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!!

I guess I jinxed it

I should have known. The second I call it "great" things would spiral downhill. Why does it always work that way?

Lucy up and took a turn in the opposite direction literally minutes after I posted last. She has been up ALL night the last few nights, crying and moaning. The last two days she hasn't moved from the bed and rarely smiles. She says her head hurts, her neck hurts, and when she eats, her belly hurts. I took her off the pump last night hoping this morning would be better once she had gotten a break, but nope. I put her back on the pump late this morning to get caught up on her calories, but after running it for a few hours she threw pretty much all of it back up. She started to perk up after that so I am hopeful tomorrow will be better.

As a matter of fact, let me jinx this in the other direction- Tomorrow won't be better. There, that should set things right.

You know your brother talks too much...

Zachary talks A LOT. Like all the time. And he really doesn't care if his audience is interested in listening or not. Maybe its just a part of his personality, maybe its part of his Autism Spectrum Disorder, I'm not sure. Its just a part of his quirky little personality. He follows everyone around the house yammering on and on and on and doesn't even notice when the person he's talking to hasn't responded in 20 minutes. We've tried to explain the concept of paying attention to your audience to ensure they are interested in the topic of conversation, but it just seems to go out the window when hes got something he wants to say. Sometimes we just have to laugh about it because it can be quite comical.

Lucy, on the other hand, grows tired of hearing about Legos, Star Wars, and all things boy. After all, she's three and an impatient 3 year old at that so the amount of time she's actually willing to listen to it all isn't nearly as long as Zachary would like. She's tried being polite, with the simple "Please stop talking." but he keeps going. Shes tried coming up with excuses like "I have to go to the bathroom." but he just follows and talks through the door. Shes also tried getting nasty with "SHUT UUUUUUUP Nooooow!" but that results in a lecture from Mommy about speaking respectfully. So recently, shes figured it out. The perfect solution.

She simply pretends to have fallen asleep. No matter what she is doing, she simply drops with her eyes closed and pretends to have completely gone dead to the world. And this works. Zachary instantly goes "Awww, Mom! She fell asleep! I didn't get to finish my story!" and then runs off somewhere else. Lucy opens her eyes with a devilish grin and goes right back to playing- enjoying her quiet.

If you're looking for an update on Lu- She's great. Really, you'd never know this kiddo had surgery a week ago! I've had to slow her down to keep her from hurting herself!

Update

Lucy is doing GREAT! I am actually having a hard time getting her to slow down and rest!

On Monday she was really sore and had a hard time moving around, but insisted on doing it all by herself. She would take 20 mins to get on the toilet if she had to, so long as she could do it by herself. She refused to take any pain medication (but hahaha, now Mommy can just stick it in her tube!) and asking to go to the park all day.

Today, she was running around and climbing and jumping- scaring the heck out of Mommy! There is absolutely no stopping this girl that is for sure! You'd never have guessed today that she had surgery just a few days ago.

We're Home!

It feels so good to be home! The hospital is no place for rest that's for sure!

The surgery went extremely well. Things went in without a problem and the only issue the doctor had was that Lucy's esophagus was fragile and bled easily. We really lucked out and the head of the department ended up doing the surgery and taking charge of Lucy's care for the first 2 days we were there. You just can't get better treatment than that!

After surgery things took a downhill turn. Lucy came out of surgery highly agitated, which can be normal, but after that her vitals starting looking pretty bad. After we were admitted and taken to our room, Lucy continued to get worse- her O2 levels were in the 70's, her heart rate was high, respirations were high, and she had a rising fever.

She looked awful and I had a moment where I was ready to break down out of fear that I had made the wrong choices for Lucy. Watching her deteriorate was frightening and I wondered if I had made a huge mistake by submitting to the surgery. Doctors and nurses continued to come in and out and were really concerned that something was very wrong. They said that if she got any worse or if she failed to show marked improvement by morning that things would be considered pretty serious. They debated back and forth about whether or not to get additional tests up and running throughout the afternoon. She ended up on oxygen and needed 3 boluses of IV fluids before she finally even urinated. She felt awful and was terrified.

By around nightfall she had stabilized and by midnight she was on 50% room air, by morning she was off the oxygen. It was quite a wild ride! I have never felt such a relief in my life to see her come off of that oxygen.

