Updated: Aug 14, 2020
A day in the life ( morning) Remove his pillows, remove feeding tube. Time for stretches: arms, legs and fingers. Prep for diaper change: insert extra protective pad in diaper, put on gloves; changing a 20 yr old man is a little different than changing an infant. I need to remove his gtube button from his stomach for about 10 to 15 min; he has had alot of unexplained leakage, we think maybe his stoma ( hole in stomach) stretched out, so I'm slowly trying to shrink it, not easy because since stomach is a muscle, it could close all the way, which means going to hospital and having surgery once again. So I'm staying by his side, watching the hole. I will prep his 3 meds while we wait. He gets 3 meds in the morning, 6 at night. Two of his meds are pills, so need time to dissolve. My wrist can't take any more pill-crushing. I feel so thankful I can do all of this calmly, as my sweet husband prepares breakfast for the rest of the family. As a mother it is so easy to feel torn between caring for our son and caring for the girls. Many time the girls have had to sit and wait for me. I am confident this has built character in them, this thought helps me not faint in guilt and sadness. Next I prep his morning feed and feeding tubes. Also, he gets 30 min of Vest therapy twice a day, when healthy, more when sick. This vest goes around his chest, it inflates and shakes, loosening secretions from bronchioles and lungs that could potentially cause a pneumonia. We are blessed to have this machine. It has saved us from many hospitalizations. I am blessed because we do not have to deal with suctioning, or breathing machines; many of my son's peers do, I admire these mom's/caregivers. I don't know why I felt the need to share a small part of our routine. I was at a women's Bible study and shared that Sundays are tricky. I have to set apart the whole day to prep for our 5:30pm service. I basically have to plan and almost manipulate my son's digestive system to poop before we go to church. I don't do anything dangerous or out of the ordinary, but all feeds must be done a few hours before we leave to give him time to rest and digest. He is almost 21, a very big young man. There are no public or private spaces to change him anywhere we go, not even the medical facilities. All changing tables are for babies and toddlers. It would be quite uncomfortable for him and those around him if he poops and has to sit in it for 2 or more hours. Our routine is not fool proof but works about 70% of the time. This means, no other plans on Sunday; no mall, no restaurants, no company. We just need to get ready for church. Needless to say, the ladies were shocked at the amount of work it takes just to get this family to church; and may I add proudly, we are there on time, lol. Ok, back to work, thanks for reading. Have a wonderful day!