It's Not That Scary...Really

There should probably be about three pages of updates here in order to encompass all that's gone on in the last 3 months, but its pretty much the same thing over and over again regarding Lu- infection, antibiotics, tests, lousy motility, poor nutrition, flailing and failing. You could also throw in there some of the usual stresses like work, money, my own health, and the holidays to add to the little crisis fiesta going on around here.

And all of it leads us to where we are now, most importantly- home and doing well.

Small, abbreviated background: Lucy continued with that on and off again infected mass near her j-tube. Each time her intestines would practically halt and we'd be stuck watering down her formula and running feeds for a measly 10 hours a day. It was taking its toll on her emotionally and mentally. Her body was starving, and therefore her brain too. It was making us all exhausted and miserable right along with her.

Finally, after the third or fourth round with this mass, and after Lucy's GI system appeared to have slowed to a permanent crawl, our GI and surgeon decided that she must have a leak somewhere in the new intestine that was constructed back in June.

Exploratory surgery was set up the day after her birthday and just a week before Christmas. We didn't even care about the timing, doing something to fix this was all we wanted. The plan was to find the leak and either repair it or redo the surgery entirely. The doctor would drain the mass of infection on her abdomen. It was also decided that they would place a PICC line (a central catheter in the arm that goes to the heart for intravenous feedings) and come home from the procedure on TPN.

Resorting to TPN is a long standing fear of mine. It sort of signifies the end of the road. Once you are on TPN its critically important you get off of it. Its a daily risk of infection, with the potential to lead to sepsis and death. And if that isn't terrifying enough, theres the fact that TPN is super hard on the liver long term which makes it an unfavorable long term solution for nutrition.

I had nightmares leading up to Lucy's surgery day. I envisioned the absolute worst case scenario, and fretted as though this all meant certain death. I grieved on the inside while feverishly trying to prepare for life after her surgery.

As it turned out, once our surgeon got in there, he couldn't find a darn thing wrong with her new intestine. He tried like heck to find a leak, but to no avail. So he closed her back up, drained the mass, and a PICC line was inserted so we could come home in time for the holiday.

And if that wasn't a gift enough, TPN turned out to be more of a godsend than we could have imagined. Lucy is so bright and full of energy. I see her cheeks plumping up and her mood improving. She's happy. She's just a 6 year old girl right now. Its amazing.

Don't get me wrong. TPN is a HUGE responsibility. It took 3 days just to learn how to take care of Lucy's line. We are clean, clean, clean. It takes a good 30 minutes to prep her bag and "make" TPN each day. She runs on a pump with a huge bag for 16 hours a day. We have a home nurse come in each week to change her dressing and draw labs to make sure her nutrient levels are "just so".

But, when she's not on that pump 8 hours out of the day, you completely forget there is anything not normal about this child. We all so desperately needed this break from cramming calories into an intestine that just won't work. Its like a vacation.

The plan is not for us to remain on TPN long term. Dr. G intends for her to use it very temporarily in the hopes that the total gut shutdown was due to the infection on her abdomen. He hopes that, after she heals and catches back up on nutrients, she'll be ready to just get back onto her j-tube feeds and see some of the benefits her surgery was supposed to have given her from the beginning.

We go back to see Dr. G on the the 8th, which will likely be when we discuss a formal schedule to get off TPN and back onto formula. I dread going back to multiplying hours by ounces by calories each day and striving to cram more and more in to reach some distant goal that seems completely unattainable. But for now, we are just going to completely enjoy our time right now- focusing on the healthy changes we see in our girl.

Infection Update

Lucy's infection seems to be clearing up well with the 2nd round of antibiotics! Most of the redness is now gone. 

She is still dealing with diarrhea, stomach pain, bloating, and reflux. She also continues to show signs that formula and meds are migrating upwards, into her stomach sometimes. We will give full strength formula another attempt once her course of antibiotics is finished.

Its great that the infection is clearing, and we are hoping it doesn't return when she stops antibiotics like the last time. Still crossing our fingers!

Narrow Escape

Lu had her appointment with Dr. G yesterday. There wasn't a whole lot to be excited about, other than that her weight has remained steady. She hasn't lost a pound despite being on a fraction of her feedings for a while now.

We narrowly escaped another admission. Lu's tube site still has a a mass just above it and redness streaking off of it. Its hard to be sure what is going on, but the history of cellulitus and the risk of infection were enough that our surgeon and Dr. G had to decide whether or not to admit us. They let us slide with some antibiotics to take home and a list of reasons we are to report to the ER if there is a change.

