Made of Gray

Raising the Rare Child

The Great Escape - Discharge Day

Raising the Rare ChildHolly D. Gray3 Comments

Two days shy of one month, Caleigh was discharged from the hospital. Late yesterday, Friday, we packed up and headed out the door around 5:30pm. 

Over the past week, Caleigh's feeds were able to be advanced to 44ml at a continuous rate. She had Pedialyte at 20ml on Monday, July 4th. On Tuesday, late afternoon, they decided to start full strength feeds at the 20ml an hour that she was already at. Early the next morning Caleigh had half a dozen stools and one after another before 10am. By the time the team made rounds, Eric and I had decided that we should move slower. The team agreed. 

The Great Escape via

The day that she started feeds it was decided to do it without her normal pectin added in. We add pectin to Caleigh's Elecare JR formula to slow it down in her tract and to keep the symptoms of Dumping Syndrome at bay. They wanted to see how she would do without it. 

So when she started stooling a lot everyone decided we would add back in the pectin at 3%. Her regular amount is 3.5% which we'll move up to eventually while outpatient if she seems to need it. If her stooling gets better we will start to back off of the pectin hoping that the dumping syndrome resolved due to the surgery. 

A few hours later we started the pectin and the stooling slowed down. Two thoughts here. One is that after you haven't been fed in so long, your intestines seem to overreact producing more stool in the beginning. The other thought is that she needs the pectin and that her dumping syndrome hasn't resolved. Either way it slowed down. 

We went up by 5ml every 12 hours after that day. On Thursday night Caleigh was 14ml away from goal. We asked to go up by 7ml that night and 7ml on Friday morning. She made it.

This entire week they were weaning her off of IV nutrition. She was off of it for 4 hours the first day, 8 hours the second day and on Thursday night she was hooked up for 12 hours. She came off of it completely on Friday morning. Caleigh was tolerating everything. 

Normally they like to keep patients at least 24 hours after going off of TPN. Our planned discharge was Saturday morning, but we pushed to leave late Friday. Everyone in surgery agreed. The PICC line was pulled, we packed our stuff and walked out the door. 

Caleigh slept beautifully last night. We all did. We all woke up together in the same apartment. We're cuddled up on the couch, sipping tea and coffee and watching the Tour de France. It's gently raining outside and it's not supposed to get above 66 degrees today. My gratitude, happiness and love is overflowing. We made it through. 

Over the next two weeks we will be enjoying the area, taking day trips and making our way to clinic appointments here and there. My updates will be fewer here, but I'll continue to check in. Let Caleigh's summer begin! 

Thank you again to everyone that provided prayers, thoughts and support during the past month and throughout her life. We appreciate it so very very much. 

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Happy July 4th & Three Weeks Post-op

Raising the Rare ChildHolly D. Gray1 Comment

Today marks three weeks since Caleigh's surgery. We're still steadily hanging out at Boston Children's Hospital. 

Since the fistula ruptured last weekend, Caleigh has increasingly felt better. Her seven day round of Vancomycin and Meropenem were finished on Friday. Luckily, Caleigh's fever hasn't returned meaning the infection is gone. 

Happy July 4th & Three Weeks Post-op via

Caleigh did develop blisters along her incision. The consensus is that her body is rejecting the dissolvable sutures inside. She still has these blisters, but they look less angry and tight as of today. All of the steri-strips have been removed incase she was reacting to the adhesive on those as well. 

The hospital stepped in and ordered Caleigh's own diapers since she is allergic to the brand they carry here. The day she got out of ICU they tracked them down, ordered them and they arrived the next day. This place is truly amazing.  

Each day it seems that we are getting rid of more and more in terms of support. With less scheduled, we can leave the room more often. Earlier this week we requested no nighttime vitals, repositioning, diaper changes, etc. AKA... don't mess with her. Caleigh is sleeping better as a result. 

