Hospital Bounty

When I got sick as a little girl, my dad always came home from work with a present for me. The gift was something to entertain me while I was in bed - an activity book, a comic book, or once when I got car sick but waited to throw up until I was out of his car, he bought me a set of Trixie Belden mysteries. If getting car sick is worth a Trixie Belden mystery book, what is heart surgery worth? Well, take a look at the pictures on the left to see a portion of Bubsy's hospital booty. The pony is waiting in the parking lot for his discharge.

We've settled into a quieter routine. His saturations are mostly in the 70s and occasionally creep up into the 80s, where they ideally should be. And, they sometimes go down into the 60s and 50s where they should never be.

He's also been spiking high fevers once or twice a day. His blood has been cultured many times, his urine and poo and snot have all been tested and they still don't know what's causing the fevers.

He's having another bronchoscopy on Monday to see if he has some sort of infection from his multiple intubations. The other theory is that he is continuing to reflux, even though he's using a feeding tube that bypasses his stomach and sends formula directly to his small intestine. The reflux may be going into his lungs and preventing them from healing from the surgery and multiple intubations.

If this is the case we may get a g-tube. The feeding tubes that pass through his nose force the sphincter at the top of his stomach to stay open all of the time. A gtube which goes directly to his belly will allow the sphincter to close, and thus stop some or all of the reflux. There are also some more drastic versions - there is a g-j tube that is inserted into his small intestine. I'm not very excited about that because that would force us to keep Bobby on round the clock feeds for the long term (the intestines can't handle large portions of food at once so instead of eating meals, you have to do continuous feeds). Another option is something called a nissen fundoplication - this actually tightens the area at the top of the stomach, helping to slow the reflux.

We're open to the g-tube. Our main problem is that Bobby's GI doctor is at another hospital. The GI department at Children's has repeatedly proven themselves to be inefficient, incompetent, etc so we don't want to consult with them. But, Bobby can't leave Children's to get a consult somewhere else. It's awkward and frustrating that Children's allows this department to operate at a lower quality level than the rest of the hospital. We've worked with cardiology (obviously), ent, and opthamalogy and have been universally satisfied. So, we'll have to figure out a way to get ourselves satisfactorily informed before we make a feeding tube decision.

The good doctors in the ENT department that are doing the bronch on Monday are very efficient. They are combining the procedure with an audiology test. Bobby passed his newborn hearing test but hasn't been able to pass another test yet. The cause might be fluid build up that his ear tubes will take care of, but he might also have a hearing problem. That's common for kids with Ds. We know he hears some, we just need to find out if he needs a hearing aid. That will happen Monday.

In the meantime, we're having a quiet weekend. Bobby is napping now and Valerie and I are just hanging out. We left for lunch earlier and got caught up in a mass of St. Patrick's Day drunkards. That seems so surreal - this hospital life is all consuming. Fortunately, we were able to hop on Bobby's pony and escape the craziness.