The site looked pretty angry by bedtime tonight, but it may have been her abdomen bloating as usual that caused it to seem larger. I am waiting to see what is looks like by the morning.

Other than that we are holding steady while she finishes yet another course of antibiotics.

Her tube site continues to leak badly during feedings, she is regularly complaining of stomach pain, then theres the bloating, headaches, diarrhea, and crankiness. Dr. G reassured us we need to give her more time to bounce back and not convince ourselves her surgery was a mistake. He anticipated a complicated recovery. He still feels confident that in 6 months we will be back in a happy place. In the meantime, it feels like ugliness all around.

 A positive sign is that through most of this Lucy has remained functional. She still plays and runs around. She is sometimes too sick to do more than lay around, but other times she behaves perfectly normal despite everything. Thats certainly something to be thankful for! Kids seem to adapt to just about anything and Lu hasn't been the exception.

Crossing our fingers we can stay home this week!

Waiting Cautiously

Lu is hanging in there. Not too much different to update on:

I stopped the new medication. It didn't seem to do anything (we were told most see results in 24 hours, but it would take Lu up to 48). About the only thing we saw were some episodes of explosive..well, you know.

I started her on full strength formula today, just to see where we were at. She ended up with a case of bad bad watery..well, you know....and her bottom was so sore tonight she could hardly get to sleep. Her j-tube sight also started leaking badly, soaking through her shirt multiple times, and she started complaining her belly was hurting again. Not to mention, she was cranky cranky cranky most of the day until I took her off the pump (then shes all sunshine and roses).

So it's back to half strength formula we go.

Shes set up for an appointment on Tuesday with her GI, who has been out of town since this whole pseudo obstructive episode began. Hopefully he's going to have some advice or direction in which to go.

Thank you so much for checking in on Lu and keeping her in your thoughts!!

Long Long Long Day

We just returned from a LONG day at the hospital.

Lu struggled all weekend with pain, which continued into Monday. Her GI is out of town so I couldn't get ahold of him. I took her to our wonderful pediatrician who felt she needed to be seen in the ER this morning to get immediate attention. She had too much distention, too much pain and tenderness in the abdomen, too much nausea, and too much pain with feedings to wait until our GI came back into town.

We initially went to our therapy appointment this morning with the intention of going down to the ER afterwards if the pain was still an issue. But Lu got about 20 minutes into her session and began crying her belly hurt so much. Off to the ER we went.

After the x-ray everyone was pretty confused. The films showed that she had severely dilated bowels and huge pockets of air. All of this indicates an obstruction, yet they couldn't find one on any of the films. So, round and round they went, passing around the x-ray until it made its way to the attending GI who determined Lu is having a pseudo obstructive episode. Basically her intestines act like there is a blockage when there really isn't one. Its painful and complicated.

The best thing for us to do is to dilute down her feeds to 1/4 strength with pedialyte and begin using a medicine that will hopefully help her motility to wake up again. Other than that, we wait it out, trying to keep her hydrated and comfortable while it passes.

Hopefully she can tolerate these meds and her body will start cooperating again quickly!!

Slow

Things here haven't been that great for Lu.

Yesterday she started experiencing pain on the spot her cellulitus was located at again. Her belly is really distended and sensitive to touch. And today she had a screaming headache with eye pain all day long. Shes tolerating her feeds pretty poorly too.

Most of the last two days have been spent on the couch or in bed. She is very clearly not feeling well. Something isn't right. I have no idea what is going on. She was doing so well the first few days we were home so I am a bit puzzled. We are trying to wait things out here at home until Monday when we can reach out to her doctors. It would be great to avoid going back inpatient again.

Crossing our fingers that Lucy can hold out until Monday...

Home!

We were discharged Tuesday afternoon! Sorry its taken so long to update. Since this was an unplanned stay I had so much housework to catch up on. The house was a mess and the laundry was piled up!

Monday night was long and obnoxious. Due to a resident's mistake we had to do a blood draw at 1 in the morning to get labs that weren't taken when they were done at 10:30am the previous day! And trust me, this was not the first mistake of our five day stay that resulted in chaos and confusion. New residents start in July if you didn't know, so August is not the best month to go inpatient with a medically complicated child!

But alls well that ends well and on Tuesday morning we got AMAZING news- our insurance is going to start covering Lucy's formula again at the original 90% they were before!!