The fistula finally looked as if it was closed or almost closed up on Thursday. The drainage was minimal and only when she was standing, dancing or exerting her strength in some way. On Friday, they decided to start clamping her g-button for two hours at a time. On Saturday, they closed it for four hours, then eight hours. On Sunday, Caleigh's button was closed the entire twenty four hours. She tolerated every last bit of it. 

Happy July 4th & Three Weeks Post-op via

Today... Monday, we started a Pedialyte drip. First 10ml an hour and now she's up to 20ml an hour. Every four hours they will go up another 10ml until morning rounds where there will be talk of starting feeds or not. This will be slow. Better slow and safe than having a setback at this point. 

Caleigh is ecstatic. We go over each day's plan and the next steps and she smiles and grins. She said it felt good to have pedialyte in her tummy which is a good sign. She also continues to stool regularly. 

We're all getting a little grouchy and anxious of hospital life at this point. The noise is really getting to all of us. The Grays are one tiny family of introverts and this amazing place for children is not conducive to that trait. Alarms, nurses in and out, vitals, rounds and our dear sweet, screaming at the top of their lungs, neighbors (two to be exact) are wearing us down. We basically have a lack of energy to do much more than art projects, listen to music, get dressed up pretty, go for many walks and watch TV. Put that on repeat and you'd be ready to run for the hills too. 

Today we got dressed in our Fourth of July outfits and walked around the almost empty hospital and Caleigh worked on a watercolor flag this morning. We had planned on staking our claim to a great Boston Pops spot and watching the fireworks while we were in town. I had bought Caleigh her patriotic dress before we left home knowing that was the plan. It was a bit of a let down if I'm being honest.

I have to say that we're grateful though. Through all of this Caleigh's team has been cautious and daring. The nurses are so caring and sweet. They are amazed at her recovery. This was a huge and very long surgery. No one expected her to be doing as well as she is. She's bouncing back like nothing has happened. I know for a fact that I wouldn't be as brave and strong as she has been though this. Seriously, she's is my hero.

Tomorrow the hospital will be in a flurry again. There will be people in and out all day. Starting feeds is still up in the air. Caleigh's team and her progress will guide the way.

For now... we stay. 

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Two Weeks Post-op & a Fistula

Raising the Rare ChildHolly D. GrayComment

Gastrointestinal fun fact:

Enterocutaneous Fistulas are abnormal connections that create leaks or openings through the skin. 

Guess who has one?

Today marks two weeks since Caleigh's 10th intestinal surgery. It's been a long two weeks that have flown by, if that even makes sense. I was snuggling Caleigh yesterday, breathing in the sweet smell of her neck, and thanking God that we made it through those hard two weeks together as a family. I'm putting that behind us and looking forward to the next adventure. 

Around 4am on Sunday morning, Caleigh's incision opened up slightly and infected pus and fluid started to ooze continuously from the area. She actually woke up in a puddle. We started jokingly calling her oozy susie throughout the day as her tummy got flatter and her condition improved. She really started feeling better by just getting the fluid out. 

This morning when we spoke to the surgeons they let us know that this is now considered a fistula. A bad intestinal connection had been in their minds, but now that the drainage has started they are fairly sure this is what Caleigh has. The fevers are trending down with no spikes or need for Tylenol since 1am Sunday. The new antibiotic and/or fluid drainage is getting to the abscessed infection and taking care of it so far.

A fistula makes perfect sense. Caleigh doesn't have muscle in the front area of her abdomen. They've been moved and rearranged over her many surgeries. The amount of scar tissue that was adhered to her abdominal skin was extensive. When this was cut away the intestines didn't have a source of blood supply that it normally would from the muscle while healing. The area has been slightly oozing and causing the redness and swelling since the beginning. It finally made its way up and out at the surface. It's a very strange turn of events, but one of the small possibilities with intestinal surgery. Caleigh's surgeon said that she is definitely one of a kind and with the complicated and long surgery that she had he is quite happy with how she is doing now. 

