Topic: O/T but urgent... (Read 688 times)

HealingDaughter · « **on:** January 17, 2012, 09:57:25 AM »

We need all your prayers and/or good vibes we can get. My son (who has CF and short bowel syndrome- only 10% of his small bowel left) is having more intestinal issues. This time it's pretty urgent. We will be making the 8 hour drive either today or tomorrow to his doctors two states away. Looks like he is going in for a scope and some other procedures to help determine what is going on and see if he needs another bowel surgery. (He's had 5 bowel surgeries so far and he turns 3 in March :-/). He's been through transplant eval and they decided to give intestinal rehab a shot. It has worked well for 2 years, but I think we've finally hit a wall with his progress and he's grown so much that his bowel cannot process all he is taking in for nourishment, which means the next operation will be a bowel lengthening procedure which = about 6 weeks in recovery/ 4 of which will be in the hospital.

This is all rather daunting considering the life-threatening circumstances in which all of his other operations were performed in, but I have to keep telling myself that we always knew this day could come and it's not nearly as dire as in the past. He's healthier now, and stronger, and much more able to fight infection and survive, and we're at the best hospital in the country for intestinal rehabilitation. It's all just scary, so keep us in your prayers, send us all the good vibes you can. Thank you so much!

alatariel · « **Reply #1 on:** January 17, 2012, 10:15:05 AM »

Sending you all the positive energy and "white light" I can.

daisyk9292 · « **Reply #2 on:** January 17, 2012, 10:28:26 AM »

I will say a prayer for all of you. What a courageous little boy he must be. Just like his mama.

Rosemary · « **Reply #3 on:** January 17, 2012, 11:38:17 AM »

Sending love and light to your boy H.D. he has been through such a lot already .

my youngest boy had 2 bowel ops and i throught that was bad enough .

Never again · « **Reply #4 on:** January 17, 2012, 11:50:56 AM »

Sending much love and strength to your little boy and to you. May all go well.

Julia · « **Reply #5 on:** January 17, 2012, 11:58:26 AM »

Healing Daughter,

Prayers for all of you. I will share this with my prayer group tonight as well. My neighbor's son had this as well at 6 mo, with surgery, and I know how serious it is.

Julia

Chime · « **Reply #6 on:** January 17, 2012, 12:26:17 PM »

{{{

Prayers for you and yours Healing Daughter

}}}

Chime

Legs · « **Reply #7 on:** January 17, 2012, 12:27:54 PM »

Dear HD,
Sending my best for strength for you and your son and your loving family and friends....I hope you all remain healthy and strong for this time especially. Be careful on the road and home safe.

xoxo, Legs

CZBZ · « **Reply #8 on:** January 17, 2012, 12:45:23 PM »

(((Healing Daughter and Family)))

CZ

Imogene · « **Reply #9 on:** January 17, 2012, 03:49:32 PM »

I wish him a successful surgery and a safe recovery. And I'm so sorry your family has to go through this.

pearlsb4swine · « **Reply #10 on:** January 17, 2012, 04:11:36 PM »

I am praying for you, your husband and your little boy.

Pearls

JennyWren · « **Reply #11 on:** January 17, 2012, 04:57:25 PM »

Ohhhhh....thinking of your brave brave little fella.....and willing things to go as smoothly for you all as possible.

One more huge hug coming your way too

...please do keep us updated when you can.

tango3 · « **Reply #12 on:** January 17, 2012, 05:02:19 PM »

HealingDaughter · « **Reply #13 on:** January 19, 2012, 06:41:52 PM »

Thank you all. We are doing ok. My son is such a little trooper. He's bounced back well after an invasive procedure yesterday. Looks like we'll be here at the hospital at least until Tuesday. They are running a few more procedures and tests, but so far only more puzzling symptoms have popped up the more they have looked. Hopefully tomorrow some biopsies will come back and we will have some results. My son will have a procedure in the morning and possibly one on Monday depending on how tomorrow unfolds. We saw the dr. today who did his endoscopy yesterday and we are trying some adjustments to medications and the structure of his food intake. Hopefully it will have a positive effect. I will update once I know more. Thank you ladies for all your well wishes and prayers. It means so much to us!

alatariel · « **Reply #14 on:** January 20, 2012, 05:12:59 AM »

Thanx for updating, I've been thinking about you & your family.

