Failure to thrive
Maddison’s feeding continued to deteriorate after her spica cast came off. I had tried everything I could to help her, but Maddison continued to spit up anywhere from 75-100 times per day. I kept hoping things would start to improve, but they weren’t. She was starving, and we were beginning to get desperate! Read the Spica Story Part 1 and Spica Story Part 2.
I knew she would end up in hospital
We had a scheduled appointment with her development and feeding team at Sunny Hill Health Centre, but as I should have only been packing for a day trip, I packed an overnight bag as well. I had a feeling in my gut she wouldn’t be coming back home that night, and I wanted to be prepared.
During our appointment Alastair and I emphasized how bad Maddison’s feeding had become. We also mentioned how it seemed that her body tone had changed. She clearly wasn’t tense anymore. Now she was lethargic and limp. It was a full swing from hypertonic to hypotonic. But was it from malnourishment, or something else?
As we were undressing her for the physical part of her examination, everyone in the room was blown away at how skinny Maddison was. It was clear Maddison needed to be hospitalized to find a better method to nourish her body. Our doctor instantly got on the phone and called the paediatrician on shift in the ward at BC Children’s Hospital.
“I can see every rib in her body sticking out”
Within one hour we were admitted to the hospital. It was a feeling of total relief. I knew Maddison would get the help she so desperately needed.
But answers would not come quickly, or easily
Maddison’s swing of tone, and how much she had deteriorated was a huge concern for the doctors. The first couple of days were a blur as almost every one of her doctors wanted to see for themselves Maddison’s condition. She had so many blood tests done, and all the tests were coming back close to normal. They called for an urgent Whole Exome Sequencing to be done. There really wasn’t anywhere else for them to look to find what was causing Maddison these symptoms.
But she was still so frail
What I knew was I wasn’t going to wait any longer for a j-tube, and I advocated and pushed for it. The procedure was very quick and preformed in Interventional Radiology. Maddison didn’t even need to go under anesthetic. They were able to put the new gastro-jejunal (GJ) Mic-key through her existing stoma, and feed the tubing into her intestine.
Within a day her reflux almost disappeared
Maddison transitioned well to receiving her nutrition into her small intestine. But her body doesn’t seem to be able to handle anything in her stomach, and she would spit up her stomach bile. Once we started to drain her bile her spitting up almost disappeared entirely. Now we would have to wait to see her gain some weight. Read our post on transitioning to j-tube feeding here.
In the meantime we met with a GI
The gastroenterologist doctor made some adjustments to Maddison’s care by jacking up her calorie intake. I was very hesitant to do this and I felt at the time she was getting enough calories and needed a different kind of formula instead. But, I put my trust in this new doctor, and slowly she did start to gain weight.
This is what she needed
As a parent, we can know what is best for our children, and sometimes we don’t. As Maddison’s mother, I was a very active part in making all the decisions for her care. I did my research, and was an active participant in bedside rounds. I ask questions and advocate what was best for her, even if it means inconvenience and more work for me. As a parent, I love my children with every ounce of my being, and want them to live long lives.
They say the days are long, but the years are short, and it is so true.
We are thankful that Maddison did in fact start to gain good weight after transitioning to feeding through the j-tube with extremely concentrated formula. After 15 days Maddison was finally stable enough to come home.
We don’t have answers to Maddison’s condition, or what caused her decline in feeding. But we do have a way to feed her now so that she can be nourished and grow. We will continue to wait for the testing results.