Joanna’s Journey
In the fall of 2016, we welcomed our sweet little girl, Joanna, into this world. Soon after she was born, we noticed Joanna was not gaining weight as fast as she should have been. From our research and experience, we were aware that the disease she had been diagnosed with, Mucolipidosis type II, keeps children from gaining weight, but we still had concerns.
Joanna continued to decrease in her feeding more than we thought was normal even with her disease. Although she had a heart ventricular septal defect (VSD) as well, we still felt that she was being extra fussy at night for the past two weeks. We began to worry and wonder if we should take her to Cincinnati Children’s Hospital as a precaution.
After hardly eating anything on Thursday, January 12th, my wife Polly text me at work and suggested that we take Joanna to the hospital. We arrived around 8:00 p.m., and Joanna was admitted around midnight. Friday morning, the hospital gave her a NG feeding tube, and began giving her 2 oz. of breast milk with formula fortified. The nurses suggested trying to feed her with the bottle first, then what she didn’t take with bottle, she would get through the feeding tube.
In addition, the staff began giving Joanna Lasix for any fluids in her lungs twice a day; this helps her heart not to have to work so hard to burn extra calories.
We noticed a big change in Joanna. When she had her stomach full, she was able to relax more and sleep so much better, so hopefully she will continue to gain more weight and eat better in the days to come.
The hospital also did another echo cardiogram and said there have been no changes since the echo that was done at birth, so now we are confused what is causing her to not eat. More tests are to be done in the next few days. Doctors are thinking there could be a possibility that the lack of appetite is a metabolic related issue, but we won’t know for sure until more tests are done.
Leave a personal message for Samuel and Polly Girod
scroll to the bottom of this page
Update for Saturday, January 14th:
Joanna was fussy from 11:00 a.m. – 3:00 p.m., when she finally settled down. Doctors are still trying to see if she will take most of her milk by bottle in 3 oz. increments at a time, but she never takes more than 1 oz. if that and then has to be fed the rest in her feeding tube. We are so thankful for the support group we have on Facebook with all of the other I-cell families. This group has helped tremendously, and we are able to make better decisions based on the experiences of all of the group members! We, as parents of Joanna, are willing to accept whatever it takes to make her life safe and to be the best of quality. If it wouldn’t be for God’s grace and love, I don’t know how we’d make it. We also appreciate the support of our I-cell and Christian families. I will update more once we find out more.
Saturday evening:
I (Samuel) came home and am going to spend the night with our three other children while Polly stays with Joanna at the hospital. Polly just text me and said Joanna’s oxygen level dropped, plus she vomited twice. They were able to extract all the mucus out of her nose, but it sounds like she’s coming down with a virus according to the nurse.
Update For Sunday, January 15th:
I took the three oldest children with me to Cincinnati Children’s Hospital this morning, and we stayed there until 7:30 this evening. Joanna had a very restless night last night, so Polly only got about an hour of sleep.
In better news, we talked to the Cardiologist, and he said her breathing is good, and as far as he knows, she can be released to go home; however, the whole team of other specialist had to be in agreement. This report came at noon when I got there. Soon after the Cardiologist left, Joanna vomited and wasn’t able to keep anything down, so we became confused.
We are hoping it’s not the virus causing everything, although it could be. The nurse said something to the Doctor, and they ordered a chest x-ray. The x-ray came back good, so we asked them to do a swallow study or to do a scope in the upper or lower GI. They are using a pump to feed her milk tonight with the thought that if she takes in her food slower, it may help it from coming up.
Update for Monday, January 16th:
I came back to the hospital this afternoon and met with the resident Doctor. We told him that we wanted a swallow study to be done on Joanna even though it was hard getting across to him exactly what we wanted. Finally, the doctor understood, gave in, and scheduled one for first thing in the morning.
We were pretty adamant with the resident doctor tonight even when he kept saying that he’s confident that Joann’s issue is not aspiration or whatever concern we had. During the entire conversation, it seemed like it didn’t matter what we said; he kept saying, “in other words, it’s not an emergency,” which just irritated me so much more. Basically, he kept declining our wishes, so finally, I started to demand that we would like a swallow study tonight and asked that he pull whatever chain it takes to make it happen. The doctor replied that he didn’t think they could do a test tonight, so I told him that I wanted to talk to the administrator. He agreed, but the attending doctor came and was more considerate, so plans came in motion to do a swallow study tomorrow. I said there is no more reason to talk about it, but that I would like the doctor to do whatever he had to in order to schedule it. I hope I got a little bit further with this doctor since he seemed more reasonable and understanding, but in my heart, I do not feel completely satisfied.
Currently, they are not feeding her with the bottle tonight but will only be feeding through the NG tube until the study is done in the morning.
Note to the reader:
We would like to encourage you to leave a message for parents, Samuel and Polly below. When you do, it will notify them and be an encouragement to them. God bless you!