June 14, 2020
“You, who have shown me great and severe troubles, shall revive me again, and bring me up again from the depths of the earth. You shall increase my greatness, and comfort me on every side.” Psalms 71:20-21
When Sophia gained 3 pounds after the G-tube surgery, we were very excited and felt that we can breathe a little bit now. Unfortunately, this didn’t last very long. One week after the visit with her GI doctor where we received the good news about her weight gain, Sophia started to wake up in the middle of the night and was throwing up. In the beginning, we thought maybe she was sick. But she didn’t throw up when she ate regular food, even when she was sick. Sophia was getting scared of the feeding tube to the extent that she started begging me not to give her the formula through the G-tube at night. I started skipping a few nights to give her a break but she kept on throwing up, 2 times out of 3. I called her doctor and he suggested to reduce the amount I am giving her from 60 ml to 50 ml per hour. This helped initially, but that didn’t last more than 1 week.
It was so frustrating! After all that we went through and when we finally thought we will have a solution to Sophia’s lack of nutrition, this happened. However, Sophia’s attitude was amazing us day by day. She would have a very rough night but then she wakes up in the morning, it was as if nothing happened. She would wake up in a very good mood, happy and enjoying her day. A little child who was living with a positive attitude. There was nothing that could get her down, she had a positive outlook on life and NEVER complained. We all were getting closer to God day after day, and I had to remember the closer you get to God the more trials you will go through. That’s when we realized it’s ok to go through what we have to go through as long as God is by our side. Through Sophia’s attitude, we were reminded of God’s mercy and that He was in fact by our side.
After the surgery, we took a month break from physical therapy during Sophia’s recovery time. As soon as she went back to physical therapy, we noticed a big improvement and that was because of her good nutrition. She was gaining a lot of strength in her muscles and it was noticeable. Around July 2017 we had to change her G-tube for the first time. This involved sucking out the fluids from the “balloon” inside her stomach that was holding the feeding tube in, then pulling out the feeding tube and then re-inserting the new feeding tube and finally filling the “balloon” with fluid using a syringe. They expected us to do this at home on our own, but we had no idea what to expect, so we asked if we can do the first feeding tube change at the doctor’s office so that he can walk us through it. While the doctor started changing it, she cried and screamed a little bit. When we asked her, she said it didn’t hurt but there was some pressure. I thanked God that she didn’t experience any pain, because we have to go through this every 3 months. We explained to the doctor that she is not tolerating the formula from the G-tube and he suggested that we change the formula to something easier to digest. That gave me hope. This formula may have been the problem causing her to throw up.
We switched to the new formula and for the next 2 weeks, it was great – no throwing up. Yet again, we were back to the same problem – Sophia was throwing up in the middle of the night while she was receiving the formula through the feeding tube. At this point, I started to modify the feeding based on what worked best for Sophia. I started to experiment with the amount of formula to figure out how much she could tolerate without throwing up. It was successful! She was not throwing up, but she was not gaining a lot of weight. I tried as much as I can to give her regular food during the day so that I can decrease the amount of formula at night.
Of course, her GI doctor didn’t like what I was doing because she is not gaining the amount of weight that he wanted her to gain between visits. There was always a frustrating discussion between him and me. I told him, “since we don’t know the reason why she is not tolerating food, we will not be able to find a solution.” His answer was the same as always, “we can’t find the problem because her condition is not allowing us to do more testing.”
That’s when I decided to reach out to my friend, her genetic doctor. I explained to her my point of view and concerns and I also asked her if she can transfer me to another GI doctor. At this point, I didn’t want to deal with Sophia’s current GI doctor at all. She was so kind and offered to refer me to another GI doctor, but also offered to have a chat with Sophia’s current GI doctor on my behalf. I agreed to her suggestion and she spoke to the GI doctor and explained the disease from her point of view. She dealt with numerous children who had muscular dystrophy and noticed a lot of children don’t gain that much of weight even on a G-tube. She said it might be the disease that is causing all of this. At this point he needs to back up and take it easy on us.
It felt great to have someone who understood my frustration from a medical prospective. Someone who reassured me that I am not a bad mom and I am trying the best I can to help my daughter. Her genetic doctor also advised me that it’s time to refer her to a pulmonologist, so we can check her lungs. We were due for Sophia’s yearly echocardiogram, so we also scheduled an appointment with her pulmonologist around the same time.
Lessons Learned:
- No matter how bad things seem to be, you can choose to be positive through God’s grace
PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.
