Surgery update 6/12 post #69~ Prayers for my DS please

[triplefigs]

Yeah, I can see how that is a very difficult situation. You are kind of "treading water", hoping that nothing will happen.
Hope things go well.

Thanks, Sue. I am totally depressed. Knowing he is refluxing again is horrible. He literally almost died from it the first time around, so for this to be starting again is making me sick. DH is very upset with the results too. Having it be "medium" was our worst fear. Yes, it is bad, but we won't fix it with surgery. The first time, it took us almost 2 years of agony, hospitalizations, etc to convince the doc to do the Fundo surgery. He is one of those that surgery is absolutely the last resort and will try anything and everything else first. After the Fundo, Rees was a different child and it was a complete success! So now, I'm worried he's "playing" us again and will make us try everything else under the sun before redoing the surgery.

I've actually contacted my good friend who has a personal friend that is a Peds GI doc and surgeon down at Emory University Med School (we live in Atlanta). Last time, he suggested the Fundo a year before we got it. I'll be interested to hear his opinion. DH and I both think there is more to this than the tests showed. I think my mom instinct has kicked in. I'm worried, and I don't know why. Thanks for listening to me ramble. I know I should think this is good news, but I just feel like something is amiss.

 

[eeyore45]

Denise, you took the words right out of my heart!! Mom's do know!! Its the hardest thing in the world, we spend our time denying that "gut instinct" feeling, or we feel guilty or overprotective... I get teary eyed just thinking of some of the things I've been thru with my kids!! Because I've become like a mama Tigress I sometimes know that I do "over react" but my kids know I am there for them... its a long road at times...

I also suffer from reflux, but of course not near the extent Beautiful Rees is - I do know some of my "trigger" foods - rax carrots and hot dogs of all things you wouldnt suspect - so I can only imagine how you and Rees communicate - its good to have a mom in your corner!!

Glad you are getting a 2nd opinion!!

GO MOMS

 

[minnie61650]

I am sending and prayers your way. I hope things get better real soon.

 

[Angel16]

Denise, I was so glad to read that you are getting a second opinion. Children can turn on a dime with their health. Sitting and waiting is not the way to go. Your Mom instinct is working perfectly.

Rees and your whole family are in our prayers. Remember he is a strong little boy. He loves life and has come through many things in his short years. We are all praying for his strength and good health. I will also add on decernment for your doctors, you and your husband.

My DH's life was saved almost eight years ago by me being the over-protective wife that MADE the nurses and doctors take my DH's problem/systoms seriously. God give us that instinct to protect for a very good reason. Try to get some rest when you can.

Prayers and Hugs,

Angel

 

[sejejoemmiev]

How awful for you and your son to be going thru this again. I pray for a quick resolution so you can find answers to what is going on and to get rid of his pain once and for all. I know this is a difficult time for you right now, but it is hard to find someone who has first hand experience with a child who has a g-tube. I have never traveled with my child that has a g-tube past the city Childrens Hospital and our upcoming trip is giving me such anxiety that I just want to cancel it....AGAIN!! My daughter is 8 months old and has a g-tube. She is basically 100% fed this way. She gets her formula continous overnigt 8pm-8am and 3-4 feedings during the day which is via a pump because she cant tolerate the 4 ounces any quicker than over 1 1/2 hours. She gets OT twice a week for feeding and now takes anywhere from 0-10 bites of baby food a day depending on how stubborn a day she is having. We are scheduled for a 7 day cruise 2/2007 and 5 days in the parks. She will be 1 1/2 at the time. My hope of course is that she wont be dependent completely on her g-tube at that time but realistically that is a huge possibility. We have promised our 3 other kids this trip and don't want to cancel because we already cancelled the original date for this trip of 2/2006. Have you done g-tube feedings at Disney. How is this going to work? Is it possible? HELP!!!!!!!!!!!!!!!! Suggestions please! Jessica

 

[triplefigs]

We went today for a 2nd Endoscopy and Abdominal Ultrasound with the Pediatric Surgeon to get a 2nd opinion. Rees did very well today, and I was so proud of him. He had the ultrasound at 9am this morning, but didn't get taken for the Endoscopy until 2pm. It was a really long day for him. As far as weight, Rees has lost another pound in one weeks time.

