options left out there are ones that she had failed about 2 years ago before, so we will be stuck re trialing them to be certain they are still out. I don't even want to know what our options are after they are out. I will cross that bridge when we come to it. Fortunately we just got a reorder of our formula and we are going to give it a shot again right before its gone. Hopefully, we will have enough to get us past Christmas.

Lucy is alright. Shes doing well. We're still running 30cc's an hour 24 hours a day and this so far seems to be her max. Tomorrow I will move up 1 cc, regardless, and if its not successful we will begin diluting her formula down.

I am exhausted after this morning, so I am sorry if this update makes little sense! I need to go to bed early tonight.

Thanks for checking in on Lucy!!

Oh good, more bad news!

Why on earth does that saying have to go, "when it rains it pours" ??

So today, I got news that Nutricia(the company that makes Lucy's formula) has decided to discontinue Lucy's formula.

They aren't even offering a comparable substitute. The substitute they are offering is a formula Lucy tried at around age 1 and a half and failed miserably.

So, needless to say I am scared to death of what lies around the corner here. Clearly, Lucy's body is already not functioning well and putting her through a formula trial right now isn't a good idea. However, I don't see a way around that. Nutricia announced that it will be discontinued by December 15th, which doesn't leave us much time.

Something else to discuss at our appointment tomorrow morning!

After a full day off the pump, I started Lucy back up this morning and she's doing alright. Shes had multiple episodes of diarrhea, but shes not completely wiped out in bed crying. I will take this as a triumph for the day!

Our super mini backpack for Lucy's pump still hasn't come in yet, which is frustrating. Big Zach got on the phone today to try and ream out a manager at our medical equipment supplier in the hopes we'd get one sometime in 2010. It didn't work. Lucy drags around this gigantic bag begrudgingly but doesn't let it keep her from playing, that's for sure!

That's all for now! Hopefully after our appointment tomorrow we'll have some answers and some direction.

Thank you for checking in on Lu!

Update 11/13

We got x-rays of Lucy's abdomen yesterday. She cried through the whole thing. Her fear of doctors makes just about any exam or appointment full of anxiety and tears. I cringe every time I need to haul her in for anything anymore. I wish everything would stabilize so we can just relax the way the tube was supposed to help us to relax. Things just aren't getting better.

Unfortunately, despite my medical degree from Google, I am unable to read the x-rays and figure out if she has some sort of abnormality. We'll be stuck trying our hardest to deal with things until Tuesday morning when we see Dr G again.

Lucy does great as long as she doesn't have to eat- by tube or mouth. Her stomach just isn't emptying right and I usually get stuck trying to empty out her stomach in the mornings when shes been hooked up to the pump. This morning she went potty and it was clear she just isn't digesting right. She keeps crying that her back hurts and she gags when she eats.

I feel horrible. She feels horrible. I am so sad to see my Lucy crying so much and so unhappy. I try my hardest to not be that "crazy hysterical mom" and be calm, but right now that's a struggle. Things were supposed to be so much better by now. She was supposed to be gaining weight and running me ragged with all of her new found energy.

Sorry this update is depressing and drama filled. I guess I am just tired. I caught a cold this week and with all this uncertainty looming overhead its getting the best of me. The two theories Dr G gave us about why Lucy is having such a hard time were not good- we're facing either an obstruction or a shut down of Lucy's stomach- neither are good news. I am still holding out hope that she can turn this around and things will normalize.

Hopefully my next update will be a lot more upbeat, with good news about Lucy's progress, I hope I hope!

As always, thank you for checking in on Lu!!

Update 2

Things still aren't progressing at an impressive rate for Lucy. Last night I noticed her belly was swollen and her belly button was actually stretched and purple around it. I thought maybe she had gotten constipated because ever since the surgery Lucy's entire digestive tract has slowed to a crawl. I got things moving well today, however her stomach remained "strange" looking. I took her off of feeds for a while to give her gut a break, but she remained unchanged.

I decided to try and see if she had a lot of gas building up in there, so I vented her and out came a LOT of old formula even though it had been quite a while since she had last eaten.

I decided to call our GI, Dr G, just to see if I had a reason to be concerned here.

He called me back pretty quickly and was concerned. Hes ordered an x-ray just to make sure there she doesn't have an obstruction, but he doesn't think she has one. Dr G is really concerned that Lucy's stomach has slowed to such a point. He had some ideas up his sleeve about where to go next, including placing a G-J tube in the very near future.

First, we need to get the x-ray and then visit Dr G on Tuesday to discuss things fully.

Thank you for checking in on Lucy! Please pray that there isn't an obstruction!

Update

We seem to be on a better track since this weekend. I cut Lu off the pump for a while to give her stomach a break and when she was up and moving around I decided to start her back on slowly. It was hard watching her feel so sick over the weekend that she didn't want to play or even move.

Right now I have her on 30mL an hour pretty much around the clock. If I push her any harder she lays down and starts crying that she needs to throw up. I am going to slowly try again to move her rate up every few days in the hopes this will improve. Even if we run her 24 hours a day on the pump, at 30mL an hour she STILL isnt getting enough calories.

To make things more complicated is the fact that our medical equipment supplier was dragging their feet trying to get us a super mini backpack(an appropriately sized backpack for Lu to carry her pump around in) instead of the adult sized one. Lu is stuck lugging around a backpack that is nearly as tall as she is and its making it really hard for her to get around. I took it upon myself to order one from another supplier on my own, and pay out of pocket so that she can have one within the next week. I hope it arrives soon!

Thanks for checking in on Lucy!!