The Good, the Bad, and the Ugly of Tube Feeding: The Ugly

The Ugly

I have been dreading this post.  I didn't want to revisit the drama that took place in December and think about the risks of our upcoming procedure.  Well, today it was all thrown back in my face and I have been forced to deal with it.  So it's time.  It's time I tell the ~short~ version of the crazy fiasco we've been dealing with.  And yes, this is the short version. 

On October 26th Jayson had his GJ feeding tube placed.  We wondered why many nurses mentioned they had never seen a tube like that.  They were unsure how to use the tube, flush it, etc.  That was a warning sign.

Jayson had a couple of hospital admits over the next couple of weeks.  Many more nurses and doctors said they had never seen a tube like that before.  The wound nurses, who specialize in tube wounds, mentioned his tube was highly abnormal.

On November 23rd Jayson's tube caught on his carseat and pulled out of the peg at about 11:00 PM.  I called the hospital to give them a heads up we were coming.  The on-call GI doc told me to turn around and go home.  There would be nobody available in radiology to help us until morning.  And then, they have a busy morning so they wouldn't be able to replace it until the afternoon.  I reminded him that my child is SOLELY tube fed and he would be without food for many hours and would get dehydrated.  He said most children can go 10 hours without getting dehydrated, and they can rehydrate him once he gets to the hospital.  It would be best if we turned around and went home and just called in the morning to see when we should come in.  Obviously, we disregarded his advice and came in.  Jayson was already beginning to get dehydrated so an iv was placed.  We were taken to the RTU.  We saw a GI doc in the morning who laughed when he saw our tube.  He told us it was nearly impossible to replace this tube.  There was only a 10% chance they could get it back in, and he would have to undergo anesthesia.  There would be a risk of perforation and discomfort.  He recommended we have an NJ placed down his nose again over the next 4 weeks until his stoma is 8 weeks old and we can switch out the tube.  He said that even if they were to get the tube back in, that it would likely not last another 4 weeks anyway.  An NJ was probably our safest bet.  I was furious to say the least.  We went to radiology where a radiologist tried to place the tube for 40 minutes.  Imagine pure horrid torture for your little 11 month old baby for 40 minutes.  The tube wouldn't go down.  My favorite moment was when the radiologist asked me if we could remove his cannula while he placed the NJ tube because it would make it easier.  Actually no.  He kinda needs it to breath.  But thanks for asking.  The tech got so aggressive with holding Jayson down that she partially pulled out his iv.  It was bleeding everywhere.  He was literally swimming and soaking in his own blood.  I'm scrambling to find paper towels, a towel, something and he keeps working and Jayson keeps screaming.  He told the tech to page our nurse.  Our nurse was in a completely different department of the hospital!  Jayson was bleeding all over!  He's screaming!  And the radiologist continues shoving a tube down his nose and throat.  I seriously wanted to cause him bodily harm.  So I took the tape off Jayson's arm.  I pulled the iv the rest of the way out.  I put pressure on it to get it to stop bleeding.  I found tape to tape it up.  Yeah, it's almost like I work there.  After 40 minutes, the radiologist said he couldn't get it in.  We went back to our room and waited for the next radiologist to get to work and we would give it another try.  She tried for 20 minutes.  No success.  It seemed to hit something every time, and it would coil.  It simply would not go down.  Jayse was tortured for nothing.  The GI doc returned and told us that we would put Jayson under anesthesia the next morning and they would try to place the GJ surgically.  Again, there was only a 10% success rate.  If it didn't work, they would be forced to replace the entire tube which isn't recommended until 8 weeks after surgery.  There would be high risks involved.  We were a nervous wreck, but we experienced a miracle!  They got the tube placed and it stayed in place.  We got to go home Sunday afternoon after nearly 3 days of being in the hospital for a tube replacement.  The doc told us to baby our tube.  He'd be surprised if it made it another 4 weeks.

December 5 I met with our GI doc who placed the tube.  She admitted that this is a tube she doesn't typically place in babies.  She said she chose it because they ran out of the tube they typically use.  She didn't feel it was necessary to tell me because "I was so insistent that it get done quickly".  I explained I was trying to avoid RSV season, but if she didn't have the appropriate medical supplies we definitely would have waited.  She said it didn't matter because we would replace it soon anyway.  I should go to the radiology department to set the appointment for the end of December and see what special supplies we might need.  She hasn't worked with a size 20 french Corpak tube before, and she feared we may need special supplies to switch it out.