After the Endoscopy, the surgeon said the esophageal Diverticula was very small and the Fundo actually looked fine. However, on the Abdominal Ultrasound, they found that Rees' gallbladder is completely full of bile "sludge". The surgeon said it indicated an Acute Gallbladder, meaning the symptoms appear suddenly. A gallbladder attack mimics all the symptoms Rees has been having. So, on June 5 (unless something else changes) Rees will have surgery to remove his gallbladder and clean out all the bile ducts. The surgeon will try to do it laparoscopically if he can. Rees will spend one night in the hospital and have a week recovery at home. DH and I are so hopeful that this may be the solution to Rees' pain.

Thank you all for the prayers.

 

[Nik's Mom]

I will continue to pray for you. I had my gallbladder removed a couple of years ago. I was having a lot of pain, and kept feeling like I had to throw up. You just feel lousy! And there is some pain after the surgery, so make sure you ask about meds to keep him comfortable. Please continue to keep us posted.

 

[tacomaranch]

Our prayers are with you and Rees and your family. I know it is not the answer you want to hear but you have an answer of what is wrong and they can help Rees get better. Please do keep us informed as to the outcome. You are such a good mom to listen to your instincts and follow up. Big Hugs to you!

April

 

[SueM in MN]

That is certainly not what I expected, but it does expalin his symptoms.
Lots and LOTS of pixie dust to you, your DS and the rest of your family.

 

[pjshaff]

Hope all goes well with the surgery, are you having it done at Children's?

 

[Angel16]

Denise, Rees and your entire family has been in our prayers and will continue. I am positive that Rees will do great. Please let us know how things are going leading up to and after surgery. Sending you and prayers.

Angel

 

[eeyore45]

Thank you Denise for sharing - thank you for the opportunity to intercede on Rees' behalf in prayer!! I will continue to keep Rees, and your family in my prayers - may the time pass quickly, and painlessly by - may you continue to feel His peace, and be comforted!!

 

[BeccaGrace]

Just bumping up to wish Rees good luck tomorrow!
We'll be praying that all goes well with the surgery and he's feeling better soon
Please let us know how everything went when you get a free moment.

 

[triplefigs]

Thanks, Sara! Surgery is at 10am tomorrow morning. He will spend one night, so hopefully I'll be home on Tuesday. My mom flew in tonight to watch the other 2. I appreciate all the prayers and good wishes. I will post as soon as I can.

 

[Michigan]

Will be thinking about your family tomorrow. Praying for a successful surgery and fast recovery.

Cindy

 

[minnie61650]

I am also keeping you ,Rees and your family in my thoughts and am hoping all goes well and wishing him a speedy recovery.

 

[isla bonita]

Hope all goes well and quick. Thoughts are with you.

 

[Belle1997]

Praying that the surgery goes well and he is back to his old self soon.

 

[Steamboat Marti]

THIS JUST IN FROM DENISE VIA DH BLACKBERRY AT THE HOSPITAL:



--------------------------------------------------------------------------------

Rees is out of surgery in recovery. The surgeon just came to talk to us. He took out the gallbladder with no problems. He also found a twisted piece of bowel that had adhered to the abdominal wall. We. Will get the pathology report on wed. Rees should come home tomorrow. PM went to surgery with Pooh bear and Rees. I'll update later.

Can someone post this on the disability board on my thread for Rees? Thanks.

 

[BeccaGrace]

Steamboat Marti--Thank you so much for the update; that was so thoughtful of Denise to think of letting us know from the hospital.

That's wonderful that the surgery went well. I can't believe they send kids home so quickly! But I guess being home is much better than being stuck in the hospital.

I'm guessing PM is Pal Mickey? How cute that he had his stuffed friends there to keep him company

We'll continue praying for Rees to have a quick recovery--so happy to hear everything went smoothly so far!