Update 2

Lucy had a couple successes today. She got to have ice AND she got out of bed to walk....run, jump, climb, and otherwise act like she didnt just have surgery 2 days ago. Her surgeon was impressed.

She is probably pushing herself too hard, but we will see. Shes tired but refuses to give in. She is still her snarky self. This afternoon a couple of clowns came in our room, and about 3 minutes into their act she told them they needed to leave. :)

She was easier to handle when she was knocked out on morphine, but I'm still happy to have my spunky girl back.

Her pain is well controlled and her stomach is draining well on the ice. The plan for tomorrow is to access the new j-tube and begin pedialyte slowly.

Update

<p>I've been doing my best to keep things updated on facebook. I'm on my phone so its easier there. I will update here with details as I am able.<br>
Surgery went well. They were able to complete things laproscopically, which means less scarring among other things. Surgery lasted about 3 hours and her surgeon was pleased. Things went as well as we could have hoped.
Last night Lu struggled to void her bladder. They don't like to see her go more than 6 hours, and after 12 she still hadn't gone. So, literally as they came in to put in a cath, she released just enough to make the nurse happy. She did fine through the night so it seems her bladder was just slow to wake yesterday.
Today Lucy has already been in quite a bit of pain. She has a morphine pump for pain and we are still struggling to gain control. Hopefully we can get this fixed for her.
The plan is for her to rest for several days, then gradually begin feeds. The earliest she will be out is Monday, if there are no issues.
I am so thankful for Lucy's team of doctors. They are working hard to keep her happy and comfortable. So many families here have traveled from far away to get care here, and we are lucky enough to have it in our backyard.
Thank you for checking in on Lu and keeping her in your thoughts and prayers!

The Big Day

The time has come. Lucy's surgery is tomorrow. Bright and early. She will walk in with one port in her stomach, and come out a week later with two.

We hope to gain better functioning of her g-port for draining and an easier time changing out buttons here at home. Its also possible we will be able to increase her feed rate once she heals.

This surgery is a big one. Its going to be hard on her little body. We worry about complications. Lucy is stronger than the last time she went into the OR, so we hope things will go as smoothly as planned. But with Lucy, you never know until you get her there.

I'm definitely worried. But if I had ever wondered if this surgery was necessary or not I got a pretty decent answer this week. We lost access to Lucy's g-port this week for a solid three days due to some sort of malfunction. Its only a few weeks old! She was so bloated and upset her throat and mouth were burning. She accidentally lost her stomach contents on the floor. To correct the problem it would mean heading into the hospital for sedation and re-placement, more exposure to radiation, and another day spent waiting around the hospital waiting room. After this surgery, I would only have to slide in a new button right here at home, in less than 5 minutes.

So, tomorrow we take the plunge and hope with all our hearts that this is the best possible option for Lu and that all of the best things come from it.

I will try to update as often as I can over the next few days!

Lucy's Recital

Lucy had her recital tonight! She did great! The video above is just rehearsal, cameras weren't allowed in the theater during the actual show. Lucy just loves dance. She hates to miss a single class and takes her performances very seriously.

I volunteered to be the class mom backstage again this year and I am pooped!

Running!

Things are getting quite busy around here.

Lucy's surgery is next week. We are expected to remain inpatient for about a week, so I need to tie up loose ends here at home- errands, bills, laundry, cleaning, cooking and freezing. We had a pre-op exam on Wednesday and I am trying to get Zachary wrapped up with school so he can take a break while Lu recovers. And did I mention Big Zach starts school next week too? Whew!

Lucy's dance recital is this weekend so we've had rehearsal, photos, and then some more rehearsal. I will be glad when its over! Lucy loves ballet though. She takes herself very seriously when it comes to dance. She never wants to miss a class and let down her teacher.

I have definitely been too wrapped up in all the things to do around here to really sit down and let it hit me that this time next week my brave girl will be back in a hospital bed. I don't doubt that it will hit me at some point in the next few days though!

As always, thank you so much for checking in!

Getaway

Yep. We went on vacation. The mother of all vacations. And we kept it a surprise for the kids. It was awesome!