I'm sending more positive energy toward having the results you need from the adjustments.

pearlsb4swine · « **Reply #15 on:** January 20, 2012, 12:55:43 PM »

Healing Daughter, so glad that so far, so good. Keep us posted, and we will be sending lots of healing thoughts and prayers your way.

Pearls

CZBZ · « **Reply #16 on:** January 20, 2012, 01:18:13 PM »

Oh, thanks for posting again, HealingDaughter.

Its so good to hear that your little son is doing well with this procedure. Bless his heart!

CZ

Rosemary · « **Reply #17 on:** January 20, 2012, 02:11:18 PM »

glad to hear your son is ok and going to have the doctor look at his food intakes etc after the endoscopy (not a nice procedure to have if through mouth )

sending you love and strength

JennyWren · « **Reply #18 on:** January 20, 2012, 05:07:30 PM »

Sounds like they are do a thorough job in investigating. And you are all in good hands.

Hope the outcomes are as positive as can be...and the doctors can come up with helpful answers as quickly as possible.

What a brave lad. Thanks for taking the time to let us know.

Huge hugs to you all.

newglasses · « **Reply #19 on:** January 21, 2012, 07:52:36 PM »

HealingDaughter · « **Reply #20 on:** January 28, 2012, 08:14:17 PM »

We are back home. Got home Tuesday about 11 p.m. and have been recovering from a crazy week. I had the audacity to get sick while we were there. I woke up in the middle of the night and could barely stand up, walked to the bathroom and was bending over the loo to puke and apparently went out like a light. My husband heard a thump and looked to find me with eyes rolled back and unresponsive. He thought I'd choked so he started doing the heimlich manuever. I woke up to him doing that to me as he was yelling my name. Freaked him out good... LOL. Once I woke up, I vomited a bunch and then my husband sent me to the ER. After several tests to make sure I hadn't had head trauma or a heart episode, they said I probably had some kind of stomach bug and that I'd wretched so hard it caused vasovagal syncope. They juiced me up with IV fluids and meds and sent me back to my room.

My son is doing ok but gave us quite a scare on Monday, just two days after I ended up in the ER. His belly distended and he started vomiting- the night before we were due to come home. We went to the ER again there at the hospital (since we were staying at the hospital's hotel anyway) and ended up getting him fluids and monitoring him for a few hours until they deemed him stable enough to return to our room before our appt. with doc the next morning. We got a few hours sleep in then saw his doctor. My little boy has been gaining weight since we got back and hasn't had any more vomiting episodes, so I think we're chalking it up to something he ate? I don't know.

The good news from his doctor is that he doesn't require surgery yet. Bad news is that it seems he might have to go back on IV nutrition with a central line (which he's been off of for about 15 months) just temporarily so that his bowel can heal properly and so we can keep up nutrition-wise with his growth spurt. Right now he is on 13 medications that he takes every day, some of them 3 times a day. The central line care is a lot to take on with everything else. I've done it in the past and can actually do sterile dressing changes and everything that a nurse would, but there's risk of blood infection and it's extremely important to monitor the placement and dressing. I just have to keep telling myself that I've done this before. I can do it again.

Part of training for being a PA I guess... hahaha. God has a funny sense of humor sometimes. Thank you to all of you for your sweet words, good vibes and prayers sent our way. We genuinely appreciate them!

RB22 · « **Reply #21 on:** January 28, 2012, 08:26:37 PM »

Coming late to the party, sending my thoughts and prayers your way.

Hugs too,

RB

Legs · « **Reply #22 on:** January 28, 2012, 10:24:19 PM »

Yikes! How scary and exhausting for you all. I didn't know you were in training to be a PA. Congratulations to you on THAT! Quite an achievement. Your patience and dedication hopefully will be rewarded in the right way. It sounds like e tremendous job. I salute you.

xoxo, Legs

alatariel · « **Reply #23 on:** January 29, 2012, 06:11:55 AM »

Yeah, what Legs said.

Chime · « **Reply #24 on:** January 29, 2012, 06:30:11 AM »

sorry to hear you weren't feeling well on top of it all...
so glad things are moving in the right direction
I hope things continue to get better and better for all of you
every day in every way

Chime

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Author Topic: O/T but urgent... (Read 688 times)

daisyk9292

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