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. 

Slowly But Surely

15 Jul

Things are moving along here at Mac Kids. Ladybug had her PICC line put in on Thursday afternoon, it was a huge relief and meant no more pokes for daily blood work and no new IV lines. It also couldn’t have come at a better time as 2 of the 3 IV lines were kaput as of that morning. 

This is Ladybug waiting quietly for her turn to get the PICC. Her eyes are as big as the penguins. 

This morning she started on 10mls per hour of Pedialyte – this is big news as it means we are almost in the home stretch. Next steps are to slowly increase the rate and then in a couple days (providing the pedialyte is tolerated) add her formula. Once this is tolerated at a normal rate, the Mic-Key button will be put back in and fingers crossed we will be good to go. This next process, providing all goes smoothly, will take around a week. 

Wait and See. 

12 Jul

Let’s just wait and see. A pretty common sentence around here these past few days. As frustrating as it can be, I’m trying to remain positive and remember all the gains she’s had thus far. 

Ladybug’s sodium and potassium levels have almost normalized, the incision sites on her tummy are all healing beautifully, and her pain is finally under control. 

Sunday, Daddy-o brought her little brothers for lunch and a fun visit. We had a great time outside on the beautiful playground, and my almost 3 year old sang to her to calm her down when we returned to the room. The team started her on TPN (IV nutrition) a couple days ago – the downfall is that TPN will typically burn through IV lines. She currently has 3 IV sites, 2 of which are at the end of their lifespan.  Because of this and the fact that blood work sites are slim pickings, she has been scheduled to have a PICC line put in sometime tomorrow. A PICC – peripherally inserted central catheter, is a long, thin tube (called a catheter) that goes into your body through a vein typically in your arms, legs, or neck. Ladybugs last one was in her leg. The end of this catheter goes into a large central vein that directly drains near your heart . She will be put under for this procedure. 

Her tummy was draining through a foley line into a bag, but this morning it was clamped with the hopes of getting things moving. It seems to be working, and so far touch wood, no vomiting. 

Now we just wait and see. 

Emergency Surgery 

7 Jul

Last night Ladybug was sent to the OR for emergency surgery to fix a bowel obstruction. 

Monday started like any other day. Ladybug woke up and was her typical happy, chatty self. By Monday evening it was like someone flicked a switch. She began vomiting and not keeping anything down. I thought it was odd that she has a tummy bug as she wasn’t really around anyone but us, and there were no previous symptoms – but still started her tummy bug protocol of continuous Pedialyte feeds at a very low rate and gravol. 

For some reason the gravol wasn’t helping so I tried a different means of giving it to her to make sure she didn’t throw it up. 

By Wednesday her spit up became non stop and was dark brown. That bright red flag appeared and I went into prepare for a long hospital stay mode. 

We arrived at the hospital during what I call the magical hours. The ER is usually pretty empty – this was entirely planned.  (Not my first rodeo) 

Rebuilding fluids were top priority then the focus was finding out why she was spitting up such yucky stuff, why no bm in the past few days and why low grade fever. 

X-rays and ultrasound showed distended bowels. (Air in the bowels) Which was most likely caused by a blockage. 


Ladybug went into surgery at 23:00 Thursday night and they finished 01:30 this morning. Her bowel got caught up and tangled in a band of scar tissue from her previous bowel resection in 2010. Thankfully the surgical team were able to fix and save her bowel and no resection was needed this time. There is a risk of this happening again, but at least I’ll know the warning signs right away. 

She is on oxygen and resting nicely. Her kidneys are not working very well though, so fluid will be increased to try and jump start them.

We will be here for a while, but that’s ok. Ladybug is a fighter and she will be better in no time. 

World CDG Day

16 May

Today, May 16th 2017, marks the 1st official World CDG Day.  Ladybug was diagnosed with Congenital Disorders of Glycosylation in October 2010. I remember every single detail of the moment the doctor told me. There wasn’t really much information out there when we received her diagnosis. I had come across a website before hand that had several pictures of other children who had CDG, and I found one little boy who resembled Ladybug down to the same pudgy little hands. Fast forward nearly 7 years and there are Facebook pages, charity organizations, and now an official World CDG Day. I can only imagine how far we will go in the next 7 years.

This is an incredibly important day for our CDG family. We need to build awareness in order to increase the interest of academia, and the development of research. There is currently no cure or treatment for CDG. We need to be able to inform more physicians and every other healthcare professional out there, knowledge is power. Most importantly building CDG awareness will empower families and patients alike.

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A couple of years ago the CDG family worked together to develop a logo that would represent all of us.

 

 

It was recently announced that to go along with our logo, the CDG awareness colour will be green.

So today Ladybug is wearing a green dress complete with green ribbons in her hair.

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