We spent all of last week in Florida with Big Zach's family, touring Disney, Universal Studios, and Sea World. The kids had a LOT of new experiences that were just amazing- petting dolphins, riding rollercoasters, a plane ride, meeting their heroes, traveling so far from home. It was a trip they'll never forget.

We originally started planning this trip because it seemed like things had become stable enough that it was the optimal time. As it turned out it was the best time because life had taken a chaotic turn. It felt so good to escape life for a week- to just enjoy ourselves and forget about all the hardships going on at home, to forget the feelings of doubt, fear, shame, and anger.

The trip was exactly what we needed, when we needed it.

As you may have figured out, Lu's tube replacement went fine on the Friday before we left. We waited around all day and she slept while trying to remain patient. We finally got taken back and she was out before I blinked. We got her hooked up to her drainage bag and a pump full of pedialyte. Then we were on our way home shortly after dinnertime. After that, its all a blur of excitedly packing while the kids slept!

This week is just playing catchup after checking out last week. School, activities, therapy, preparing for surgery in just 2 weeks. Busy!!

Crazy Week

Today Lucy had her first appointment at the new children's hospital with her new psychologist.

The facility is great, much better than before. The waiting room was bright and clean. The room we had our appointment in was spacious, as compared to the closet she used to have her appointments in. Other than a parking snafu that forced us to walk a couple miles, I can't complain.

I think I like the new psychologist. She was enthusiastic and assertive. Which is a combination Lucy needs. She also seemed focused on helping Lucy gain independence emotionally.

Right now Lu struggles with grief over her situation on a daily basis. She can range from sadness to rage, and this goes on just about everyday. We do our best to validate her feelings and let her know she is being heard. But its difficult for her to identify her feelings and find better ways to express them at this age. The psychologist wants to spend some time working one on one with Lu to help her learn to identify her emotions and ways she can cope.

This Friday Lu has a tube replacement scheduled.

Her g-port has been giving us a hard time with draining, which is not helped by the fact Lucy has been stealing again. She got a hold of a chocolate cookie last week and it took over 24 hours to leave her stomach. So when the food is combined with a malfunctioning tube, Lu can't be vented and she ends up throwing up in her mouth and just overall feeling very uncomfortable and bloated. Her stomach has become so slow that draining as much as is possible is essential to keep her comfortable.

Friday will just be a simple replacement, which still involves sedation. We should be in and out within a few hours time...I hope! Once she has the Roux en Y procedure, we wont have to keep going through this replacement circus act. But for now, we will deal and just pray for a complication free replacement this one last time.

Changes

It has been a long long time, I know. Life has kept us busy.

We had high hopes that this year would be our best yet. Things were really coming together health wise for Lucy, financially for our family, and career wise for my husband. We kicked off the new year looking for a house, hoping to get closer to friends and family. We planned a big vacation with our family. We really thought things had stabilized in our lives and we were back on track.

But, God certainly had other plans in store for us.

Suddenly, after nearly 10 years at his company, my husband's job was in jeopardy due to company layoffs. Thankfully, he still had a job, but the position he held was eliminated. Things hung in the balance for a while, leaving us terrified, but once we knew his job was stable, we were able to accept the change. We were not happy about it, but when so many of his coworkers were laid off, we could only be grateful that he could still bring home a steady paycheck.

Just when we felt relief and began looking for a house once again, we got more dreadful news.

Suddenly, after over 2 years of formula coverage, our claim for Lucy's monthly shipment was denied. I won't lie, it was sheer panic on our part at that point. Lucy cannot survive without her formula, and the cost per month is at a catastrophic expense. We contacted everyone we could, did everything we could, argued every point that could be made. Lucy's GI even wrote a letter warning our insurance company that she would require hospitalization for TPN (nutrition through a central line, IV) or that even death would result.

We sought help from the state Attorney General's Office and through all of our arguing, debating, and compiling information, we discovered that we do not have coverage for formula in our policy at all. Our policy specifically excludes coverage unless its for a metabolic disease. It seems the only reason we received it earlier this year was due to a coding error.

