A note for my nurse

little boy with tracheobronchomalacia and his nurse

In honor of Nurses’ Week, we asked a few of our patients and their families to share what their favorite nurse means to them.

Jack — Leah Frain, FNP

“Leah is a kind and beautiful lady. She helps kids stop getting sick. I like giving her hugs. And kisses, too! My favorite memory of Leah is me telling her I love her because she helps me stop getting that cough I have and helps me get better. We do fun things every time we are together and they make me really happy when we do them.”

Jack Baker, age 3. Jack has tracheobronchomalacia and sees family nurse practitioner Leah Frain and the rest of the Esophageal and Airway Treatment Center team.

little girl misdiagnosed with hydrocephalus

Charlotte — Donna Morash, RN

“My husband, Keith, and I first met Donna Morash, RN, on December 2, 2015, during our scheduled appointments in the Advanced Fetal Care Center. We were extremely emotional, coming off what ended up being a wrong diagnosis that had our daughter having absolutely no quality of life and the two of us considering termination. Donna talked to us, calmed us and laughed with us, which got our mind off of things.  

Our first meeting after an in-depth ultrasound and fetal MRI was with Dr. Benjamin Warf, and we were accompanied by Donna, a social worker and a nurse-in-training. Dr. Warf delivered very encouraging news about our daughter’s prognosis, starting with the fact that she didn’t have congenital hydrocephalus, despite what we had been told by another top Boston hospital a week earlier. After the meeting ended, and Keith and I sat there in disbelief that things could have turned around for the better. Donna grounded us in reality. She was encouraging, but also realistic. We appreciated her take on everything so, so much: Things seemed better, but we needed another opinion to confirm. As it turned out, the next opinion matched and Donna rejoiced with us. And she continued to do so when we came back two weeks later and the news was that everything was stable, which was what we all wanted.

Two months later, in February, after another round of ultrasounds and MRIs, the scan revealed possible dysgenesis of the corpus callosum, which scared us. Donna talked to us, calmed us and, ultimately, was there for us. I had many conversations with Donna during this time, right up until my daughter was born on April 6, 2016. After Charlotte’s birth, whenever we had an appointment at Boston Children’s, we always made a point to go to the AFCC to visit. That place, and this nurse, Donna Morash, helped us immensely during a time that was incredibly uncertain, stressful and sad, and we will always be grateful for her. Thank you, Donna. And thank you to all the nurses who tirelessly care for their patients and their families.”

— Jennifer Bent, mother of Charlotte, age 3. Jen and her husband, Keith, were seen by Donna Morash and the other clinicians in the AFCC after seeking a second opinion.

little boy with midaortic syndrome wearing a baseball uniform

Quinn — Linda Pengeroth, RN 

“When my parents asked me what I was looking forward to most about my return trip to Boston, they thought my answer would be, ‘The Red Sox!’ or maybe, ‘Seacrest Studios!’ I do love both those things, but I was most excited to see my friend Linda.  

Linda is an even bigger Red Sox fan than me and she makes me laugh like crazy. I know she really cares about me. Last fall, I had a type of surgery called MAGIC and had to stay in Boston for almost a month. My parents say they like that Linda was very comforting to them and always kept them updated. But what I like best about her is that she asked me lots of questions about myself and never forgets anything. We had a bubblegum blowing contest (I won). And she even gave me my favorite souvenirs—a Red Sox t-shirt and a matching scally cap!   

Whenever I get a photo taken of something I’m proud of — like my Halloween costume or landing a snowboarding jump for the first time — I don’t just ask my parents to send it to my Grandma and Grandpa. I also make sure they send the photo to Linda, and my other friend Jonette. I want them to see how awesome I’m doing now.

My family just got back from my follow-up appointment. We got both good news and bad news. The good news was that the artery my doctors used for my bypass is almost twice as big as it used to be. That’s just what my doctors were hoping. The bad news is that they won’t need to see us again for at least a couple of years. My and parents and I don’t think we can wait that long without seeing Linda and Jonette. They are like my family now!”

Quinn Rice, age 9. Quinn sees the team in the Midaortic Syndrome and Renovascular Hypertension Center, including registered nurse Linda Pengeroth and program coordinator Jonette Jean-Louis.

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