After appealing and appealing, calling and calling, we used a health advocate to review our case and work with our employer and our insurance company. They were able to get them to adjust whatever the mistake was and correct the issue!

I came home and put in an order right away, but we have to wait for reauthorization, so we are still crossing our fingers it works.

Thank you all so much for the prayers and thoughts! We are so so so happy to be home.

Update 2

Today was fairly eventful. The upper GI was cancelled and bloodwork was ordered instead. Screaming ensued because this is a major phobia for Lu, and this pretty much set the tone for the day. Once Lu has had a needle stick she gets super anxious around every doctor or nurse that comes near, which makes for a trying day.

I tried to keep her occupied as much as possible- trips to our old floor, a visit to the gym, visiting the library, multiple trips to the playroom.

Feeds were started around 4 this afternoon finally. Its a slow process after being on gut rest, so we are only running at 15 cc's an hour of 1/2 strength formula. She will gradually work her way up to full strength and speed by tomorrow.

As long as things go well we should be discharged tomorrow sometime!

Update

Well, today did not go as planned.

Last night Lucy continued to vomit when her j-tube was accessed. This thoroughly stumped the weekend doctor who decided we would remain on gut rest until she could get ahold of our surgeon.

In the morning Lu will have an upper GI with small bowel follow through in order to get a better look at the stomach and small intestine.

Since its Monday her surgeon and her GI will be back in the building, and can hopefully weigh in on our progress (or lack thereof).

The nurses are pushing to have us switched from surgery's service to GI's service so that we can get the specialized care Lucy needs right now.

It was a pretty easy day since we didn't make any changes today. We just hung out, counting down the hours until Monday when things can hopefully progress.

An Unexpected Stay

Sooo, here we are, inpatient again already...

I noticed Lu having trouble with her feeds early on this week. She complained of pain when running on the pump and was looking more distended than usual, in a lumpy sort of way.

By Wednesday I noticed a small raised lump on her left aide, about an inch away from her new j-tube. She also had been hardly sleeping and was begging to stay off the pump more and more.

Thursday the lump was even bigger and began to turn red. Anytime she was on the pump she was hunched over in pain. After calling her surgeon's nurse, we were told to bring her into the ER.

It looks like she formed a blockage and on top of that she has cellulitus near her tube site.

Shes being treated with IV antibiotics, bowel rest, and a clean out. But, as always, Lu has proven to stump our doctors. At this point the cellulitus is improving and the blockage is cleared, yet she remains unable to use her j-tube.

They've x-rayed over and over looking for another blockage near the newly constructed portion of her small intestine but are unable to find anything.

The plan for tonight is to continue with bowel rest and SLOWLY start feeds in the morning. Then we will go from there!

This has definitely been rough on Lu. Shes been in a lot of pain at times, vomiting, and had a LOT of tests and treatments in only a few days. She is really holding up well though and was so happy she could have ice tonight since she is on a drainage bag!

As always, thank you for following our blog and keeping Lucy in your thoughts!!!

Another Year Older, A Decade Wiser

Today was my 30th birthday. Its weird. 30 is all grown up....old.

I took it easy today, and kept the day low key. I napped (which is why I'm now blogging at midnight) and then we went to dinner- a restaurant where there were TV's in the booths so the kids were happy, which meant Zach and I could gorge and relax.

When I think about being 30, I realize I missed my 20's. I got pregnant with Zachary just a few months after my 20th birthday and its been uphill since then. Big Zach and I felt terribly guilty about having an unplanned pregnancy when we were so young and so unprepared. We swore to work ourselves near death to make up for it. We swore we'd sacrifice every minute of fun to save, plan, work, and create a stable life for a our kid. Its been tight budgets, nights at home, long hours at work, and feeling like we were in our 40's since then.

Most days were the same- work, sleep, work, sleep. Our friends moved on with life, enjoying hobbies, traveling, partying.

Its been 10 years. Life doesn't seem much easier. There is always a crisis around the bend, or some sort of turmoil lurking somewhere to keep us from exhaling. I'm starting to wonder if it was worth it to quit living for today in exchange for the hope of a better tomorrow.

Our formula crisis erupted at about the moment Zach and I thought we had made it. We had saved money for a house, gotten our finances in order, Zach's career was on its way, and we felt ready to live the life we had worked for. It seemed we had reached the light at the end of the tunnel and we were nearly ready to breathe relief after all these years. We thought we had gone from being two young dumb kids that made a big mistake, to responsible adults that came out on the other side.

