ER visit

Happy Father’s Day! It would have been great to spend Father’s Day as a family, but I am glad Joey is able to spend it with Alyssa and a good friend who flew out to AZ from Maryland. They are spending the day in Sedona. It’s a great place to get away from all the stress.


Yesterday wasn’t one of my good days. Aidyn has had continual problems with his osomy bags leaking. I had to change it three times! The 3rd time was the last straw for Aidyn. He cried so much his ostomy prolapsed. This had happened before, but it didn’t come out as much and it went back to normal within the hour. I called Dr. Puder and he reassured me this can happen and that the ostomy isn’t threatened as long as the color stays red or pink. He instructed me how to push it in. I could go to the ER if it wouldn’t return to normal. Well, after 5 ½ hours, the color got darker, I couldn’t push it back in and the ostomy was bleeding enough to change the color of the output. I called the on call surgeon, explained it all, and was told to come into the ER to have a look. The ER doctor examined the ostomy and decided to consult with Dr. Puder’s team. The on call surgeon, Dr. Hamilton, was chosen to take a look with a colleague and wouldn’t you know it, the ostomy returned to normal. I started to feel foolish, but everyone said I did the right thing. I love how attentive Children’s Hospital is with our concerns.


We continue to have more leakage issues today, but we are less stressed. I guess Aidyn cannot sleep on his stomach until he is reconnected. Which means more sleeping in Mommy’s arms…but that’s always o.k.

Update

Today, Aidyn turned one month old!! A lot has happened over the past 4 weeks. During Aidyn’s second surgery, the surgeon took the end of his small intestine and gave him an ostomy. She also gave him a stoma for the end of his big colon.

Seven days old, after his second surgery.

The stoma is flush with his skin, at the end of the incision. The ostomy is on his left, with a bag over it to collect waste. Aidyn was weaned off all meds from surgery and the ventilator about a week and a half ago. He was started on feeds through a feeding tube in his nose on April 29th.

First he was given a 1/2 cc/hr of Pedialyte. He tolerated it well over 24 hours. Next, it was breast milk, but he dumped it all out into his bag. His feedings were stopped, but poor Aidyn was getting hungry. Finally, Elecare formula was given to him 2 days later, he dumped more than put in this time. On May 5th the doctors stopped his feeds. It was thought Aidyn’s small bowel may need to heal more before he can absorb anything. To help ease Aidyn’s hunger pangs, one of the surgeons suggested letting him have a little Pedialyte on his pacifier. It would keep Aidyn from having an oral aversion. More updates from the past month soon.