Don't Mess With a Mama Bear...

watching Pooh in Gastric Emptying Study

Friday morning we did Jillian's gastric emptying study. I was a little nervous about her needing to lay still for 90min. Brent had a comp day from work (he put in over 120hr during the last pay period) so he was able to go with. She laid still so nicely. She fussed when they first put milk in her tummy though the g port but after a few minutes she stopped fussing when they wrapped her up tight and put on Pooh Sing-Along-Songs (maybe Jillian needs that for her birthday...). She just watched it and played with toys. She fell asleep and slept for about the last third of the test. We woke her up when the test was over. They told us that her doctor would have the results within 24hr and that it might take a week for them to call us about the results. We then left the hospital and headed over to Mayfair Mall to have them look at my iPhone.
Once we got to the car in the parking structure (9 spot) we decided we would hook her back up. The pump kept erroring but eventually we got it to go for a little bit. Once we got to the mall they told us it would be an hour wait for them to look at my phone. During that time I lost track of the NO FLOW OUT errors that occurred. After lunch we went out to the car to try to flush the line to see if that was the problem. No movement at all... grand! We went back into the mall quick and they replaced my phone because the broken part could not be fixed.
We then headed back by the hospital. On the way I called IR and was able to talk to the radiologist that we have worked with before and have a good relationship with. He said to stop in and they would see if they could unclog it.

Sleeping during gastric emptying study

We got in and a nurse (she helped with the morning test) took us into a prep room and tried with no luck to unclog the tube. She then left the room and came back in with our favorite guy and the head of IR (he did not introduce himself). They tried and said that it was clogged and would need to be replaced. We asked that since were there if we could just change it to the button instead of coming back next week. At first the answer was no. Then a nurse came in and said maybe. Then she came back in and said that Jillian did not weigh enough to have a button... WAIT... WHAT?!?! She said she needed to be 10kg and she was not. I asked for her to be weighed and she was around 9.1kg! They then took Jillian back to just change up the white tube in the middle of her tube. After they brought Jillian back to us our favorite radiologist came in. He explained that the 10kg was a new hospital policy that was going into place but it was not a hard fast rule. We talked about how GI and Surgery had referred her to get it changed and they both knew her weight and knew her story. He said that if they were both good with it then ok, he needed to do something quick and then he would be back. At this point we were under the assumption that she would be getting a button the following Friday like planned.

I got my tube!

Then the head of IR walked in... Change tone of everything. He then told us that he had been at the hospital as the head of IR for 7mo and based on his experience they are implementing a new policy that to have a button you have to be 10kg. I asked why. He said there is less problems. I asked for more details. This is where it got interesting. He said moms don't blog about bad things, people dont talk about when children die from tube placements going bad and that Kimberly-Clark has a lot of money to invest in people liking their product and that they buy out people's opinions! He said that he did not know why I wanted a button and that it is like a nice shiny sports car but you cant keep it's engine running because it has to be changed every 3 months (something we knew... something that is true of feeding tubes). That if he had a child that needed a tube they would only have a PEG tube. That he could not see how something that is sticking far out of her would be interfering with her daily life (it most definitely does...). He insinuated that buttons are dangerous and could cause death. He kept saying that they could flip up into the stomach (something that could happen with any lengthy tube be it PEG or button). He said that even though GI and surgery are involved with tubes IR is the one that has to deal with them. He insinuated that we wanted to switch to a button for us and it is not in the best interest of Jillian. He acted like we were trying to hurt Jillian. I was so offended and ticked off. He said that he prefers a child be 16mo old before getting a button but he would compromise with us at 12mo.
I asked him why no one had told us before about this 10kg rule and he said that no one knew about it but the rule was being put in  place by a joint decision between the three groups... huh? No one knows about this but we decided it together.
 He did ask our favorite radiologist what he thought and he said that he agreed (he maybe said 20 words to express his agreement). I wonder what he would have said had his boss not been there. This guy was just going to go ahead with doing it so I find it hard to believe that is entire opinion changed.
If the head of IR had not insulted us, groups of people we belong to and been difficult maybe we would have just left saying fine, if its a policy then its a policy, but instead we are mad. But this is also the second policy change that Jillian is stuck in the middle of that could change the outcome of Jillian's care. I am annoyed with policy changes that change things without anyone knowing about the new policy before the procedure and then it changing things. There is obviously a problem with communication. 
Since we got home that day I have been researching problems with GJ buttons... and after reading every article on the first 3 pages of a google search on the topic I have yet to find a difference in problems with the PEG and button. I talked with people from Feeding Tube Awareness and they said that they don't know of several of the things that he mentioned or that they are opposite. I have found a study of GJ tubes that did not differentiate between the two types of tube and said their is a 0.4% chance of death with a GJ tube placement. That are low odds and considering that these tubes are placed in medically fragile people 0.4% death rate is better then I would have thought.

Daddy looking at her 4th tooth coming in while we waited

So now what to do about it. We are looking into that. We think a button would make Jillian's life easier (and yes in turn ours) but if you think we do any of this for our convenience you are sadly mistaken. We are the ones that get up at 2am EVERY night. We give up sleep, money, time, relationships, and energy for the best for Jilli. You try buckling her into a carseat with a PEG, you try helping her become mobile with a PEG, you try finding close that work best with a PEG. We do this all out of the love of our daughter. So next time you want to mess with this mama bear, dont forget I have claws.