Our latest crisis has certainly thrown a nearly impossible wrench into our situation. However, its forced me to come to an incredibly huge realization.

I have to stop living for tomorrow.

Tomorrow won't be easier because I didn't spend 20$ on a properly sized pair of jeans for myself.

Tomorrow won't be easier because I didn't take my kids to the movies every once in a while.

Tomorrow won't be easier if we stay home today.

Tomorrow won't be easier if I hold my breath today.

Tomorrow won't be easier if we miss out on today.

Tomorrow won't be easier because we don't have fun today.

Living like that means that "tomorrow" never comes. The distant idea of a "tomorrow" that is without crisis or worry isn't real.

It is perfectly okay to live (a little) today. Somehow, this cripplingly bad news makes me feel free. I know, I know. That's insane. But its not. Whats that saying? Life is about learning to dance in the rain...or something like that?

Yeah, its like that. Just like that. Thank you for the wake up call, God. I'm not going to miss my 30's. I will enjoy my wonderful husband, my amazing children, our friends, our family, the little things and the big things everyday.

Follow Up

Lucy's follow up with her surgeon was this morning.

She seems to have healed well and isn't having any issues with the surgery itself. The doctor was pleased with how things looked and how the incisions have healed. Shes running around and is her usual self!

Lucy is still having quite a bit of bloat and is only at 50 cc's an hour (less than 2 ounces per hour), which is still nearly10 cc's less than the rate she should be at. I haven't weighed her again since I last saw she was down a pound because I figured its irrelevant at the moment considering I can't do much about it. We are going to see her GI in the beginning of August and will deal with our issues then.

At the end of August Lucy will return to the surgeon to have the J-Tube replaced with a Mic-key button like the one she has in her stomach. Its a simple procedure, no anesthesia needed, and only requires an x-ray to follow up on its placement. After that changes will be done by me at home from there on out!

Lucy is doing pretty well. Not a whole lot has changed in the last few days, other than the poop situation. Turns out about 14 days was exactly what she needed to fully wake up from that anesthesia. Now we have the opposite problem. Oh well. Its always something!

The glue from the laproscopic incision site on her belly button came off. Her belly button is totally distorted so I hope it returns to normal at some point!

She is still dealing with an awful lot of distention in her belly and she complains about her stomach hurting her a lot. Her GI tract is not working at the same speed it was before the surgery. Hopefully things will return to her "old normal" soon.

According to my scale, shes lost a pound so far. If you've been keeping up with Lucy for a while now, then you know how hard it was to get her to the weight shes as now, so losing a pound is a little nerve wracking for this momma.

Thanks for checking in on Lu! We are keeping things low key around here for now so pardon our blandness. I expected our summer to be quiet, with Zach in school and Lu healing up. We do still always appreciate the thoughts a prayers of our friends and family!

Getting that new normal

Things are going alright for Lu. She doesn't seem to have any surgically related pain right now. Her surgical sites are healing well. Shes been resting a bit more than she usually would, but I would expect that! Shes definitely bloating up a bit. She is still not having BM's. She had the small one in the hospital Friday and another tiny one this morning- and thats it in the last two weeks. Thats probably not a good thing. We are going to keep on keeping on and hope for more progress. She has a therapy appointment tomorrow, and if things haven't improved I will call her GI on Thursday for help. Healing is a slow process!

Home!

We are home!! It feels sooo good! I hadn't expected our stay to be THAT long. Although, I am happy our doctors were concerned about making sure Lucy was sent home in the best possible shape she could be. There certainly have been times in the past where physicians sent us away, knowing she would fail, but wanted to wash their hands of it and let someone else deal with her slow progress. We were reassured, time and again, this hospital stay that they weren't sending us home until she reached certain dietary qualifications- one way or another. Lucy tends to just need extra time. Things are slow to wake up and restart while trying to heal at the same time. Her GI knew that Lu would need most of the summer to get back to full rate and feel good. I am pleased so far with how fast she has bounced back. She struggled far more with her g-tube placement (a much easier surgery) than with this surgery. Lucy is running at 51 cc's an hour, which is about 7 or 8 cc's an hour shy of her goal rate. Shes been complaining of belly pain but there isn't any obvious distention in her abdomen, so we have to assume it more of an issue of the Visceral Hyperalgesia than anything else. We may have to revisit the idea of medicating it if we can't resolve it in a reasonable frame of time. Otherwise, Lucy is up and running, forgetting she had major surgery less than 2 weeks ago!