After that the next couple days were filled with meetings with the GI team, nutritionist, and trying to figure out a correct feeding schedule in order to fit in enough liquids and calories. The overall concern was hydration. Lucy is chronically dehydrated and its been slowly wearing her down, but at the end of the day her stomach can only handle so much volume at one time which makes it very hard to fit it all in. We attempted a larger bolus feeding of 7oz but that ended up making Lucy sick so we had to limit her to a max of 5oz at a time.

Now that we are home we are still working on what works best to meet her feeding goals. Its kinda like having a newborn baby again- I feel clumsy, awkward, and unorganized. I know it will get easier with each day though. Most of all I can't wait to see her sunken eyes disappear and her rosy fat cheeks reappear!

Lucy is doing pretty well. She was up walking around today and by evening has been insistent that she do almost everything without help. Shes stubborn and its working in her favor right now! She even got up and went across the street to show our neighbor her costume for Halloween!

Thank you all for the messages of love and support!! We could truly feel all the prayers! There is no way we could have made it through this week without our family and friends.

One Day to Go!

We've got just one day to go before Lucy's g-tube placement! I am soooo stressed about it! I've had a tension headache for 2 days now that just will not quit! I am ready for it to be Friday so that the procedure will be over and Lucy will be resting in my arms again.

I have done everything I can to prepare her and myself for the surgery but at this point there is nothing left to do but wait.........and when I have to wait I just over think the heck out of the everything and drive myself insane!

I had been feeling pretty numb about the whole thing until the sudden realization hit that Lucy's belly will never ever be perfect again. I know that sounds crazy and I don't want to sound overly dramatic about things. But a 3 year old's tummy is just so soft, round and cute. Every parent blows countless raspberries on their kiddo's tummy to hear their squeals of laughter- but, for Lu, that perfect belly will be no more. Its frightening to think that in just another day she will be swollen, red, and sore around a new hole in her belly. I am dreading the first moment that both her and I see it. I dread having to see her afraid and upset when she sees her "new" stomach. I dread knowing that such a traumatic event is in Lucy's very near future.

At the moment, Lucy actually seems to be looking forward to it, excited to be able to "eat" in her sleep. I'm sure once we are in the hospital she will change her tune though. I went to the store and bought several prizes to reward her with as soon as we are back in our hospital room after the surgery. I figured I had better be prepared!

I am going to spend the time we have left before the surgery remembering that every state is only temporary. Thursday will be an extremely difficult day for Lucy, but by this time next week Lu will be up and smiling again here at home.

Preparing

A couple of years ago I made friends with a woman, M, that I had met in a support group for children with no foods. We had both been members of the group for a while before we realized that not only were we from the same town, but that we lived right down the street from one another! I remember thinking "Wow! What an incredibly small world!" We are used to being so very out of the ordinary where ever we go and to think all that time a fellow no food kiddo could have been standing in the checkout line next to us at the grocery store.

Her and I arranged to meet up, and chat in order to share our experiences over dinner and vent our frustrations a little. We've been doing this for a couple years I think now and its always a wonderful break. Talking with another mom that has all the same worries and day to day stresses that we do is something neither M or I get to do often.

M's daughter, R, is nearly 7 now and Lucy seems to always end up falling in R's footsteps. I joke with M that our friendship is so one sided since Lucy goes through much of what R does, but a few years behind. I end up learning from all of R and M's journeys and its been incredibly helpful.

R got her g-tube a while back and so the second I knew we would be getting one I made arrangements with M to stop in for a "tubey playdate". Lu played with R and got to see what the actual button and tube would look like, see that R was a perfectly happy, normal girl, and I got to hang out with M and learn all about the technical side of things. I feel 1000 times more reassured having gotten a hands on tutorial from an experienced tube feeding parent.

But what is most reassuring is to see R. She is a happy seemingly normal little girl, chattering endlessly about Zhu Zhu pets, playing with dolls, feeding her pet rabbit, riding scooters on the sidewalk. The fact she is no foods, often sick and in pain, and on a 24 hour a day feeding pump seems of no matter to her. Sure, she certainly has bad days- but when she has good ones they are filled with playdates and happiness, not sulking and crying because her life has so many challenges. On a day to day basis she doesn't dwell on the unfairness, feel sorry for herself, or get angry with everyone else for having food. She just keeps moving forward, enjoying everything she can.

This is the future I hope for Lu.