Wednesday, October 29, 2008

G-tube

Hello fans.
We are back with more updates on feeding tube procedure that was canceled for today. We are Thankful to our Stem Cell Team for referring us to such a great operating Doctor who initially placed pick line and port for Sammy before transplant. Not only we don't feel rushed to make a decision,this Doctor is taking necessary steps to ensure the best possible chances for a successful G-tube placement for Sammy. We had decided to subject Sammy to our only option surgery with more complicated procedure do to acid reflex condition.In this case Sammy can still eat as much as he can solid foods, he likes tasting flavors this is one of not many functions he has left to enjoy.
Sammy has been receiving overnight fluids through IVs in the past 10 days.Prolong administration of IVs carry certain risks too ,so our only other option is to have a feeding tube there is no other way .
As we worry about his upcoming surgery and making necessary appointments ,Sammy has been eating less and less every day. Sometimes its more than 5 bites ,sometimes it's only 2.We have to be extremely careful with liquids.We are still trying,but its too hard to manage it -we are afraid of aspiration/ going in to wrong passage -lungs in that case ammonia is fatal/
This new developments leading us to understand that we are on the right track and today he is strong enough to go through operation and have best possible chance to heal faster.
Sammy enjoyed his bath time. He went back to school today for the rest of the week .He loves school-when I dressed him up I said-'You look,so handsome-please behave don't make girls crazy at school,because next thing teachers start calling me with your usual mischief -just like old times Sammy!' He just made a sound -letting me know he got it.
We have learned how to use precious moments with Sammy and every chance to make the best of it .In my eyes -life is made of moments-moments that you remember the most,that stay in your heart forever. Our challenge is to find strength to stay positive .Recognizing the fact that we have exausted all treatment options and very little depends on us at this point,we can - comfort him,tell him that he is loved,caring for him and praying for a miracle.

XOXO Sammy and Mom.

10 comments:

Anonymous said...

I checked this blog every morning, You are a very strong person. May Hashem give the strength and wisdom to make the right decision.

Anonymous said...

You and your entire family are in my thoughts and prayers every minute of everday.. I am praying for a miracle....Stay strong and know that Sammy knows what wonderful parents and family he has.

xoxo

Anonymous said...

sammy has a marvelous mom and dad
we marvel at your tenacity, your courageous spirit and your love of life. for all of us out there that read your blog, hear bits and pieces of your story, know u or have never met u, yet pray for sammy almost daily, you have become our mentors and rolemodels. sammy's unusual odyssey has kindled our hearts,awakened our minds and inspired our souls

Anonymous said...

may hashem help you and may chaim shmuel ben chana receive a complete and speedy recovery

Anonymous said...

Just take one day at a time, May Hashem help Chaim Shmuel Ben Chana to receive complete and speedy recovery

Anonymous said...

We all believe that food is life and that bread is the work of human hands. It is simply nutrition, what sustains us. In many ways, it's what we receive in nutrients, and not how we receive them, that keeps us strong and gives us the ability to grow. Although it is difficult to think that a g-tube is the best route, the goal of sustancance does not change. I pray for you and Sammy in this decision. Mary

Anonymous said...

Dear Gelena,

I read your blog on a regular basis. You are incredibly brave and strong to be able to endure this difficult journey. Your love, positivity and persistence are the reason Sammy has come this far. Although it may be difficult to see anything good about this situation, the one thing I can think of is that it has brought you together - as mother and son, and as a family. During this past year, you two have shared countless special moments together (which you probably never would have otherwise, due to life's lightning-fast pace).
I am sure that there are of course many more to come. Always know that they will be with you forever...nothing can ever take them away.

Love,
Diana Khrapatch

Anonymous said...

may hashem comfort you in this difficult time. May hashem give speedy recovery to chaim shmuel ben chana. We will continue to pray for his body and soul. May hashem give you much strength and courage

Anonymous said...

WE VOTE FOR CHAIM SHMUEL

Anonymous said...

you are not alone. I continue to daven. May hashem help you and chaim shmuel ben chana