Update 8

Things are going great!

Lucy has been running on 3/4 strength feeds at her goal rate for most of the day. She came off the pain pump and fluids as well! And the most important step in the right direction? She pooped. After 10 days it finally happened. Which is a great sign things are waking up perfectly now.

I am going to discuss bustin' outta here with the surgical team in the morning. Hopefully home is on the horizon!

Lucy otherwise had a busy busy day. We had lunch with the Chick fil A cow, art therapy, play therapy, a visit with the clowns...who said the hospital is a boring place for rest?

Update 7

Lucy woke up this morning with a clear bag- no bile! Thats a great sign!

So far feeds are up to 40 ccs an hour of diluted formula. Her GI just called with a good plan for moving up the feeds and hopefully getting us out of here this millennium.

Today was pet therapy day so we got a visit from Matilda the dog. Lucy could hardly wait to see her!

Update 6

Last night was a bit rough. Lu started having really bad leg pain and ended up awake until 1:30 in the morning, moaning and crying. After some painkillers and heatpacks she finally passed out for the night.

Today we tried to get a better handle on a plan and ensure the surgery team was collaborating with our GI. After some phone calls and meetings everyone seemed committed to staying the course for as long as it takes.

So, for now we are still at half strength formula and slowly moving up feeds. Her x-rays came out clear, so things are just taking their sweet time. Dr. G doesn't even want to continue using stool softeners because she just doesn't need to go, nothing is there yet.

Tomorrow we have animal therapy so we get to meet Matilda the dalmatian! Lucy is soo excited!

Outside of that, we will continue to wait...

Update 5

<p>Where o where do I begin?</p>
<p>Lu's IV blew yesterday late afternoon. Disaster ensued. My baby is petrified of needles and is a hard stick to boot. A couple hours later and tries by three separate teams, my baby was a devastated sweaty mess. If this one goes before we can get her feed rate up she will need a PIC line because there isn't a salvageable vein on her.</p>
<p>This morning was more bile and still no stool. So, off to x-ray we wnt to look for a blockage. No idea what it showed since I haven't heard.</p>
<p>We upped her feed rate to 25 ccs an hour, but we are now diluting it down. Which means we aren't making much progress.</p>
<p>Lu was in good spirits today though. The clowns returned for a visit and she even giggled! We also got to take a special trip upstairs to the indoor gym where we played a 3 foot game of connect 4 and bowled.

Lucy's been pretty limited in energy today. She slept late, then laid around a bit. Its now after 5:30 and shes been sleeping since 2:30. I tried to wake her but she refused.

So we wait...

Update 4

We've hit a few bumps.

Lucy's belly started producing quite a bit of bile- somewhat of an indicator that she is not tolerating feeds. We are slowing down the progression of feed rate, at 15 ccs an hour. Her belly is telling us it needs more time.

Lu also has stopped passing gas and has yet to have a BM since Tuesday.

So, we will continue to wait.

Update #3

Things are going okay around here. We've hit some bumps but nothing that is decidedly awful.

We started pedialyte yesterday morning at 5 ccs an hour (an ounce is 30 ccs). Lucy had been in a great mood. Chatting with doctors and nurses, eagerly venturing out to the playroom to cook soup in the play kitchen. But as the day went on Lucy became more and more irritable and hit her magic morphine button every chance she got.

She was fairly distracted for a few hours when our tubey friends, M and R came to visit. They brought us a tubey buddy they made themselves, which is a stuffed animal with all the same tubes and buttons Lu has! She absolutely loves it!!! It was so great to have our friends here just to hang out and play. We are so glad they came.

Once our friends left it was clear Lu was spent. Shes the worst about expressing pain. Lucy knows full and well complaining gets you more tests, doctor visits, and medicines. She tends to hide her pain and act out emotionally.

So, by yesterday evening I had a fair idea something was going on when my feisty little girl became unbearably unhappy. We all tried asking, letting her know we wanted to help. She refused and told us that she wouldn't say because we would just tell the doctors on her. Smart kid.

She did finally come forward and let us know where and how she is hurting, however, its difficult to know for certain its the feeds that are bothering her.

Today we will trudge on. We will begin formula at some point today on the same rate. Its a wait and see approach from here. Slow and steady.

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