Flashback and Feeding Update

I have recently been reading through emails that have been sent to the RTS list serve. I couldn't help but to get a flashback to the day when Max was admitted with his first aspiration pneumonia. During that hospital stay, we found out that Max was aspirating on his feeds and his reflux. He was also diagnosed with Rubinstein -Taybi Syndrome. He was sent home with a NJ tube (a tube inserted through his nose that feed him to his intestines). Over the next couple weeks, we discussed with the GI Dr and Surgeon the options of a permanent feeding tube. We were given the options of a G-tube with a Nissan wrap or a GJ tube. Although Max was fed to his intestines, he developed another aspiration pneumonia from the stomach bile he was refluxing. During that admission, Max had surgery to place his G tube along with a Nissan wrap.

When the G-tube was placed, I wanted to know how long he would have it. Would it come out in 6 months? Would he still be fed by a tube when he was 25? Not knowing was so hard at the beginning. I had a hard time wrapping my head around the whole feeding tube. An hour and a half feeds seemed crazy to me. How could we fit a feeding tube in to our life. I have never even seen a child with a feeding tube outside the NICU!

But we went home and worked to find a schedule that worked for Max. As time went by, the number of times he was throwing up a day and the length of each tube feed decreased. The feeding tube became part of our life and we accepted it. We accepted the fact that we were not going to know when Max was going to come off the feeding tube, but we have a feeling he will someday.

At the beginning of June, we took him off his overnight drip and gave him the amount he was getting overnight in a sippy cup. We give him two ounces in his sippy cup six times a day. We are going to work to bump him up to 3 ounces in his sippy cup at a time and see how he does with that. He loves to drink! Got to love progress! Way to go Max!