Stand with Mackenzie Through Her Journey To Healing And Hope

Hi. My name is Samantha Mattson and we are raising money to help our daughter Mackenzie as the next few months we will be having a lot of appointments to figure out what is causing her motility issues with her stomach and parts of her small intestine.

Mackenzie was born at 33 weeks and 3 days. She spent some time in the NICU, but overall she did okay. She really struggled to gain weight, and for the first 6-7 months of her life, I kept fighting for a GI referral. We finally received one, and we suspected that her issues were related to her lungs. So, we saw a pulmonologist, and he ordered a bunch of tests, one of which was a swallow study. That swallow study changed everything. We learned that she was aspirating on her bottles, and if she lost weight by her GI appointment, she’d be admitted to get an NG tube. Well, we got to GI, and she had lost weight and was directly admitted into the children’s hospital. During that hospital stay, we learned she had a type 1 (later we learned it was actually type 2) laryngeal cleft, which is a groove in the larynx that doesn’t block the trachea fully when swallowing. She would need it surgically repaired eventually, but she needed to grow. She did well, but we had to get a G-tube because it was going to be a while before the repair, so we met with her Pediatric Surgeon who went through everything, and we did the G-tube in March. Right after that stay, she started profusely vomiting and not tolerating feeds, so back to the hospital where we suspected, given her symptoms, that her stomach wasn’t emptying appropriately. We trialed a medication called erythromycin, and things were okay. Then a few months later, she was still throwing up, but it was impacting her weight, so we met with surgery again and got the GJ tube. A GJ tube allows for you to be fed in the small intestine instead of the stomach. She did great with it until February 2023 and March 2023, where she was hospitalized twice with illness that caused her motility issues to get even worse. She was going under anesthesia monthly for a new tube due to balloon popping or one time I accidentally pulled it out. We were meeting with CHOP Motility, who was honestly not helpful, so we talked to our team about other options because feeds were still an issue. We discussed with surgery about separating her G and J tube, so in October of 2023, we proceeded with the surgery, which ultimately failed. She was in more pain and having more issues. The J-tube pouch that was created healed partially twisted and had adhesions attached. At the beginning of the year, we talked to our GI team about seeing one of the top motility centers in the US, which was Nationwide Children’s Hospital in Ohio. That was going well until March when everything got put on hold.

In March, Mackenzie had a bezoar-induced bowel obstruction, PICA, and iron deficiency anemia. She was airlifted to the children’s hospital in Hershey, where her team is located, and they operated for 5 hours. She was so nutritionally deficient that she needed a Broviac central line placed to receive Total Parenteral Nutrition, which means she gets everything she needs right into her vein. We started to slowly get her back on tube feeds, and then in May, she started throwing up again. Something was wrong, but we didn’t know what it was. I got a call that the doctors at Nationwide wanted to see her, so we made the trek out to Columbus, where we learned that he suspects that after the bowel obstruction, a section of her intestine is not moving appropriately and wants to do pressure testing to see how it squeezes. However, at that moment, he felt she wasn’t strong enough to do it because her labs were a mess, and we had a big problem. We got home, I discussed plans with her team, and then the end of June happened, and she was throwing up multiple times in the hour. She was directly admitted with sepsis of her Broviac line. During this admission, we learned that she can’t tolerate more than 6 mLs of tube feeds.

Her story is long, but she is brave and strong. She’s a warrior and keeps fighting! All the money raised will go to helping us pay to get to her Nationwide appointments, any bills that may arise while we are there, and to pay for medications since her insurance for medications cannot be used. My husband, Lawrence, takes off so he can be there with us and only has so many vacation days he can use, and my income isn’t enough to sustain us. Every little bit helps.

Thank you for taking the time to read this. We appreciate everyone who is willing to help us through this crazy time!

Samantha