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Finding Our Groove

19 Sep

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.

Slow and Steady

17 Aug

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. 

A Very Long 4 Hours

5 Aug

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.

 

Though She Be But Little, She Is Fierce!

3 Aug

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.

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Wait A Little Bit Then Wait Some More

29 Jul

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.

 

Back for a Tune-up

26 Jul

Yesterday my lil Ladybug started to vomit a lovely shade of green, a call to the surgeon brought us back to the children’s hospital last night. Combine the fact that the ER was empty and the surgery team was waiting for us, we had an X-ray done and a room in 2 hrs – a new record for us. It also helped that she recreated the Linda Blair puke fest scene in the ER, narrowly missing me. 

The hope is that it is just an ileus, meaning her gastrointestinal tract still hasn’t kicked in after surgery 3 weeks ago.  Today she will go for a contrast test (injecting contrast into g tube then take several images to see if it’s moving or there is indeed another bowel obstruction), and another  X-ray to see if the air in the tummy has moved since her last X-ray at 01:00 this morning. 

I’m hopeful she just needs some extra time to get things moving and we’ll be home within the week. 

There’s No Place Like Home

20 Jul

Within a matter of seconds my beautiful little Ladybug knew she was back home, and is finally able to have a comfy nap.