Little Ladybug Hugs

Things have been pretty quiet on this page for a few months. The biggest factor was I was in full blown planning and packing mode for our summer adventure to the western USA.

It was an incredible journey that landed us and our vintage 31 foot Airstream trailer Juniper, in truly magical places.

We saw Mt. Rushmore – which was incredible. We aimed to arrive right as the parking lot opened to beat the crowds. It was a great idea as the national monument really wasn’t that busy until we were ready to leave.

Then we headed through the north and south loops of Yellowstone National Park, The Grand Teton National Park, and Mormon Row before heading north west to Missoula Montana.

I have been physically planning this holiday for 3 years – we were meant to go last year but Ladybug and her tummy had other plans.  Missoula, Montana was a must see on this journey. Not just because of it’s boho vibe and beautiful views, but because of one very special family. Ladybug was the 1st girl in the world to be diagnosed with her CDG subtype along with 2 little boys. Missoula, MT is where the 2nd girl in the world to be diagnosed with the same CDG subtype lives. They are “subtype sisters”, and it was a no brainer when heading to the western USA that we spend a few days with them. It was amazing watching the girls together and seeing first hand their similarities and differences. Our boys also hit it off right from the get-go and had a blast.

We are now home from our incredible adventure, and I’m in the lengthy process of unpacking everything! Definitely not as fun as packing it – actually that wasn’t really fun either, so I’m on the hunt for new packing suggestions.  After the first laundry run the highly organized outfit compartments were turned into a dig through the drawer and find game. I’m thinking packing cubes?!?

The highlights of the journey are on our travel FB page. We had a great time and can’t wait for next years trip. It was narrowed down between Alaska and the Southern USA – the kids picked down south so they could visit their cousins and so Ladybug could have fun at Morgans Wonderland in San Antonio – both of which are in Texas. It’s a super awesome accessible theme park built with children who have special needs in mind. Plus, I’ve always wanted to go to Savannah, Georgia so I’m adding that into the mix. Shhhh…don’t tell Daddy-o. 😉

Hooray – it’s new ear tubes day!!!! Finally after far too long of a wait, Ladybug is getting new ear tubes put in as I write this. We’ve been incredibly fortunate to keep her healthy and germ free beforehand so we didn’t have to cancel the procedure. I was really worried especially given the new Pre-Op set up Hamilton Health Sciences has. I must admit I really don’t like it. You walk into a very large space, one side is an urgent care clinic that was filled with people coughing, sneezing, and a child threw up twice while we were waiting on our side. The two sides are split by little glass dividers. Every time someone on the other side sneezed or coughed I just envisioned all those germs floating over to our side of the waiting room. Whoever decided that it was a good idea to share a waiting area for people needing surgery (many of whom are medically fragile), with phlegmy, snot filled, puking people, needs to definitely reevaluate things. Don’t even get me started on the 3 1/2 hour wait to see a nurse and anesthesiologist. There has GOT to be an easier way for kiddos like Ladybug to go through pre-op. Lets just say a trip to Starbucks after was definitely needed by the time we got out of that place.

Well that’s my little rant for now. All things considered, we are incredibly fortunate to have such a great team though. On a super awesome bright note, our favourite Mac Kids PSW Liz stopped in to see us while we were waiting for Ladybug to go in. It was such a great little visit, and just in her magical Liz way, she immediately had Ladybugs attention just by the sound of her voice.

I’ll do a quick update on the Little Ladybug Hugs Facebook group once my little princess is out of recovery.

The picture is one I was able to capture of Ladybug relaxing and enjoying a snuggle with mommy. It didn’t last long as she was quite unhappy that she wasn’t getting water when she signed for it.

Picture Description:

Ladybug, a teeny tiny 8 year old girl is snuggling in her mommy’s arms. Mommy is wearing a beige cardigan and Ladybug has her hair braided and is wearing a white kids hospital gown with a green ribbon by the neckline and puppy dogs, bees, and butterflies on it. She has her eyes slightly open and her left hand partially open and resting on mommy’s chest.

This update is a little late but it has honestly been very hectic these past couple weeks.

Ladybug was discharged just before school started, although I kept her home for a week to get used to being out of a hospital setting. A couple days after she was discharged there was a critical family emergency and our 3 year old niece came to stay with us.   Within a day the teacher in me kicked in and all 4 kids were on a set routine and things ran like clockwork. Except for laundry and keeping things tidy. Truth be told there were days the place looked like we took all the books and toys and just threw them in the air and left them wherever they’d land. The organizational freak who had a perfect place for everything in our hospital room had to learn to let it go, and have tidy up parties at the end of the day or every other day.

The entire summer seems like a dream now. 2 months of absolutely no sleep, endless IV alarms, 07:00 doctor rounds – running off of that primal instinct to always be there to advocate for my daughter because if I don’t no one else will. Despite all of the not so wonderful things that happened, I’m focusing on all the good things. The good things certainly come out on top – I’ll write more and share some pictures of our summer soon.

I’m eternally grateful to our family and friends who stepped up to help us out with the boys, checked in via text or messenger to see how Ladybug and I were doing, dropped off snacks and uplifting books, or just popped by to give me a great big hug. It gets very isolating at times, so each and every one of these were greatly appreciated.

