We’ve been really busy doing everything and nothing at all. The kids (knock on wood) have stayed out of the hospital since our last post. Jackson, unfortunately, has been having a few extra seizures and we are working with his neurologist to get those under control. He’s also been a little congested the past few weeks and we’ve been getting a lot of use out of the suction machine, as well as the pulse ox and the oxygen machine.
Adventures with the Van
Jackson and I recently had an “adventure” when the ramp literally came out of van after we arrived at one of his appointments.
I thought I had everything under control until the door wouldn’t shut and rain clouds rolled in!
I called MC Mobility, the company from which we purchased the van, and it immediately sent a tech to us, who got the door to shut and helped me lift Jackson into the van. After we dropped off the van to get fixed the repairman called with an update and said, “Ma’am, I noticed that you’ve had your van for over a year and haven’t brought it in to be serviced.” I thought he was talking about an oil change until he told me that the handicap ramp needs to be serviced twice a year. Doing so will prevent “emergency situations” from arising. Lesson learned.
I 💙 my Vitamix
Jackson is solely g tube fed now through a puréed-by-gtube diet. We purchased this AMAZING Vitamix blender and I make his food every other day. The Childrens Hospital Feeding Team gave us a recipe, which consists of lots of fruits and veggies, protein, olive oil, yogurt, pediasure, baby cereal and vitamins. I put everything in the Vitamix and it purées the food smooth enough to fit through the g tube.
When I say my Vitamix is amazing I mean that it literally blends raw carrots. This diet is great because Jackson is able to get real food into his stomach and he’s not just eating formula.
More G Tube “Adventures”
At our post-op g tube appointment, the surgeon told us the g tube site was healing nicely and gave us minimal instructions on how to put the g tube back in should it fall out (The instructions were so basic that I searched You Tube for a video on how to replace a g tube at home). Everyone in our immediate family prayed the g tube would not fall out while they were watching Jackson.
Well, the g tube fell out while I was at work one day. I raced home at 90 MPH because I had to put in a new g tube before the hole in Jackson’s stomach closed. These g tube holes are similar to new earring holes only they close up MUCH quicker.
It took me about 20 minutes to get home and that was almost too long. I immediately got out the new g tube, put vasoline around the part that gets inserted into the stomach and pushed it through the g tube hole. I had to push three times to get that little sucker in because the hole had closed slightly and the new g tube did not want to go in. Talk about stress!
After the new g tube was correctly inserted (TMI: you can tell it’s in the right place if gastric juices come out), I had to go back to work. However, I was so proud of myself for accomplishing this great medical feat that I felt like going to the hospital to scrub in for surgery.
Practice Makes Perfect
Jackson will be performing in a music recital at the Cincinnati Association for the Blind and Visually Impaired tomorrow morning. He will be playing the chimes to the song Lava You. We’ve been practicing a lot at home over the past few weeks, as well as during his music therapy sessions, to get ready. I hang the chimes over his hand using a universal mount which attaches to the wheelchair. It’s taken a lot of practice to get the positioning correct so that Jackson has the best ability to play them. Some days Jackson plays the chimes very well and other days he’s not really interested. Fingers crossed that he performs well during his song. I will try to put the video on here after the recital.