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Tuesday, September 22, 2009

Kiddo's Health Update - Big Changes

We interrupt this blog to bring you Kiddo news ... and I apologize in advance for the rambly-ness of it, but I can't seem to think straight at the moment.

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

33 comments:

Nymeth said...

Heather, he's such a brave kid. And you're such brave parents. Good luck with everything. I'll be sending you good thoughts.

Jen - Devourer of Books said...

Oh my gosh, I'm glad (an amazed) that you're all doing as well as you are. You're in my thoughts and prayers.

StephanieD said...

You all are certainly in my prayers. What a brave boy!

bermudaonion said...

I agree with Nymeth - Kiddo is an amazingly brave kid. I can't imagine going without food and having a good attitude about it. You'll be in my thoughts and prayers.

longbrakeliving said...

Oh no! Soo sorry to hear about Kiddo! I'll definitely be praying for a safe procedure and quick healing for him, and peace of mind for you and your Hubby.

Alyce said...

I'm sorry to hear that the test results weren't exactly what you hoped for! I hope that everything goes smoothly from here on out.

softdrink said...

Wow, that's quite a kid you've got! Bummer about the food ban, but good for him for being so positive. I'm looking forward to his vlog!

Dawn @ sheIsTooFondOfBooks said...

You'll have to play some Bob Marley in the background of that vlog - it can be your rallying cheer in the next few months.

Seriously, Heather - you, your husband and Kiddo are amazingly strong, and are each handling this news in the best way for each of you.

Thanks for keeping us updated; best to all of you over the next months.

Heather J. said...

Hi all - thanks for all the encouragement and prayers, both are very appreciated. :)

Photogrl said...

I will continue to pray for kiddo, you, and hubby.

You are all so strong.

((HUGS))

Ti said...

Oh Heather, I'm so sorry this hear this. On the one hand, it is scary to think about the surgery but on the other hand, it will be wonderful to not have worry about his growth. He will for sure get the nutrients he needs now.

Everything will be fine. You will all be in my thoughts.

Amy said...

Heather, I am actually crying reading your post, even though you already told me. What got to me was Kiddo singing Bob Marley. What a BEAUTIFUL heart he has.

We're praying for you and your family. Let me know if you need anything.

Violet said...

He is such a brave and sweet kid. I am not the praying kind but I'll pray for him and you both Heather.

Infant Bibliophile said...

I've just recently discovered your blog (through BBAW or someone from BBAW; I've lost track). Had no idea of the issues your son faces. What a brave boy, and mom and dad! Our son is allergic to wheat, eggs, nuts, milk, and sesame, and I see now that he is fortunate to be able to eat what he can. I hope all of your listed items come true.

Bibliolatrist said...

You and your family are in my thoughts...poor kiddo! Hopefully everything goes smoothly for him!

Meghan said...

I'm not the praying kind but I will certainly be thinking about you, your husband, and especially Kiddo over the months ahead. His bravery and optimism are amazing, what a wonderful boy you have.

Dreamybee said...

Wow. That's a lot to think about. I'm glad to hear that everyone seems to be handling this news well. Hearing about the BK fries helped things along tremendously, I'm sure! ;) That's awesome that Kiddo wants to do a vlog to talk about what's going on-can't wait to see it! Are you going to be allowed to film it, or is his evil plan a big secret?

Plays with Needles said...

You really are going through a lot but what a GREAT attitude both you and kiddo have! It makes sense that the tube will help his esophagus heal. Your prayer list is my prayer list, for both you, your husband and kiddo. xo SUsan

Heather J. said...

Thank you all for the positive thoughts and the prayers. :)

Kathleen McCleary said...

Heather: I'm so sorry you have to go through this, and I'm especially sorry that your little guy has to go through this. If it helps, my father-in-law has had a similar feeding tube (he can't digest many foods due to complications from a cancer surgery several years ago) and once you get used to it it's really pretty easy to deal with. He is on a pump at night that pumps the protein drink in while he sleeps, and has a normal routine during the day. You and your family are in my prayers.

Suey said...

Seriously, this post makes me want to cry, even if you say you are all handling things okay. I can't even imagine it. Good luck with all! Sound like you guys have the attitude that will get you through anything.

And now I'm going to go add you to my Twitter list.

Alessandra said...

Oh, poor James. Good luck for everything. I hope your boy gets better after his surgery.

Anna said...

I think you all have a great attitude and that you're all strong enough to weather this storm. You are all in my prayers.

--Anna
Diary of an Eccentric

marie said...

You are all in my prayers ~ including the grandparents too! I've added your four specific requests to my list ~ please make sure to keep us updated on any others.

On another note ~ I understand I missed out seeing Kiddo in a kilt! I hope there are pictures!

avisannschild said...

Wow, Heather, this sounds intense, but I'm glad to hear that Kiddo is doing well and that he will be able to eat again. My thoughts are with you and your family.

Valerie said...

I will think good thoughts for you all, and a good recovery for Kiddo from the surgery!

Lisa said...

Wow, I guess I'm new enough to following your blog that I was not aware of what you've been going through. You will definitely be added to my prayers. What a great kid you've got!

Beth A. said...

I'm sorry things haven't gone the way you hoped, and you will be in my prayers for a safe surgery and quick adjustment.

Dave said...

Heather, I'll add my prayers for a quick recovery. The ability of kids to adjust to adversity always amazes me. Kiddo's an inspiration to all of us.

Anonymous said...

Heather, Chris and James, We are praying! We Love You all! James is a great kid and we can all learn a lot from him and his attitude.

Lots of Love
The Floyd Family

Anna H. said...

Heather - Reading this today is the first time I am hearing about Kiddo's surgery and feeding tube. I prayed immediately and will continue to pray. Kiddo will be fine. He has the best parents, grandparents, aunts and uncles, cousins and friends to stand by him. And Heather, you and Chris are amazing and strong. Kiddo has no choice but to be as amazing and strong as his mommy and daddy. Love - Anna H.

Rebecca Reid said...

Heather, what a wonderful attitude you have! I'm so sorry your poor little guy has to go through this, but I did just say a prayer for him and for your family!

andrea said...

I added James name to the prayer list at my church. We will be praying for him and a quick recovery.

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