After some previous posts about Jack’s aversion to eating and swallowing, I am proud to say that Jack is enjoying some Gerber cheese puffs again. He is also ‘washing’ them down with a couple trickles of vanilla formula. I think liquids will be a longer struggle than solids, but I am glad to see that we are going in the right direction again.
It seems like this last lapse from our eating progress was due to a little acid reflux caused by his tube feeding schedule. Once we lowered the dose and extended the time of the bolus, he stopped vomiting and went back to happy Jack. That’s my favorite Jack.
Well, most of you may not know, but Jack had an appointment at the GI clinic today. This is a regular visit so there is no need for alarm. He started attending this regular clinic because of the perforated bowel, ileostomy and lasix. But today we received a couple pieces of good news so I had to share.
1. Jack’s height and weight are now both at the 50%tile for his age. He had been lagging behind at about 13-26%tile and we were holding pretty steady. Since the ileostomy takedown, Jack has been steadily gaining weight.
2. Since Jack has been off the lasix since his cardiac cath, he no longer needs the sodium chloride to balance his electrolytes. Since lasix is a medication that draws fluid off of organs and tissues and out of the body, it draws sodium, chloride and potassium with it. One way to balance this is to supplement with sodium chloride. (If you want the cellular explanation to this, I can help you out off-line. It’s not this blog-worthy conversation). This leaves only two medications left on Jack’s list. Since he came home in March with 11 medications, Matt and I are overjoyed.
3. With no surgical sites, body modifications or medications that GI is monitoring, we are no longer required to visit the GI clinic! This is one less doctors’ visit and therefore more time that we get to spend with each other (and work) outside of the hospital. Though Cincinnati Children’s is a great hospital with tons of wonderful people, I am happy to spend a little less time there.
And though I have shared some really great news with you, no post is ever complete without a photo. Here is Jack wishing mea Happy Birthday. He (my mom) decorated with house and yard with balloons and banners. Thanks Jack (Mom)!