disaster hospital stay

jshet

New member
My son was scheduled for his gj tube placement at Children's Hospital. After the placement my son was moved upstairs and seemed ok. The next day, they began the feeds. My son has other special needs and seemed to be ok. That evening he began to complain of being full. I must say the nursing staff was outstanding and we are thankful they were there. A resident came down and said, he is fine, maybe he doesn't know what it is like to be full and left. After numerous complaints, my son said mommy I feel like I am going to explode. I then went out, told the nurse to shut off the feeds and get that doctor back down here. He did come and they decided that they would shut the pump off for a couple hours and start it back up once he was asleep. At 12:30 the nurse turned it back on, my son was asleep and by 1:00 he was awake and complaining again. I told them something is seriously wrong, shut it off and get the doctor back down here. They then decided he may be constipated so at 4:00 am the did an x'-ray that showed mild constipation. I told them to leave the pump off.

The next morning, I was helping my son to stand so he could go to the bathroom when his eyes began to roll back, he collapsed and had a seizure. His sugar level had skyrocketed his blood pressure was very low. He then began to vomit blood. It was like out of a movie. Since it was the weekend, all we had to work with were residents and medcial students. The actual fellow doctor was no where to be found. They were to start transfusions at 2 and never started until 8 pm. He ended up having to have blood transfusions to replace 40% of his blood It was confirmed that my son had a serious bleed.

He then developed a skin infection and became severely dehydrated. His heart rate while sleeping was 145 and when he walked to the bathroom it was 174. I am so disappointed in what is to be one of the best hospitals in the world. The first line of the hypercratic oath is first do no harm. Well I feel my son was done harm because it was the weekend and no one wanted bothered.

We thought we were doing what was best for my son, and I regret it. I wish we never did it. If I could go back he would not of had the surgery. I am so concerned that he could bleed again at some point.

This is just a short verision of what happened, I didn't even mention that after the bleeding they wanted to give my son ibuprofin for the pain. I had to say to the nurse isn't that a bad idea since the bleeding? She says oh yeah, let me call the gi doc to see what he thinks.

Just wondering if anyone else has experienced anything like this? I guess I wanted to vent and let other parents considering this surgery to know this can happen, and it did happen. If this helps one parent to recognize signs that something is wrong after surgery like this, it is worth it. Like I said this is the short version of what happened, it was much worse than this. Jshet
 

Jane

Digital opinion leader
Wow, how awful for you and your son! It was good you were there to advocate. People always ask me why I stay when my boys are inpatient- that's why!

Which Children's are you in? It does sound like the routine procedure for g-tube surgery. Do they know why happened that caused the bleeding? Once you get these things straightened out, the g-tube will be helpful. I hope things go smoothly from now on.
 

CyrilCrodius

New member
Oh my... but...
No endoscopy to see where the bleed came from?
Didn't they do an endoscopy after they inserted the tube to make sure everything was alright?
It seems obvious now that he was feeling so full because his stomach was full of blood. So surely they could have seen it if they had done an endoscopy after the insertion?
 
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