Monday, October 27, 2008

What Little We Know & Where We Are At

Quick update to expand on last nights late development. We took Elias to the emergency room about 2 PM Sunday because he was having obvious pain in his stomach when his feeds would push. Of course Ped Surgery was consulted upon our visit, and as usual the residents were of their typical help like we experienced in the NICU. The tube had fallen on again on Saturday afternoon, but I was able to get it back in. A contrast study via x-ray was done to confirm proper placement. It was in the correct place, so of course they were ready to send him home. At our request we hooked up his feeds and he repeated the pain. Then of all things it was decided to add another cc to the balloon. I was infuriated about this asking what that had to do with causing pain in his stomach. There was already 2 cc in there, which is the most we have ever been able to place in the balloon without it leaking all the time. It seems like every freaking G-tube problem we have had the solution involves increasing or decreasing the balloon size....that must be some magic balloon! Of course there was leakage all around the tube, more than before they inflated it, and he was not even getting any feeds through it. They finally started an IV (the NICU nurses had to come down and do it, so we got to see a few friends) around 8 PM....6 hours after we got there and made the decision to admit him. We did not go up to our room until almost midnight, they apparently built a wing from scratch to put Elias in! So it took 10 hours for them to come to a conclusion and get us into a room! I was even more irritated when I heard the ER attending talking to someone on the pediatric floor, apparently someone forgot to make a phone call, because of the idiotic communication scheme that exist where if you are a peon resident, you can't talk to an attending even if I request it. Who made these doctors GOD. If I the consumer ask to speak to the head person it should not take five hours, another messenger and a carrier pigeon to talk to someone, especially about getting admitted! Ridiculous, so any doctors out there reading this blog, your hierarchy of entitlement stinks and patients suffer needlessly. The Ped surgery resident could not even tell us who the attending on call was this weekend. Explaining how he is not allowed to talk directly to the attending...what type of crap is that! I'm all about chain of command, but please, give me a break here, is all this necessary. So the long and short of this is we know they are going to evaluate Elias today, but how long he will be hospitalized, we don't know.

I think the most frustrating thing about this whole thing is while they were rushing us out the door in the NICU, we were asking them to address the G-tube issue. Telling them we would rather spend another week or two here than to go home and have to come back....well guess what AGAIN we were right. not even 2 weeks out of the NICU and we are back in the hospital!! We have to have a very long and serious discussion today with the surgeon about this G-tube and the potential for redoing it. Yes risk exists, but falling out 4 times in 10 days is ridiculous for one, second we do not have time for 8- 10 hour ER visits every four days (which we are averaging now), and even more important, any time we have to take Elias in the ER for the G-tube they are required to do the dye study X-ray for placement. With the Fanconi Anemia they specifically tell you to limit or avoid x-rays at all cost...they are deadly to Elias!! So we need to weight the risk of elective surgery to replace the G-tube vs. needles X-ray risk Elias faces every time something doesn't go right. Today I'm sure will be a very frustrating and spirited day as we advocate for Elias. Some tough decision will need to be made for sure. We will update you later with what we know.


  1. As you folks are brainstorming ideas to solve this latest gtube crisis- keep in mind that kids with IA often have motility issues in their gi tract that impact their ability to tolerate feeds. After a year and a half we still do not have a concrete answer to what exactly those issues despite numerous trips to the ER and several different gi's. We do know that when the tube gets sucked in past the marker he is hyper mobile (his tummy is just a-churnin' and when it gets pushed out of the tummy he's hypo mobile (nothing is moving around). If you want some advice on the various "tricks" we've come up with to combat these two extremes in order to avoid (some) admissions- email me and I'll share. I'd post them on here but very few of them were suggested by docs- they are more from the BTDT parents we have met and from our home health nurse who could place a gtube in her sleep! Lori

  2. Oh my god, I'm so sorry. The frustration is heartbreaking. (((Hugs)))


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