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
 

Printer

Active member
CHOP is one of the best CF Centers in the country. Your story goes to reinforce the fact that all Doctors are not created equal. As a Resident, he is most likely training to be a pead and like most peads he knows little about CF. Your CF Doctor (CF Team) was only a phone call away, he should have made that call.

Bill
 
I had a disaster stay. I wrote a book about my life with CF and how God has helped me in my life. Here is a little part from my Book.

In 2011, I had a pretty difficult battle for my health. I was hospitalized four times due to complications with Cystic Fibrosis which is a progressive lung disease. The first stay was the most challenging time I have ever experienced in my lifetime. My kidney functions began quickly shutting down due to an extreme reaction to a medication. I was frightened!
I dealt with nausea during the entire two-week hospital stay. All I wanted to do was sit still so that I wouldn’t feel sick to my stomach when I moved. Still, I could only focus on the intense nausea. I was put on a special kidney diet to help. Due to the nausea and a limited bland diet, I barely ate and lost weight. I slept so much because my body was battling numerous health issues. I had dangerous kidney functions, high blood sugars and I was fighting off an infection in my lungs. My kidney functions were almost to the point of requiring dialysis. I was grateful for my parents coming up to visit so they can help talk to the doctors and nurses and tell them to come back to the room if I was napping. This hospital stay in May was extremely frustrating because I dealt with numerous doctors and interns who didn’t communicate with each other. I received conflicting information daily. Apparently, there was little to be done for my kidneys. Since no medications could help, the doctors had to wait and see how my kidneys would heal. I was scared! I was getting new medical information on a daily basis and the information conflicted with each other. I stood up for myself my asking questions, making notes and requesting clarification. My parents helped me by being there and talking to the doctors as well. I hardly ever see my dad get angry and I can count the times when I have seen him loose his temper. About the fifth day of conflicting and ever-changing news about my situation, my dad lost his temper. He confronted the doctors that he did not have ANY confidence in the hospital and the staff because they weren’t talking to each other and no news was consistent. He told the doctor that that they need to be on a team and talk to each other. From then on, the head of the kidney specialist team talked directly to my family and me. During this terrible battle, I felt hopeless and confused. I could not make sense of what was happening. I was discouraged. When I was reading my Bible, some verses spoke to me and I immediately decided to live out those verses.
I eventually got to the end of the hospital stay because my kidney levels were going down. I was released the Friday before Mother’s Day. Needless to say, my mother was happy to see that I got out so we could celebrate Mother’s Day. My family went to one of her favorite fancy restaurants. I was glad to be out of the hospital but I could barely eat anything because my appetite shrunk because I felt too nauseated to eat during my hospital stay. It took me a whole month to get back my appetite. I was finally able to eat a good meal by Father’s Day.After I got home from the hospital, it took me a while to adjust to being in my own bed. When I got up from a nap or at night, I was very confused on where I was because I was so used to being aware at the hospital that I didn’t get a good night’s sleep. At the hospital, I felt my body was in a fighting mode because I had to be aware at all times so I could see what the nurses were doing. One time, there was a nurse that was about to give me a medication. She was going to give me the medication that made my kidneys start to shut down. Fortunately, I was awake enough in the early morning to ask what medication she was about to start in the IV because I knew I wasn’t suppose to have one at that time. I told her that she could not administer the medication because the doctors switched my medication to prevent further damage to my kidneys. I shudder to think what could have happened if I wasn’t paying attention and got that IV medication. In the mornings, there was always someone coming in to take blood from me so that they could test to see where my kidney level was so that they can start my IV medication. When I got up, it always took me five minutes to realize I was at home. This lasted for about four or five days.One thing I was frustrated about during the hospital stay was that the doctors told me that all they can do was wait and see what the kidneys were going to do. Every day the doctors wondered if the kidney functions were going to keep going high or plateau or go back down to normal levels. I never got a good answer on why they couldn’t stop the levels from going too high. The only thing that they could do for me was to give me a shot for being nauseated. I thought they should have some medication to prevent the kidneys from going to dangerous levels because we have medication or shots for nearly everything. After this stay, I had to do a weekly blood test to check kidney levels functions for six weeks. Every test result was at a healthy level!! I was amazed how quickly my kidneys healed. The only thing that seemed to help was rest, prayer and encouraging words from my family and friends. I never been to this hospital again.
 
Terrible story Jshet

MY GOODNESS!!! As I was reading your story, i wanted to know what actually caused the bleeding? Was it the surgery? Was his stomach filling up with blood because they made a mistake?

And by the way, excellent advocacy, Jshet, " I told them to leave the pump off.".

And, yes, I have multiple horrific hospital stories too. I believe all of us do. My son (who is now 22) was about 12 when I insisted that he see the doctor because he was so pale. We had purchased a trampoline and he said every time he went on it he felt his heart beating so hard that he got alarmed, and I didn't think too much about that, just figured he was out of shape. But when i kept noticing he was tired and pale, we insisted on an appt. He actually vomited up over a liter of blood in the doctor's office that day. Although I love that doctor, that day he said "I think its chocolate, isn't it?" It was NOT. Off to the hospital. In his case nobody knew he had portal hypertension which squeezes the portal vein on top of your liver, causing a "back up" of sorts in the esophagus and it you get varicose veins in your throat. One of them burst that day, and that's when we found out he had liver disease related to his CF, and that he had been internally bleeding for a long time. Anyway, the hospital stay was abominable including several doctors saying terrible, terrifying and apocalyptic things to my precious son (none of which came true).

Oh, the stories. Over and over and over. Bottom line: you are the PCP. Don't be afraid to take charge. You no doubt saved your son's life.
isabella
 
If I've learned nothing, it's how to stand up and keep asking questions and say NO and "SHUT IT OFF NOW" and keep saying it over and over until it's heard. Good for you. I'm so sorry we've each had to learn this the hard way. Maybe sharing your story will help a parent be strong enough to question the doctors and go with their gut instinct when things are not right.

So glad he lived through it (and you did too, the stress is unbelievable watching your child hurt and have something major go wrong). Best of luck in the future and thank you for sharing.
 

jshet

New member
Hi Isabella, They feel that the surgery caused the bleeding. What was happening was that his stomach was filling with blood and once they began the tube feeds it was adding with the blood causing him the feeling that he was full and then feeling like he was going to explode, which is kinda what he did. Then they said that because the blood was dark, he was no longer bleeding. But unfortunately they were wrong again and when they began to give the transfusion, he began to throw up blood again because he was bleeding throughout the day. By the time they wanted to scope him to see where the bleeding was coming from he was not stable enough to stand the anesthesia. Because of their mistake they replaced 40% of his blood volume. It was a nightmare, I wish now we did not even do the procedure.
He then ended up with an infection, and we have an appointment tomorrow because it seems the infection is getting worse.
 

Ashland

New member
I mentioned this in my thread on pancreatis but once again, we brought my daughter to the ER because she was having abdominal pain. The nurse thought it would be okay to release her after having a pain med and some iv fluids. In order to speed things up because it was 1 am, she put a pressure device on the iv bag to make it work faster. The doctor and nurse left the room and when the iv bag ran out the bag was full of air and began to go up my daughters neck and we could hear the air bubbles going in. Her face and chest became very red and I went out in the hall and yelled for a doctor. When they got there they didn't know what to do other than disconnect the iv. Her vital signs were fairly normal except her heart rate skyrocketed. Once that settled down they admitted her overnight for observation. This air embolism could have caused a heart attack, stroke, brain damage or even death. We were very lucky that we were able to take her home the next day without any complications.
 
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