Special needs with gut dysmotility

Mic-key tube button.

I just came back from PMH hospital to pick up Mujhee's feeding supply. After I prayed my noon prayer, Zuhr, and had chicken sandwich for lunch, I decided to go so that I could be home before Mujhee's father had to leave for work and F, her sister, finishes her school in the afternoon. I left Mujhee at home with her father. Before I went, I reminded him to check on her while he was gardening because Mujhee has had bad refluxs since last night. Earlier this week I ordered her milk prescription from the Nutrition and Dietetic Department at PMH, and they have delivered to us, few days ago.

Mujhee is very challenging to care because she doesn't eat, sleep and grow like any other typical children. She has a gastrointestinal tract or gut dysmotility, meaning her gut does not work properly at moving its contents (food, fluid ect)  through her digestive system. Due to her neurology disorder cause by her brain injury, her intestinal muscles has lost the ability to coordinate muscular activities, meaning its paralyzed. She can't eat orally so she is fed through a tube button that was inserted through her stomach because she has dysphagia, a swallowing disorder. I remember how naive I was, hoping that she can get better and can eat orally. It was not until she was 4 that, we decided to get the feeding tube done. Before that she had a nasogastric tube that goes through her nose, throat, esophagus and all the way into her tummy.

This gut dysmotility also makes Mujhee have gastroesophageal reflux disease, A condition in which food and gastric acid frequently flow back out of the stomach into the esophagus and mouth. She can't keep her food in her stomach so she is suffering daily vomiting, constant and sudden crying and 'colic' pain. She has excessive drooling, tooth enamel erosion and  bad breath. She also has hoarse voice, sleep apnea, noisy and laboured breathing.

On top of that, she is suffering from constipation with hard stools that cause tearing and bleeding of the bottom, difficulty going to the toilet, a painful and swallow stomach. 

Cartons of Jevity Hi Cal.

50 mls syringe and tube extension.

Couple of weeks ago, I order her milk script. We order her script every three months through the Nutrition and Dietetic Department at PMH and they get delivered to our house. Each order we get supply for three months of twelve cartons of twenty four cans per each carton. WOW that is a lot of milk. So for three months she will take 288 cans of 250mls of Jevity Hi Cal. That's a lot, right? We feed Mujhee four times a day. She can't tell us whether she is hungry or full, so she is fed four hourly. So her feeding time looks like this 10 am, 2 pm, 6 pm and 10 pm. Here is the video of me feeding Mujhee, I made a while ago. She is so cute in the video.

Mujhee has poor weight gain and weight lose. Since October last year (2016) Mujhee is on Jevity Hi Cal. Previously she was on Pediasure. She has been on Padiasure since 2. Her dietitian changed it because she needed to put some more weight on her bottom because it was skinny. She got reoccurring bed sore on her tail bone and with more fat on the area it can prevent it. We also made few other adjustment on her wheelchair seat, we got her new reclining chair with memory foam and change her mattress into air mattress. She put some fat after Jevity but lose weight lately due to reflux.

Mic-key tube replacement set.

Every six months we need to change Mujhee's tube button or Mic-key gastrostomy feeding tube. I would order her feeding supply together with 50ml syringes and extension at PMH twice a year in February and August. Once we got the tube, Mujhee's dad will replace her old tube to the new one because he is more brave than me. Although I will do anything out of love for her, things like changing the dressing for her bed sores or replacing the tube feeding.

I am aware that Mujhee is very much challenging to care but she has her lovely family, her dad and me, her mum. Sometime we, as Mujhee family, are surprised by the hard works of caring someone with special needs and feel like we had enough and or feel like we can't do it anymore but we keep going on for her and will never giving up on her because at the end of the day we realized that the purpose of our creation is to be test, as to whom among us is the best in deeds. I ask Allah to keep our faith strong, ameen.

Need to go and check on Mujhee now if she is already fell asleep because I am sleepy.

Until next post, may God bless you.

Love,
Lightnur