Thursday, January 14, 2010

Tomas saw his cardiologist Tuesday to follow up from all those bradycardias he was having. For the second echo in a row his ASD and VSD were closed. It is such a relief to close that chapter and move on from being a cardiac patient. He is not having the bradys anymore because I stopped all G-feed attempts. He just was not tolerating them. Between the reflux, and the gallstone it wasn't worth it . But the Dr. did say that he would ALWAYS recover from any he did have because his heart was strong. Can't really get better news than that!

As usual with Tomas something else is always going on. Tuesday morning he had one of his "dying spells" again. I really wish I had another way to describe them but when I use that term the doctors all know what I am talking about, otherwise I have to go into a 100 word explanation of what happened. Basically, he refluxed, then aspirates, then airway shuts down. This one was very quick (about 5 seconds), but it is the first time it has happened since he has been on J-tube feeds. It also means that clearly the nissen isn't holding otherwise he wouldn't be refluxing at all. Later on that day, I couldn't get his pump to feed into him. It would run just fine when it wasn't connected to him, but as soon as I hooked him up to it the "clog in line" alarm would go off. I called his GI doctor who never calls back before the end of the day.  The GI doctor can't fix the tube anyway because it has to be placed in the radiology dept. So I had to debate with myself as to wether to take him to ER or not. It is surely not a life or death thing but I still didn't have a way to feed him. So I weigh the ER germs against dehydration and let a few hours pass. I decide to give it one more try before we head out (Mike is in NJ so it is just me and the kids), and it worked!!! Yeah, no hours spent in ER!

When the doctor called later on he said it was probably a kink in the tube, but wether the kink caused the wretching and gagging or the wretching and gagging caused the kink, was a chicken and egg kind of thing. It worked fine all night and for most of yesterday. There was a 2 hour period where it was stopped up again. I am thinking this means that tube is on its way out. I am just praying we can make it through our 2 week trip to FL with no incidents (don't you all laugh at me - it COULD happen).

Seriously, I don't know why I though I could do this trip. Tomas has NEVER gone 2 weeks without soemthing going on. I think 8 days without a need for a doctor is his record. Mike is driving us from TX to FL, but then I am dropping him off for his work conference (poor guy) and the kids and I are traversing the state. Moments of panic are creeping in. But I am going to be positive. 3 of the 4 towns we are visiting have great children's hospitals nearby. The 4th one is about 2 hours from the nearest children's hospital, but that is still drivable for an urgent mater (not a true emergency, then we'd just go to wherever and they can transfer after he is stable). I got a travel concentrator from home health, an adaptor so I can charge medical equipment in the car, enough supplies for 2 weeks, the dogs are boarding, the mail is stopped....See I have it all planned out. I have planned for EVERY contingency, crossed ALL my T's, dotted ALL my I's. Hah! This is usually when God's sense of humor goes into overdrive.

So Saturday Tomas turns one and Saturday we head out. He loves it when the girls and I sing to him and grunts for more until we are all hoarse. So we'll serenade him with "Happy Birthday" as often as he wants while we drive east. I've already gone through all my emotional stuff for his birthday and we are all ready to get to some warm weather and visit family and friends. We can't wait!


  1. i will be saying some prayers for a safe and no complications visit. i think regardless it will be so great for all of you to get a change of scenery even if there are mishaps. i can't believe tomas is going to be one.

  2. I'm praying all goes well. You are very brave but I'm sure all that you have been though has prepared you for anything. Good luck and enjoy your trip!!!


  3. We live just outside Orlando and go to Arnold Palmer Hospital for Children. They have dealt with my son for years. He has cardiac and Gi issues, along with a G (previously J) tube. To be honest, it's a teaching hospital so some of the ER staff can be a bit clueless on occasion, but the actual Doc's are top notch. They have saved his life more than a few times.