Today's hospital appointment lasted us in total 5 hours in the morning! Phew!
Finally, we successfully met up with the surgical team. It was a usual follow-up but had been postponed since January due to various reasons. I was glad we made it today as I had been wanting to ask one question.
Change the size of his feeding button
His feeding tube set for his size of 12Fr 1.7cm had doubled in price. From RM650 to RM1200.🤢 Seriously, we really can't afford, therefore I had yet to buy the extra to keep at home (Usually we are advised to have an extra set in case any emergency happens, and we have one ready to replace the faulty one.) The bigger size at 14Fr 1.7cm is RM740 which is still manageable although generally, feeding tube set is expensive.
Our supplies encouraged us to ask for a change in size, meaning, Jansen also needed to go through some procedures to widen his stoma. Finally, I got to ask the doctor this question today. "Do you think it is possible for Jansen to change his feeding button's size?"
So yup, Jansen got the green light to have his feeding button changed size, meaning we got to buy the 14Fr 1.7cm size first and set an appointment for Jansen to go hospital, be sedated so that it can be pushed in easier while he is asleep. It can be tight for the first insertion due to his stoma hole at 12fr size, so some pressure is needed to push in the new button of 14Fr size. I am nervous already. The day has not come, and doctor said to wait till the current one becomes faulty.
Fluoroscopy
Another procedure needed to be done soon will be fluoroscopy, whereby he will be asked to drink something with contrast and then and xray image will be taken to see how the fluid flow into his intestines. This is to see whether is there any constriction at his bowel, since he had been having monthly painful complications. I was nervous again whenever there is any upcoming procedure being mentioned. This one is scheduled on May, and he needs to be admitted, which he does not like it. He actually had tears hearing us discussing about this. sayang
Possibility of another surgery in the near future?
Doctor discussed with me further that maybe it is time to have another intervention instead of seeing him monthly in pain, reduced food intake, causing him kept losing weight, hence his size is small. Key-hole surgery was mentioned to cut away any scar adhesions which maybe was the culprit which after the fluoroscopy in the month of May, they can find out more details. I can't type much on this now because it is just something for us to consider, the one with highest risk, because sometimes during the surgery, surgeon may accidentally hurt the intestines and causing some bleeding but doctor did say that of course surgeon always tries their best.
I was actually having all sorts of mixed feeling hearing all these and preparing myself ahead. However, I knew Jansen needed my calmness and stability, so I remained calm for him, with a lot of internal conversation with God. I will take it one day at a time, and won't think till the surgery first. Let's focus on changing the size of feeding tube first, and then the fluoroscopy in the month of May.
God, we need You.
After making appointment for the fluoroscopy at another building, so many walks today, I brought him to the hospital park to relax and chill abit. The slide was wet, so he couldn't play. Therefore, we had a short time walking leisurely at the park. It sort of helped him to not think too much on all the stuffs doctor mentioned earlier.
Jansen, you are our brave boy. You had braved through so many things in these past 8 years of life and even with monthly pain, you still enjoy life to the fullest. We couldn't be more proud of you. You can do it. We've got your back. God has got your back too!
For the best experience view this post on Liketu
He is such a brave boy. May the procedures go well. Prayers for your family 🙏
Thank you so much, @coloringiship.🙏👍
Mummy, you're very brave too! God's got your back too! I've got yours too! Big Olive Hugsssssss ❤️
Thank you, Josephine. ❤️
Welcome! You're amazing Jade. Love you! ❤️
Wow really sound quite overwhelming by just listening to it too. Surely you feel too much when u heard it ytd too. One day at a time and new grace comes everytime a new agenda comes. Bless u all to brave thru it with God's courage too. Hugs Jade ❤️
Thank you so much. Truly appreciate it. ❤️
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I pray God will grant you wisdom regarding what to do and when.