Struggles of a Non-Diagnosis

For the first year, we had no idea why she was failure to thrive. She had a laryngeal cleft, but it didn’t explain the vomiting we were still experiencing with feeds. None of this was making any sense to us. We adjusted her formula from Pediasure to Kate Farms in March. In March, we also switched from an NG tube to a G tube. These tubes are imperative to her getting enough calories. She wasn’t eating enough by mouth. She also started speech for eating which was then halted due to her not tolerating food and she started coughing up a storm. Something about watching your child go through surgery and therapy very close to each other is crazy and sometimes scary. In March of this year, we were suspecting that Mackenzie had a stomach condition known as Gastroparesis which meant her stomach doesn’t empty like it Is supposed to. We trialed a medication that will help her and guess what it did. She stopped throwing up but that all changed in an instant. I think May 2022 is the scariest thing I have ever gone through with her. Mackenzie was very sick. She wasn’t tolerating feeds, so we opted to give her Pedialyte. Well, the Pedialyte caused her blood sugar to drop. The readings I was getting was in the 60s. They had us go to the hospital. When they checked her blood sugar it was 25. Low blood sugars are incredibly dangerous.

                  Once we got the blood sugar of 25, they immediately took us to a trauma room. Mackenzie was limp and it was difficult for them to get access. Ultimately, they had to place 2 IVs, an IO line which is a line that goes directly into the bone. I was having to give a lot of information to everyone. Trying to make sure she is okay. Keeping her dad and everyone up to date on what was going on. They finally got her stable, but it took a while. She was admitted into the IICU to monitor her blood sugar hourly to ensure her blood sugar raised. The scariest part of all this is not knowing what caused her hypoglycemia since she was getting Pedialyte. Her ketones were through the roof, so they knew it was ketotic hypoglycemia. So now, we had to carry emergency medicine. In the time, this has occurred 4 times and I have had to give rescue meds each time. It is scary when things like this happen, and I can’t fix her. She didn’t stop the vomiting episodes, so we decided in August of 2022 to switch her tube from a G tube to a GJ tube with feeds going through the J part of the tube. The J stands for Jejunum which means it is in her small intestine. This tube worked well. She was gaining weight appropriately. However, in September we had another issue with her blood sugar where I had to call 911. We got sent to one hospital which then transferred us to the children’s hospital. At the children’s hospital, we did critical lab testing. This testing saw that her cortisol levels were acting strange, her growth hormone was low, her ketones were high which determined she has ketotic hypoglycemia, which is common in young kids, but they should grow out of it. We didn’t do much regarding her growth hormone until she about to be 4.

                  We didn’t know what caused it, so they asked for a second opinion at CHOP. The appointment at CHOP wasn’t until January 2023 and I didn’t think they would really listen to me. Turns out I was correct. It came time for that appointment. He came in and got a brief medical history and asked what testing had been completed and what her feeding regimen was. He told us that if we increased the rate of her feed from 43 to 45. Her body didn’t handle the increase, so we shut it down. 2023 became more eventful because Mackenzie got sick three times within 2 months.

The first time she had the stomach bug which ultimately turned into horrible diarrhea. She went into the hospital due to severe dehydration and illness. She was discharged and the next day we had to attend a funeral for Lawrence’s mommom. That was rough, I was grieving her death on top of grieving I was dealing with a child that wanted to poop 15 times in 6 hours. Ultimately, we ended up back in the hospital, we did a formula switch, and she started to heal.

She ended up getting sick again with a cold. However, that cold was rhinovirus, enterovirus and adenovirus. She was diagnosed on a Monday and ended up in the hospital on a Thursday. She had all three viruses, an ear infection, and a brewing UTI. During that 25-day hospital stay, we learned that she also had a small bowel small bowel intussusception. It took three ultrasounds to find the intussusception. This hospital stay was not only on me but also the older kids. They really missed their mom during this time and anytime that we are in the hospital for an extended time. While she was in for that hospital stay, it was the beginning of a long road with her GJ tube. Trying to figure out why her body is doing what is doing is so complicated!