holmfamily1992
New member
Its been 2 weeks since he has had the tube put in. The first week went really well as soon as the pain subsided. One week from his surgery he decided to he was feeling good and went to the next door neighbors and played the Wii. Not good for someone who just had surgery on their belly. # 10 pain that night. I was so affraid that he shifted the tube or even dislogded it. We were suppose to start his feedings that night but decided not to due to the pain. Saturday I got home from work and he was doing much better so we started the feedings then. We only did 30ml and hour for 10 hours for a total of 250ml. They wanted us to start slow to see if he could tolorate it. By Sunday he had developed a lump on the the side of his tube that was showing through his skin. Not like poking through but you could tell from the outside that there was something just under the skin. I called the on call surgeon and he didnt think it was anything to worry about since there was no pain.
2 days later he was up trying to get ready for school and things werent going well. He couldnt do his vest because it hurt way to much. When I pulled up his shirt and it looked like he had the start of a baseball coming through his belly and he could barely move. WIthin 2 hours we were headed back for another long trip to the ER 3 hours away. By the time we got there all the pain was gone and some of that swelling had disappeared. The ER doctor poked a little and sent us on our way. He never called our surgeon or even took x-rays.
The very next day I made an appointment with his primary. You know whats funny, a simple primary doctor took more care of this child. Anyway, he ran some blood work and his white blood cells were up. Infection was definately present. He had this butter marshmellowy crap seeping out the side of the tube and when we looked inside it, it was there too. Off to our local ER this time. Screw the specialist. They did a CAT-Scan and found an pocket of infection. The ER doctor thinks that when he played the Wii, the tube did shift and created a gap in the stomach wall. Thus letting more stomach content and bacteria to form.
So for the last week this poor boy has felt like crap and it so tired of Doctors. They now have him on Keflex 3 times a day and we have our post-op appointment with the surgeon on Tuesday. I have a copy of the CT-Scan for him to look at.
I knew something was wrong and we were not leaving the ER this time until they did something. My child should not have been running a fever and having loads of pain 2 weeks after this surgery.
Dylan just so much wants to be normal. He wants to get back to playing football with his friends and be a normal kid. He is so tired of hurting all the time.
HEY!! I just thought of a question for those of you with a child that has a feeding tube.
How many ML does your child receive?
Dylan is getting 75ml and hour for 10 hours. Total ML 750 which equals 3 cans of Nutren 2.0
He uses a Kangaroo Joey pump and It is dispencing it way to fast. He is suppose to feed for 10 hours and it finishes sometimes 3 hours early. This is way to fast. I just talked to the company and they suggested to decrease the ml an hour. They think its the bag itself.
Sorry so long, it just has been a hell of a week for all of us.
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
2 days later he was up trying to get ready for school and things werent going well. He couldnt do his vest because it hurt way to much. When I pulled up his shirt and it looked like he had the start of a baseball coming through his belly and he could barely move. WIthin 2 hours we were headed back for another long trip to the ER 3 hours away. By the time we got there all the pain was gone and some of that swelling had disappeared. The ER doctor poked a little and sent us on our way. He never called our surgeon or even took x-rays.
The very next day I made an appointment with his primary. You know whats funny, a simple primary doctor took more care of this child. Anyway, he ran some blood work and his white blood cells were up. Infection was definately present. He had this butter marshmellowy crap seeping out the side of the tube and when we looked inside it, it was there too. Off to our local ER this time. Screw the specialist. They did a CAT-Scan and found an pocket of infection. The ER doctor thinks that when he played the Wii, the tube did shift and created a gap in the stomach wall. Thus letting more stomach content and bacteria to form.
So for the last week this poor boy has felt like crap and it so tired of Doctors. They now have him on Keflex 3 times a day and we have our post-op appointment with the surgeon on Tuesday. I have a copy of the CT-Scan for him to look at.
I knew something was wrong and we were not leaving the ER this time until they did something. My child should not have been running a fever and having loads of pain 2 weeks after this surgery.
Dylan just so much wants to be normal. He wants to get back to playing football with his friends and be a normal kid. He is so tired of hurting all the time.
HEY!! I just thought of a question for those of you with a child that has a feeding tube.
How many ML does your child receive?
Dylan is getting 75ml and hour for 10 hours. Total ML 750 which equals 3 cans of Nutren 2.0
He uses a Kangaroo Joey pump and It is dispencing it way to fast. He is suppose to feed for 10 hours and it finishes sometimes 3 hours early. This is way to fast. I just talked to the company and they suggested to decrease the ml an hour. They think its the bag itself.
Sorry so long, it just has been a hell of a week for all of us.
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">