Category Archives: CCMC

Let’s talk GI, part 2

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*If you missed Let’s Talk GI, part 1, you can read it here.

As the years have gone on, sadly, Joey’s gastrointestinal issues have continued. We STILL deal with chronic diarrhea. Along with that aspect of his problems, 5 years ago we faced an even larger one.

Right around the time we moved into the current house we live in now, we noticed an extreme change in Joey’s behavior. He was acting out, slamming his head into walls and the floors, eating less and less, he was just not himself. We chalked it up to a new house and school. After a while, deep down I knew there was something else, I just didn’t know what.

Due to him not eating, we had discussed a feeding tube. He was losing weight. It was a truly terrifying time for everyone. I had taken him to see his GI doctor, she was at a loss too. We decided start by scheduling  another colonoscopy/endoscopy to see if perhaps there was something wrong that she could see.

I’ll never forget the night all hell broke lose. It was a Sunday night, my husband and I had just put the kids to bed and had just settled into bed ourselves. I had actually started to nod off to sleep when Joey started screaming, crying and doing this wreching/hiccupping sound. Nothing was helping, we couldn’t calm him down.

I packed a bag and rushed down I-84 towards CT Children’s Medical Center with Joey in the backseat. I KNEW something was not right with my boy and that it wasn’t good. I made it to Hartford in record time. Thankfully he was taken straight back when I carried him in the hospital.

There’s nothing WORSE than having your non-verbal child not be able to tell you where he’s hurting from. He couldn’t even point. He just laid there screaming, trying to throw himself out of the hospital bed due to the severe pain. Nothing was helping his pain, not even Morphine.

It took 24 hours to finally diagnose his problem, every x-ray and ultrasound came up negative. His stomach was soft to the touch, not distended. No stomach bile came up until around 22 hours into the ordeal. The doctors finally listened to me and ordered an Upper GI with a small bowel follow-thru.

The radiologist doing the test looked at me and explained that his small bowels were totally obstructed where the bowels and stomach connect and that Joey needed to have surgery immediately.  He has showing me the images on the screen and it was so obvious were the blockage was.

I’ll never forget stepping outside for a moment to call my husband and then my mom. I finally broke down in tears while talking to my mom. I was terrified. I felt like I had failed Joey by not pushing the doctors more and finding this more quickly.

Then they pretty much took Joey straight from Radiology to the Operating Room. I followed my boy who was still screaming, laying on a hospital stretcher down the long white hall, up an elevator, and went as far as the staff would allow me before someone took me to the waiting room.

By that point, I was exhausted. I hadn’t slept in almost 48 hours and I just handed by baby off to the hands of the surgeon to try to have his bowels and his life. They didn’t know what they were going to find when they opened him up. My husband was frantically trying to finish up all of his appointments at work so he could join me at the hospital. My mom was on her way up to Connecticut from Ohio and my mother-in-law had Leah and Aiden. I was at the hospital alone and scared. Finally, one of my friends joined me at the hospital. I think I took very brief catnaps during the two hours he was in the OR.

Once he was finished,  the surgeon, Dr. B came into the waiting room and we sat down and he explained that Joey had developed adhesions (scar tissue) from his Malrotated Intestines surgery and that the adhesions had wrapped totally around his small bowels and pulled them all down from where they were suppose to be. Thankfully, Dr. B was able to save Joey’s bowels! The blood supply flow had just been cut off, had it been any longer, it would have permanently damaged the bowels and Joey would have lost a portion of his small bowels.

Right around the time my husband got to the hospital was the time we were able to go back to the recovery room to see Joey. He looked so small and fragile with all of the wires and drainage tubes coming out of him. He slowly started to wake up and we were taken back to his regular hospital room. After we thought he was doing ok, my husband went home to be with our other children.

Once he was settled in his room, I noticed that his face was swelling very quickly and he was turning beet red. I quickly pointed this out to his nurse, who then proceeded to pull the call button cord out of the socket which made an alarm go off throughout the entire floor. He was having an anaphylactic reaction to something! Doctors and nurses came out of the woodwork and were in the room so quickly. I could feel my legs starting to shake, I started collapsing, I thought I was going to loose him!

One of his nurses took me out into the hallway while they were able to stabilize him. Once I gained control of myself, I went back in. They think he had an allergic reaction to the antibiotic they gave him in the OR, it was one he had never had before.

Joey ended up being in the hospital for 9 days. He had to drink, eat, walk, and go #2 before they would let him go home. Finally I think it was around day six he started taking small steps. Day seven I put out a call to the clergy department, the most wonderful Catholic priest came up to visit us a few hours later. When I explained why Joey was still in the hospital, he said the most awesome thing, “I will pray for poop.” And guess what, about 15 hours later, we got poop and the next day got to go home!

Once he was home, things got interesting, we had to keep Joey from getting into too much trouble while his incision and bowels healed. We had to keep Leah and Aiden (who was only 1 year old) from climbing all over their big brother!

After about 2 weeks, we sent him back to school and things finally got back to normal. He had stopped hitting his head into the walls and floors. His appetite slowly improved, and he started gaining weight back. Our little boy was coming back to us! And with that, I’m going to end this portion of Joey’s GI story and continue another day.

To be continued…

 

Heads, Shoulders, Knees & Toes…

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I had noticed during one of Jojoe’s Special Olympics practices that his gate while running was totally off. He’s always had a waddle to his walk, almost like a strut, and at times clumsy, but I guess until he started running in a straight line down the track at practice, I never thought about it. So I took a video and showed his pediatrician who suggested that I make him an appointment to go see an Orthopedist. We had already ruled out a tethered spinal cord a few years ago when another doctor noticed he’s a “toe walker.”

Some children with Down syndrome have congenital knee, hips or feet problems so I just wanted to rule out any possibilities with Joey. Being a parent of a child who’s had past hidden medical problems (malrotated bowels, obstructed bowels, ect…), I couldn’t help but be paranoid at the possibility of something else being wrong.

I promptly made an appointment with an Orthopedist at CT Children’s Medical Center, thankfully, they had an opening for the following week (which today was the appointment).

So this morning, we headed up I-84 to Hartford to his appointment. Dr. T and his resident were both super nice and were extremely thorough. First the resident had me run with Jojoe up and down the hallway a few times and saw what I was talking about, so then an x-ray was ordered. And let me tell you, getting an x-ray of anything on Joey is almost impossible to most x-ray technicians except for a few at CCMC and by the grace of God, our favorite one was there so thankfully it only took one try to get a clear image!

Dr. T looked over Joey’s x-ray immediately while we were there and said that there’s  no hip dysplasia or dislocations. The only thing noticed was a cyst on each hip, which you can see on the x-ray below. One is a little larger than the other, but nothing that needs to be taken care of immediately, if ever. Also, it was mentioned the way Joey’s hips are shaped is why his legs so inward a bit resulting in his odd gate.

As for the toe walking, Dr. T said we could do braces on his feet/legs but with Joey’s sensory issues, we both agreed that there’s no way he would tolerate wearing them, just to try to re-direct Joey when he starts toe walking and hope that over time, he will stop on his own.

Today as we left CCMC, I breathed a sigh of relief thankful that there’s nothing major wrong with Joey, just two little cysts which we made a follow up appointment for 6 months from now to see if there’s been any changes in them. Untitled