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!!!