Living with HD

This whole blog is of course dedicated to our life living with HD. These are just the first few new moments that share about how we first lived with Hirschsprung’s Disease

Here is our little guy enjoying some California rolls.  We keep raw tuna out of his diet, but his normal go to meal is chicken teriyaki.

Two weeks since surgery!

It has been two weeks since Joey Coop’s pull through surgery and he is doing GREAT! I feel like his feeds are almost back to normal (he was eating less for a little while) and he is pooping GREAT! He poops alot and it is very acidic so we are changing diapers at least every [...]

HOME!!!!!!!!!!!!

We decided to drive straight through. It took about 12 hrs door to door which included several stops to feed Joey Coop. The kids did good. JC did much better than Ella who was NOT happy to be strapped in; even the DVD player was not working to keep her quiet. I am suffering from [...]

we are…….

at the hotel in Cinnci!!!!!!!!!  Joey Coop was discharged today.     I am a nervous wreck, praying that everything really is ‘fixed’.  We head home tomorrow, be home on Wednesday- late afternoon.  I am EXHAUSTED- never felt this level of tiredness-going to bed.

Day 4 post op

Very busy day today. JC had a couple more bouts of vomit in middle of night so we were off to Xray first thing this morning. Xray showed some dialation, gas and poop that was not moving through very quickly and causing a back up which in turn was causing the vomit. SO then we [...]

WE HAVE POOP!!!!!!!!!!!!!

Today was a little rough as Joe made me leave and take a break from the hospital (and to have a little Ella time- which was AWESOME!) BUT of course on the day I decide to leave Joey Coop has some bouts of throwing up. So they ordered an xray to make sure no blockage [...]

Day 2 in pics & video

We got some outside time today (believe it or not).  The fresh air was great and it knocked the groggiesness out of our little guy.  Ella Sophia ran around in circles and had fun too.   Here is our little guy shortly after the outside adventure and right after the nurses took that not-so-fun tube [...]

post-op day 2

Had a great night last night. Joey Coop slept for us and all of his monitors cooperated and did not make too much noise. He is on new pain meds and they are still causing some itching so we have meds that help to lessen the itch! Today he will be taken off ng tube [...]

forgot to mention…surgery went AWESOME

he did GREAT in surgery.  It only lasted 3 hrs or so.  It went exactly as it was supposed to w/ no complications.  The patholgist confirmed that it is only 30% affected- so that 30% of colon is gone and his ostomy was pulled down and re-attached to rectum/anus.  His colon, which usually looks sort [...]