Ladybug had a follow up appointment with our fantastic surgeon yesterday and everything looks great. We have an unrelated test at Sick Kids Hospital in Toronto this Friday – Ladybug will have to be sedated but we should be able to go home that same day.

Here is a picture of her on her first day of school.

Things are slowly getting better here – Ladybug is healing nicely from her Surgery a week ago, the incisions look impeccable, and according to the last contrast study there are no more obstructions. She does have very slow moving intestines (little to no peristalsis), so the process of getting her back on feeds will be long. The goal before she can start Pedialyte through the g-tube is for Ladybug to tolerate having her tube clamped for 24hrs.  This tests whether everything is able to move through nicely or not. Each day we add another 2 hours to the time. Today we will try 12 hrs and I’m sure she will do great. Providing everything continues to go well, Ladybug should be back on formula and out of the hospital in a couple weeks. 

Slow and steady wins the race – if this is the case Ladybug is going to smash that racing record. 

This morning we ventured to the lounge for the Wordworking with Home Depot activity. We worked together and built a fire truck to give to the 2 little monkeys at home. 

Ladybug was brought in to the OR for her surgery at 08:45 this morning. By 10:45 I was hoping for someone to come get me – but no one did. 11:45 – still no word. Finally at 12:45 the surgeon came out and said that the surgery went well.  They had found a stricture which is essentially a narrowing of the intestines. Because of this narrowing it was nearly impossible for food to get through which caused the 2nd obstruction.

The stricture was resected, and the small bowel(intestine) was stitched back together. She is now rocking a pretty large scar across her tummy that is held together with a topical skin adhesive known as Dermabond. This was new to me as her two previous surgeries she had steri-strips. I guess it is used more often in the USA as opposed to Canada – as it is rather pricey. (Her Surgeon was trained here at McMaster and then went to work at St. Jude’s Children’s Hospital in Memphis TN. She is now, thankfully, back at Mac Kids).

Her hemoglobin levels were low before the surgery so Ladybug was given a blood transfusion to help get her back to her normal, she was also given an epidural for pain management. This will stay in for a few days.

Around next Thursday they will do another contrast test to make sure that the resection site has healed nicely and there is no leakage. If all looks good they will very slowly start her on a continuous feed of Pedialyte then move on from there.

She is now back in our room and resting nicely, hopefully I will be able to do the same tonight.

 

This morning, Ladybugs surgery team had a big meeting with all of the surgeons from the children’s hospital, and 2 from out of town. They went over her tummy x-rays, ultrasounds, and the CAT scan. They were all of the same opinion that there is another obstruction – this time it is further up in the bowel (Upper Left Quadrant).

She will be going in for another surgery tomorrow (Friday) sometime. It is pretty unheard of to have a second obstruction after just having one fixed so there will be a couple surgeons on call to give some fresh eyes if need be.

You would never know that she is unwell to look at her. In fact, she has become the biggest little diva I’ve ever seen. She could be fussy one minute, but as soon as a nurse or doctor walks in she turns on the charm and starts smiling, chatting, and staring up at them with those gorgeous big eyes. Ladybug has definitely won the hearts of everyone here.

I’m thinking I need to make a sign for her hospital crib in big sparkly letters saying – ‘Though she be but little, she is fierce!’. This little princess has been through and is still going through so much – but she is a fierce little diva and will get through this too.

I haven’t really had much of an update since we were re-admitted Tuesday until now. The consensus is that Ladybug has a partial blockage, higher up in her bowels.

Yesterday she went back to have another PICC line put in, as there was no where left to poke for blood or IV’s. There is still a lot of green bilious coming out of her tummy. G-tube was hooked up to a drainage bag for the past few days to empty it. They also started to clamp the tube for 4 hours then let it drain for 1. This is done to slowly wake up the bowel and see if Ladybug can tolerate having it clamped. She did great with this – only minimal reflux. Today they are going for the gusto and will be clamping for 8 hours and draining for 1. She also started on some “lets get moving” medicine Domperidone – it is used to help get her gastrointestinal tract moving again.

The hope of all teams looking after Ladybug is that the partial obstruction will correct itself with resting the bowel and time. Monday or Tuesday she will get some more contrast put through her g-tube and go for a CT scan to see if the contrast will move nicely through the bowel or if it stops like before.

I have been doing a lot of praying, envisioning any obstructions moving through with her body healing itself, and doing a little Reiki and TT. I welcome any prayers, good moving thoughts, or distance Reiki treatments for my little bugs tummy. Neither I n’or her team of doctors want to go in and do another surgery so close to the last, unless there is no other way. I am only thinking happy thoughts of her tummy healing and us going home in the next week.

On Thursday a music therapist stopped by our room and played the guitar and sang for Ladybug. For a little girl who has been through so much this past month – this was very welcomed. Her eyes lit up as soon as she started to hear the guitar, and her entire body relaxed. A little drum was placed next to Ladybugs hand and together her and the music therapist played and sang beautiful music.

Video description: Ladybug is laying in her hospital crib with a little rectangular drum by her left hand, the music therapist is standing next to her playing the guitar.