At this point, we unfortunately are stuck with the monthly expense of Lucy's formula on our own. The cost is astronomical- I just charged a month's worth to our card yesterday and the total came to over 800$. Add in the copays, deductibles, and other out of pocket expenses for her doctor appointments, procedures, tests, and surgeries. The expense quickly can total near 1400$. Based on our medical deductions from last year, we can estimate that our out of pocket expenses for this year may total close to 19,000$.

This is crippling. We have no idea how we will make this work but we will have to. We will have to find a way. A door will open somewhere. God will provide for us somehow.

There are even more changes ahead for us this year.

Lucy is scheduled for a major surgery June 6th. She will have a Roux en Y procedure in order to make feeding through her small intestine easier on her. The procedure will basically construct an arm out of her intestine that comes up to the surface so that a J-button can be placed at the skin. At the end of the procedure she will have a separate G-tube for draining her stomach and a separate J-tube for feeding- sometimes referred to as "Tubies Squared".

This procedure will eliminate the need for Lucy to undergo sedation to have her GJ replaced every +/-3 months (this greatly reduces the risks associated with frequent sedation and regular exposure to radiation over her lifetime). It will also make it easier for us to continuously drain her stomach, which has been an issue with GJ tube. Her new tubes will be replaced by me at home, just like replacing an earring. It really makes tube feeding much easier on us in the long run.

This is a huge surgery though. Her internal anatomy is permanently altered. Doctors don't often recommend this procedure because its a difficult one, but both Lucy's surgeon and GI feel she is an excellent candidate. Typically, this surgery is only recommended when doctors are not expecting a patient to come off of tube feeds anytime in the foreseeable future. Overall, they believe its the best way to help Lucy remain stable, comfortable, and happy for the long haul.

So, it has so far been a stressful year that doesn't seem interested in letting up. Its been a lot to handle. We are uncertain what is up ahead, but we are trusting there is a plan in store for us. Lucy is growing and thriving. We still have a roof over our heads. We're still together and holding strong. There are things to be grateful for everyday, even if we have to squint a little bit some days to see them.

Thank you for staying with us this long! It was a lot to catch up on!

Erin

Monthly Update (sorry!)

Alright, alright. So here we are again, another huge lapse in updates. We've been busy though, and in a good way!

A couple weeks ago we took the kids to upstate New York to visit my sister. We had an amazing time! We saw the Falls, the zoo, botanical gardens, ate real buffalo wings, and got in some great quality time with one of our kids' favorite aunts!

The vacation was truly a blessing. Before the GJ tube Lucy could have never in a million years made that trip. She was too wiped out, dehydrated, exhausted, and unhappy to enjoy a trip like this. But instead, she ran and ran, we didn't use the once previously dependent-on stroller to navigate any of the attractions and Lucy was just as happy as could be the entire time. This is a tremendous turn around for our little girl, just tremendous. We are living again!

Yesterday morning we had our regular appointment with our GI, Dr. G. We had lots to discuss since we haven't been in since the GJ placement.

Lucy weighed in at 30.5 lbs! That's a 2lb gain roughly and put Lu into the 42nd percentile. This no longer puts Lu as Failure to Thrive!! Her height remains bad and sometime next year we will need to see endocrinology to assess whether or not its a growth issue or just genetics. I am thinking its genetics, but because the lack of vertical growth is a change from her history, Dr. G feels the opposite. We will see.

We also discussed Lucy's totally absent stomach emptying. We've usually been stuck constantly draining her stomach to keep her from throwing up or dealing with reflux and bloating. We also have to flush her stomach frequently to thin out the mucous in her stomach so that the g- port to her stomach doesn't become clogged. The whole process can take up most of our day but its the only way to keep her severe reflux under control and to keep her tube from becoming clogged. Dr. G felt that a good option for Lucy would be to keep her on a farrell bag all day long. This is basically a bag hooked up to her stomach all day that she will drain into. It means having her lug around yet another bag, but the trade off is the freedom of not having to worry about excessive bloating, painful reflux, or time consuming flushing and draining at all hours of the day. Hopefully this works for her.

Dr. G was thrilled with Lucy's progress physically and emotionally since getting the GJ tube. Even he could see on his own how much more energy she has and how much happier she is since the placement. He wants to make the j-feedings a more permanent situation. A GJ tube really isn't meant for long term use. It can be long term, however the button has to be replaced every 4-6 months (and that's if its problem free, if not, then even more) and replacing it means sedation and a minor procedure several times a year. When a child is expected to stay on J-feedings pretty long term, its a safer, easier, and less costly idea to surgically place a tube into the small intestine.