 When I went to radiology, I got some shocking information:

• Placing any GJ tube in a baby under 2 is a high risk procedure and should be avoided whenever possible.
• Jayson's particular tube is measured at size 20 french.  That is a tube that is typically used in a large adult.  It should never, in any circumstances, be used in a child, let alone a baby.
• There is a high risk of perforation (which results in death) with Jayson's particular tube do to the method needed to pop it off to switch it out AND the fact that it's size is so large it nearly fills his entire bowel.  It can cause ulcers that could rupture.
• There has been a couple of deaths in the past couple of months with babies with the same or similar tubes as Jayson.  One was in critical condition from a perforation that morning and he had the exact tube Jayson had.
• To lower the risks, Jayson's crummy tube somehow needed to stay in 4-5 months before switching out.  But since it was pieced together, taped, and flimsy, no one expected it to last that long.

After some drama and meeting with the doctor then risk management, I was left without a plan or a solution. I was told the radiology and GI departments would be having a meeting and I would hear about what they discuss.  I never heard.  When I originally confronted the doctor she told me it was my fault since I opted to have the GJ tube to save his lungs (instead of the G tube), and because I insisted it was done quickly.  Mike and I decided the only thing we could do was completely baby this tube and make it last the 4-5 months radiology suggested.

Well, we did it.  It's been 4 months.  We are planning to switch it out in the next 2-3 weeks.  I had an appointment with our GI doc two weeks ago and it went surprisingly well.  We had a plan and she explained how she was going out of her way to make it right.  I was going to give her another chance.  I considered switching doctors, but it takes 3-6 months to get an appointment and I knew we couldn't wait that long.  I had to make this work.  Our doctor called me last week to tell me she spoke with a couple of the radiologists and each of them suggested a different tube.  One suggested a 16 french while the other suggested a 18 french.  We could choose from the AMT brand or the Kimberly Clark.  We needed to look up the pros and cons of each and let her know.  I could tell she knew very little about the tubes, so it was totally up to Mike and me.  We fasted and prayed hard for the past week.  We've asked those we know and trust for counsel and advice.  We had pretty much decided the 18 french was the best option.  We also discovered that AMT does not make a 16 or 18 french.  How interesting that our doctor suggested it when it doesn't exist.

As I went to Primary's today for our neurosurgery appointment, I had to get an xray for the appointment.  While I was in radiology, I decided to ask to see what the tubes look like that Jayse would potentially be getting.  This simple request turned into something I didn't anticipate.  I heard from a couple of people in radiology who once again informed me of the risks of this procedure.  They also informed me that as a result of my formal complaint, there was a big meeting between GI docs, radiology and surgeons so they could all get on the same page.  They established certain protocols and procedures for going about things in the safest way.  I was informed of my doctor's plan for Jayson's procedure.  She and one of the radiologists were privately meeting and discussing their plan.  It was NOT following the newest protocols.  It was breaking some of the new rules, and it was not safe.  I was also told that the 18 french was already ordered for my son, although I had not yet requested it.  The radiologists told me that the 16 french was definitely the safest decision for my son and we needed to quickly switch to a 14 french as soon as possible.  The 16-20 fr tubes were dangerous and greatly increased the risk of bowel perforation and ulceration.  Why was this not discussed with me by my DOCTOR???  Why wasn't the safest recommendation made to me in the first place instead of asking me to choose between two tubes?  Why wasn't protocol followed in planning his procedure?  Why aren't the safest of precautions taken when planning my son's procedure?  I just don't understand!!!

I left furious.  I was seriously crying and shaking.  Although I was not told anything specifically negative about my doctor by the radiology department, I decided right then and there I was done.  I need a new doctor, but I can't wait 3-6 months!  I need one in the next couple of weeks who can switch out this tube!  And I need a radiologist I can trust!  And I want this procedure done in the OR.  And I want a scope to check his stomach and bowels to see if there is any damage due to the current tube placed.  And I want the doctor and radiologist to follow the new protocol established.  And I won't negotiate or back down.

I spoke with risk management again hoping she could help me with these requests, and that did not go well.  I was told that there is really nothing they can do to help me.  They won't help me get a new doctor.  That was not an option for me.  I later got a call from risk management apologizing and we are now working on a plan.  One of our beloved doctors is going to get involved and I'm hoping she can help us find a solution.  If not, I suppose we will be flying across the country to go to another hospital.  I will NOT risk my son's life, especially for such a small procedure.  And especially when his life is at risk due to one of OUR doctor's mistakes.  I won't.  I will fix this, and he will be okay.  I'm just beyond exhausted.  Life is hard enough.  I don't need to deal with hospital politics on top of everything.  I won't play their game.  I will make sure that my son gets the absolute best care he can receive.  He deserves nothing less.

And THAT my friends, is the UGLY of tube feeding.  And unfortunately the saga continues until this &*%$ tube is out of my boy, and a safe one is inside.  Please send your thoughts and prayers our way. xoxox