Back in May Kiddo underwent additional testing for his food allergies and esophageal disorder (you can read about it here and here and here if you are new to my blog). As you may recall, Kiddo has Eosinophilic Esophagitis (for an explanation of it click here then click on "About EE"). Throughout the summer he was on a severely restricted diet and he had to drink 20 ounces of an amino acid-based protein shake every day. Two weeks ago he went in for another endoscopy to see if this treatment plan was working.
Unfortunately, it wasn't. In fact, Kiddo's EE is worse than ever.
We realize now that he simply can't eat any protein whatsoever. The next step is to put in a feeding tube so that he can get the nutrition he needs. He is scheduled for surgery on Tuesday, 9/29. It is a simple procedure but he'll be in the hospital overnight just to be on the safe side - and of course I'll be staying with him. At first he'll have a PEG tube and after three months they will remove that and put in a G tube (you can see examples of both tubes here). This is the point where I tell you how truly grateful I am that my husband was a paramedic for 10 years; he understands all this stuff and knows how to clean and care for Kiddo's tube once it is in. I, on the other hand, am completely clueless.
For the first 6 weeks Kiddo will not be allowed any food by mouth, but after that they will allow him to add about 5 foods per month back into his diet (provided that his esophagus heals the way they expect it to). No proteins though - not likely for a long time, if ever. He'll be able to add several fruits the first month, a group of veggies the next month, and so on. He's not happy about the no food thing, but considering that we thought it might be a permanent food ban, this really isn't that bad, and Kiddo realizes it. The doctors told him that he'd be allowed to add his favorite food back in after 6 weeks - Burger King french fries. He's practically giddy with relief over that.
You may wonder how we are all handling this news.
Kiddo is doing very well. He was scared about getting the test results because he thought he wouldn't be allowed to eat any more, ever. Now that he knows he will, he's surprisingly fine with all this. In fact, as we were leaving the hospital after getting the test results, he got in the car and started singing Bob Marley's, Three Little Birds: "Don't worry, about a t'ing, 'cause every little t'ing gonna be alright." Needless to say, that made us all smile.
Hubby is having a harder time. He likes to think he is in control of everything (ha!) and of course there is no controlling this. Plus with his medical background he is more aware of the potential risks and side effects of both the surgery and the tube. But he's adjusting and handling things better each day.
I'm doing pretty good with all this. I'm one of those people who don't worry about things in the future - I think about what is going on right now and figure out the best way to handle it. The feeding tube truly is the best thing for Kiddo right now and I'm ok with that. Kiddo is actually looking forward to it in a way because he hates drinking that protein shake and it will soon be pumped in through the tube. And when Kiddo is happy, Mamma's happy. On a more personal level, I completely trust that God has a plan for all this; I may not ever know what it is, but there IS a reason that we are in this situation.
Looking ahead, Halloween will be tough. I'm planning to ask the doctors if he can have at least a few pieces of candy that night. By Thanksgiving he should be allowed a few foods and I'm hoping to make him a nice (if limited) meal. Christmas will hopefully see even more foods, and his birthday in January should see more yet. I hope.
If you've stuck with this post until now, thank you for your concern. I'll definitely keep everyone posted via my blog, Facebook, and Twitter ('cause I finally gave in and joined - @Age30Books).
Kiddo wants to do vlog to tell you all about the latest developments and his evil plan to keep me up all night long at the hospital - hopefully we can do that tomorrow.
For those of you who are the praying kind, here's my list of requests if you wouldn't mind:
- safe surgery for Kiddo on o9/29/09
- easy adjustment for all of us, especially Kiddo
- a few pieces of candy allowed for Halloween
- continued healing once foods are added back in