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!