The Peanut Gallery

Wednesday, December 3, 2008

Home with a G-Tube

Wednesday, December 3, 2008
So we have been home for about a week and a half and things could not be any worse. Kennedy had a G-tube surgically put in on Tuesday, November 18th. The surgery went differently then expected. Kennedy was supposed to be given an anesthetic through her IV, however, at the last minute everything changed. The doctor was not comfortable operating on Kennedy unless she was put out with a general anesthetic and put on a vent, he did not trust her breathing. I went into her surgery expecting one thing and was thrown for a loop with this news. I really had no choice so I agreed after a lot of reassurance from the head anesthesiologist and Kennedy's GI doctor. I was so scared to see my little baby on a vent again.

I sat in her recovery room for what seemed like two hours but in reality it was only 30 - 35 minutes. When they wheeled her into her room there was NO VENT she only had an oxygen mask on - Just in case!!! Thank goodness. The nurse said Kennedy did great. They were able to get her off the vent right after the procedure was complete.

The next 24 hours was rough for Kennedy. She was in alot of pain from the procedure. Not to mention she was going on over 40 hours with no food. The first night we ended up giving Kennedy one dose of Morphine to ease her pain. She was screaming non stop and her heart rate was out of control. We didn't want to risk any issues with her blood pressure as well.

The first four feedings she had were pedialyte. She did really well on it. From there we progressed to breast milk for four feedings. She also tolerated that really well. Finally she had to be able to tolerate the breast milk with one teaspoon of enfamil 22 cal formula in it. She threw up once with that but overall seemed to tolerate it really well.

The first four or five days of her being home were good. Kennedy seemed to be doing really well. I think she was really happy to have her feeding tube out of her nose. It gave her a sort of freedom that she had never had before. However, after Thanksgiving our luck began to change. Kennedy has been doing horrible. She is crying and throwing up non stop. She can not keep anything down. No matter how much or how little you feed her she still throws up. In addition, she has been screaming all day and all night. She is even waking up from a dead sleep screaming at the top of her lungs. I don't know if she is sick (her temp is fine), if the tube is bothering her, if the milk is not mixing well.....I DON'T KNOW. To make matters worse all of Kennedy's doctors are either out on vacation or are booked until next week.

Last night I had an idea.....after doing a lot of research I was reading that other people who have kids with reflux problems or with G-tubes got some good results by adding rice cereal to their babies formula or breast milk in order to thicken it up. It is supposed to help them from spitting up and keep them feeling fuller and more satisfied. So I started this last night and so far so good.

I will keep you all updated. In the meantime here are some new pictures - Enjoy!

Above: Kennedy just hanging out in her boppy on a cold day

Above: Brooklyn - one day Brian and I will be able to take Kennedy back east and hang out with her Aunts.

Above: Kennedy just relaxin'

Above: The first day BACK in the hospital - Acute Pediatric Unit

Above: Daddy and Kennedy after Kennedy's surgery. We have her wrapped all tight to ensure nothing would hit or bother her G-tube

Above: A rare look at Kennedy with no visable strings or cords!

Above: Kennedy loves her mobile that grandma got her.

Above: It looks like she is about to crack a smile.

Above: Kennedy and crazy Breanna