Monday, March 23, 2009

Heartache and Hope

Our trip to Boston was tough. I think that Mark and I have always had a good handle on Kyle medically, I have always trusted my instincts with him even when he was in the NICU...long before we would get blood work back saying he was sick I would know..Ever since Kyle started to have seizures last year and was admitted to the PICU I've had this pit in my stomach. Knowing that something just didn't add up, Kyle was diagnosed with dumping syndrome and we started to treat for that, what concerned me was that the only symptom we had was his hypoglycemia, nothing else. We were sent home on more medicines and told that he HAD to learn to eat by mouth. It was pushed and pushed on us until we also began to believe that we needed to get Kyle into an intensive feeding clinic. A few months ago Kyle had an scope placed through his esophagus into his belly to see if we could see anything that would be causing all the belly pain he has. At this time our GI dr told us that his Nissen wrap (that he had to have corrected 4 times) was to tight and that she had a difficult time getting the probe through...she briefly mentioned another surgery may need to be done to correct this before Kyle would be able to eat. We didn't think to much about this, at the time we were so focused on getting Kyle's dumping syndrome under control and his lungs healthy we foolishly put it on the back burner.

Fast forward to Boston , and the motility specialist telling us that Kyle's wrap was WAY to tight and that surgery was not an option, it would be much to risky. He also told us not no food could pass through it and they weren't sure how long it would take for the wrap to loosen up or if it ever would. For those of you that know our story you know that gagging and retching have been a problem for Kyle since birth, he has now been on continuous feeds (20 hours a day through his G tube) for months now...when he's not on his food he's in a alot of pain. The doctor explained that he shouldn't be gagging on continuous feeds and that clearly something is not adding up, he also doesn't feel like Kyle has dumping syndrome and is concerned that his body is now just so used to the food that it reacts that way when we take the food away.

We are still waiting for our scheduled date to go inpatient at Children's the motility dr will place a probe in Kyle's g tube and run it down through his intestines and we will be able to tell what is working and what isn't...we may also leave with a g/j tube which is a tube that will run into Kyle's jejunum (intestines)..There was also mention of going on TPN, but we hope to avoid that since Kyle would need a central line for that and we don't' have very good luck with those...

So that's it in a brief overview...I had a few days of being sick over some of this information and it hurts to think of the lifetime results of all his stomach surgeries, but I'm trying to be hopeful we are in the right place for now and we can get Kyle the relief he so needs and deserves.




Kelly said...



Missy said...

Hey Kate,
I know how hard this has been for you. I know how it hurts your heart to see him go through this. I don't know if this would work for you, but Samuel does all of the choking/gagging/retching with any food into his stomach. We started him on Clonazepam at a low dose which almost completely stopped the problem! I call it our miracle drug! We came off of it when we went to g/j feeds, but have had to go back on it as his motility has gotten worse and bile backs up into his stomach and started causing the retching again. We love Clonazepam here! Just a thought for you.

Good luck. We pray for Kyle and your family every day!


Aileigh said...

Big hugs to you, my friend. Praying, hoping, pleading for relief for that sweet boy... and you.

Love and Hugs,

littlewonders said...

Oh Sweetie, this has been so hard on all of you........but you are the one I want to reach out and hug right now. You are a wonderful mother, and yet sometimes, often, you do not get to stop and enjoy the day to day moments of your three Saints, and for that I am so sorry. Big continues to be in my prayers, every day.


Lauren said...


I'm sending huge hugs your way. All that you have been through breaks my heart. It's so undeserved. I hope for all good things for you, Kyle and your whole family.


Robin said...


I so hope and pray that Kyle gets relief soon. You are such an amazing woman, you deserve some relief too!


The Phamily Matriarch said...

Oh Kate, sweet Kate,

I love you dearly, and pray that this doctor and this inpatient session will give Kyle some relief that he needs and so deserve.

Thinking of you and hugging you tight.


Anonymous said...

Thinking of you. As I read this it's so hard to believe that more surgeries might be in this boy's future. It all seems so unfair.

And yet, through it all you ALL are so brave. I know you will get through this and come out on the other side with a smile.

In the meantime, Kyle and your whole family remains in my thoughts.


Weerock said...

Kate -
If I could give you all the relief you so much need and deserve...I'd do it in a heartbeat. I hope you know that.

You still amaze me - you are so strong...when I'd want to sit and cry.

I think of Big all the time. He deserves so much.