The procedure he wants to do is called a Roux-en-Y and it basically will permanently alter the anatomy of her intestines. The procedure will create an arm on her intestine and pull it up to the surface so that a new button can be placed at the skin for direct access to the small intestine. She'd have two separate tubes on her abdomen- one for venting and draining the stomach, and one for feeding into the small intestine. Tube changes would still need to occur but they could be done at home by me in 5 minutes. This basically just makes life easier on Lucy in the long run, however, its a major surgery with some significant hospital time. The idea of this surgery has been on my mind since we left Dr. G's office. Its a huge huge decision, and not one without risk.

In the meantime, Lu is going to be scheduled for her first tube change in December. The button is set to fail anytime from December to February and since we've reached our out of pocket max for the year with our insurance, we won't have to pay for this change. What a relief! It will run us something like 1200$ out of pocket every time she needs a new tube and its nice to know we will be set for the first few months of the new year.

I think that about covers it all. I'm still wrapping my head around it all myself. So many major decisions to make in the year ahead, so many developments in the year behind us. This roller coaster has been insane! I am so thankful for the good changes, and am already so deeply worried about the future in front of us. I hope I can make the right choices and keep my baby girl happy and healthy.

Thank you for checking in on Lu!

Updates, Updates.

Sorry, I know I haven't been updating the blog. I hate leaving people to hang when they care, but sometimes I just can't get myself in the mood to even talk about the issues once the kids have gone to bed. Its been way too long since my last update though.

Things here are....alright I guess. I get a bit frustrated with our situation at times. People often ask if Lucy is "better" now, if shes "improving". I have to pause and decide whether I want to give the long answer to those questions or the short one.

She's well, gained a couple pounds, seems to be digesting her formula a bit better than before, and has a lot more energy than before the GJ tube. But because the GJ tube is not a cure, and is merely a different way of supporting her GI system so that she can live, her problems are all still very much still there.

Her stomach still sucks. At this point nothing moves at all, and I am stuck draining her stomach around 4 times a day or else she can throw up. Even at a rate of 60cc's an hour into the small intestine, her gut can swell up like a 6 month pregnant lady. While her energy levels have improved, she sometimes comes home and crashes from a playground session or ballet, needing extra sleep, extra fluids, and time to bounce back.

Yesterday we ran a couple errands and met up with a homeschool group for a playground day, so we were away from the house out and about for hours. Lucy played and had a great time, but by the time we left for home she was totally worn out and ended up hurling in the car on the way home because I hadn't been home to drain her stomach. In hindsight, I should have just stopped off at my nearby inlaws to properly drain her before venturing home, but it just really stinks that we've been reduced to that.

We started seeing a psychologist a few months ago, and Lucy's assessment came back with flags for depression. Really?! How does a 4 year old end up in that kind of boat? She seems to be in a stage where she's really picked up on the fact shes different from everyone else and isn't happy about it. She keeps asking when she'll be able to eat, why it is shes not allowed to eat, why she has to have this or that done at the doctor's office. Its a hard time for her, she seems to have become so aware all at once.

But, it is what it is. We have the hand God gave us. We have many many gifts. We aren't in a hospital or unable to run and play. Lucy lives her life as it is. We have bad days, but we also have very good ones.

Good things have happened in the last few weeks too. There are things to be thankful for. Lucy is tolerating some types of gum, which makes her very happy. Like I said, her energy levels have really perked up since the GJ. She actually runs, plays, and seems interested in normal activities again. Her mood is greatly improved as well, so much so that her psychologist is giving us some time off to see how she does.

So, with all that being said, we are here, we are doing alright. I know this blog is supposed to be about updates on Lucy, but sometimes I don't know how to do that. I never know how much to reveal, how complicated to make these posts, or when to just point blank say "I wish things were different."

But, if you've been checking and regularly thinking about Lucy, and waiting for an update, I thank you. Thank you for keeping her in your thoughts and prayers.