Yesterday, Caleigh tolerated four hours at a time with having her g-button clamped. Since the discovery we've opened her g-button to gravity again. They don't want any pressure on the area from the inside while the fistula is healing. Caleigh will continue to receive IV nutrition through the PICC line while we wait.

I'm told that it could take a couple of weeks to months to heal. This is a small fistula so it would obviously heal sooner than a larger opening. This will extend our stay and change feeding plans quite a bit. We have our apartment through hospitality homes until July 19th. Caleigh will remain inpatient in the hospital until the fistula is gone. This should heal on its own without surgery, but time will tell. 

Caleigh's lungs are great. The team is still hesitant to drop chest PT and nebs, but they are lowering the frequency each day. 

Caleigh was able to leave her room today for the first time since surgery. We went down to the bunny garden and felt the cool wind on our faces. Caleigh chased bunnies and smiled so much. We made our way up to Seacrest studios which is right up Caleigh's alley. She made music requests, danced, smiled, chose the purple room lighting and voted on the best Pixar movie. This is somewhere we will visit again soon, if not tomorrow. 

Caleigh is feeling much better and for that we are very grateful. We'll see what path this new plot twist takes in the coming weeks. Please pray for and keep Caleigh's safety in your thoughts as she, hopefully, heals quickly from this. 

Details for mailing a letter, card or package to Caleigh. You can read more about sending mail to a patient on Boston Children's website.

BOSTON, MA 02115

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Post-op Day Eleven & Twelve

Raising the Rare ChildHolly D. Gray1 Comment

Post-op Day Eleven

We spent Friday resting and hanging out in our room. Caleigh was still breathing fast, but the fevers had broke as soon as the fluid was drained from her abdomen. She was getting round the clock Tylenol and Toradol. She stopped needing the Valium for pain. Her respiratory rate was still considered fast, but it was slowly getting better in the 50s & 60s. 

They added in nebulizer treatments and an additional neb steroid as well as chest PT every two hours. Her lungs sound fine and everyone says so, but they won't let go of the orders yet. 

Caleigh slept well through the night even though they woke her often. She was able to fall back asleep quickly. 

Post-op Day Eleven & Twelve via

Post-op Day Twelve

The preliminary cultures on the drained fluid is still negative. The fluid could be clear based on the antibiotic coverage. Meaning it could have still been infected fluid, but the antibiotics were taking care of it anyway. Whatever it was, Caleigh's demeanor and condition has improved quite a bit since removing it.

Caleigh continues to stool and the gastric contents that are draining to gravity are clearing up and becoming less. Today we started closing her g-button for two hours on and two hours off. If she tolerates this then feeds could be in the future. 

Post-op Day Eleven & Twelve via

Her Tylenol is PRN and the Toradol was removed as of this morning. The Toradol is out of the picture now because it can cause intestinal bleeding if used too long. By noon, her fever returned. They drew more labs and cultures and gave her a dose of Tylenol. Her body is still fighting the mystery infection. This afternoon they switched up her antibiotic coverage and added in another fluid bolus after lab results came. We're hoping this new antibiotic does the trick. 

The red area on her abdomen continues to get smaller, but not go away completely. They believe she may have two separate things going on. One being cellulitis, a bacterial skin infection, and the other being the infected abdominal fluid. 

Caleigh's lungs are doing great. They moved chest PT to every four hours and the PT that did it this morning said she doesn't need it. It was left on the orders for good measure I guess. Maybe it'll be able to fall off by Monday. 

Today, Caleigh was able to get in her wheelchair for the first time since surgery. She lasted over an hour and then spiked that fever at noon. She was able to wear her AFOs for that small time too. She's tired and weak, but in good spirits with the right entertainment. Her sweet voice is still hoarse from the breathing tube, but it's there and getting stronger. The PICC line makes getting dressed with sleeves impossible and the pajamas in these photos were dirty within 6 hours of putting it on. Back to hospital gowns we go. Caleigh and I both got a good two hour nap this afternoon. It was lovely and much needed. 

The plan is to now wait. Wait and see if the new antibiotic kicks the infection to the curb. 

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