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

[ilovemickeymost]

Blessings being sent to your family. Thought you might be able to use a Happy Banana Dance I hope it made you smile. Smiling is the only way we've gotten through all of our stuff.

 

[NJOYURLIFE]

Sending lots of prayers and pixie dust.

 

[BETTYDISNEY]

hang in there for reese.

 

[michelle9343]

I just wanted to send you a . Only other moms with special needs kids can begin to understand how hard this is for your family. I will keep you all in my prayers.

 

[Harmony]

May the Lord give you peace, strength and faith to get through this. Lots of hugs and prayers to you and your family!

{hugs}

 

[DisneyMim]

Sending thoughts and prayers.

 

[Angel16]

Denise, You, Rees and the rest of your family are in my prayers. I pray for Rees to have strength, the doctors to have decernment in his treatment and that your whole family may have peace during this difficult time.

Please keep us informed if you have the time and energy.

Hugs and prayers,

Ann

 

[SueM in MN]

Just realized today was his testing. Hope things went well and they found something that can be easily taken care of.

Sending more prayers and pixie dust your way.

 

[eeyore45]

Denise, I havent had time to post, usually read when I'm at work - just wanted you to know I added my prayers to the many others here - surrounding Rees and your family, and the doctors in prayer...

Hope he is resting comfortably!! (as well as you, its hard being a mom!!)

 

[Nik's Mom]

Hi,
I just read your post and I'm wondering how your ds is doing today? Our prayers are with you. May God give you and your family strength!

Please keep us updated. You have lots of Dis friends thinking of your family right now!

 

[triplefigs]

Thank you all so very much for the prayers and PMs. The DIS is an amazing place, but the DISabilities board is a FAMILY! You truly touched my heart.

The endoscopy went well yesterday. He found one small Diverticuli in the esophagus, but everything else including the Fundo wrap looked good. He took several tissue biopsies and we'll get the results on Tuesday.

We've been doing the pH probe test since yesterday and the acidic diet. So far, I've only seen the monitor drop below a pH of 4.0 once (indicating reflux). That actually has DH and I more worried. If it isn't reflux again and the wrap is ok, then what is causing these symptoms? Then he'd have to have more testing. I know it sounds weird, but we're praying today he does reflux so we know exactly what is going on, and he won't have to go through more tests.

Thank you all so much again for the prayers and well wishes. I will keep you posted when I find out anything else.

 

[SueM in MN]

I know it sounds weird, but we're praying today he does reflux so we know exactly what is going on, and he won't have to go through more tests.

I think we all know exactly what you mean - sometimes it's better to have something bad happen because at then at least you know what is going on and can deal with it. You feel guilty hoping that your child will suffer, but his hurting might be the only way to find out what is happening.
The most frustrating is when you know something is wrong, but you don't know what. And, since they don't know what, thre are no good options for treatment.

Thanks for the update and hope things get sorted out soon.

 

[eeyore45]

I agree with Sue, I do understand the thought, better the devil we know, than the one we dont!!

Continued prayers and pixiedust!!

 

[Angel16]

Denise, Just wanted to let you know Rees and your entire family continue to be in our prayers.

 

[daisy_77]

Your son and the rest of your family will be in my prayers

 

[triplefigs]

Thank you all so much. Rees refluxed a few times this weekend on the pH Probe test. I'm supposed to hear from the doctor tomorrow afternoon with the biopsy results and pH probe results. I have no idea what he will say. I'm not sure once you've had a Fundo if refluxing 4 or 5 times is mild or severe (as he's not supposed to reflux at all). I will keep you posted when I find out.

Thanks again for the prayers.

 

[lucyanna girl]

Just saw this thread. I am so sorry your sweet little boy is going thru such a rough time. If only we could take their place and be sick for them. I am praying that he will be well soon. Please keep us updated.

 

[triplefigs]

Just saw this thread. I am so sorry your sweet little boy is going thru such a rough time. If only we could take their place and be sick for them. I am praying that he will be well soon. Please keep us updated.

Thanks, Penny. I'm so glad Sarah is feeling better too. How scary for you all!

 

[triplefigs]

The doctor just called with the results from all his tests. It is a mixed bag. Rees refluxed 22 times during the 48 hour period. He shouldn't reflux at all with the Fundo, so the reflux is breaking through. The doctor said he feels that it is borderline with what to do. He would prefer to hold off on surgery until Rees is older, so that the Fundo would hopefully last through adulthood. The Fundo tends to break down as kids grow, so the longer you can wait the better. So the good news is he will not have surgery immediately. But the bad news is that there is a problem again. We will try to manage it with diet and medicine until the point that doesn't work anymore. We are to watch Rees for failure to gain weight, asthma attacks, pneumonia, and episodes of vomiting/retching. I'm glad we know what is going on now, but I feel like we are caught in the middle at this point.

I appreciate so much everyone's prayers.

 

[SueM in MN]

TWe will try to manage it with diet and medicine until the point that doesn't work anymore. We are to watch Rees for failure to gain weight, asthma attacks, pneumonia, and episodes of vomiting/retching. I'm glad we know what is going on now, but I feel like we are caught in the middle at this point.

I appreciate so much everyone's prayers.

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.