Logan is fighting and we need happy thoughts.

I am blogging from home now because I caught Aidan's cold. I went down to see Logan for a few hours but I didn't want to get him sick. He got a low-grade fever last night and I worried it's me passing on my germs to him. So I figured he's in good hands and I should rest as well, since it's going to be a long fight.

So yesterday afternoon, the Chief of Pediatrics came to talk to me. I wonder why she's the one talking to me, probably because I've expressed that I wanted Logan to get transferred. She said she would be around next week as the Director of Pedi is up in Sacramento due to a staff shortage. Anyway, she said she has talked to the Geneticist and he said it's unlikely that Logan has Mitochondrial Disease, but he's not ruling that out completely. He's the one that has seen Logan when he was in the ICN in San Francisco when Genetics was consulted, and he remembered Logan. He gave the PICU a list of other tests that should also be run, in addition to the Mitochondrial Disease one. It might be something else, it might not. For now, we won't know until we get all those tests done, and even if we get those tests done, we might not know. The Chief reassured me that the Genetics community is small and the Santa Clara Geneticist has also consulted with the one in the San Jose/San Theresa Kaiser. I guess she wanted me to know they are doing everything they can, so that I won't transfer Logan to Lucile Packard. She said the experts at the lab are really good in making sure all the tests are done and might add on tests that should be done but not checked off. So we'll see.

Logan has been doing well with his breathing. When I got to the hospital this morning, his respiration rate set for the ventilator was down to 4. They actually stopped the ventilator for an hour, decreased the sedation medication to assess how Logan breathes on his own. He did fine and the blood gas confirmed that he was doing good. However, when the nurse was drawing blood out, he got mad and stopped breathing for a while. The backup ventilator kicked right back in to support him. Aiya aiya... he just can't keep on doing that! He has really shallow breaths and I can see that from the monitor of the ventilator. They are going to wean him off the ventilator two more times today for an hour, to see how he's doing. They are repeating the urnine test. Also the culture from the mucous a few days ago came back negative. They will stop his IV antibiotics now. The doctor said he might not even had a UTI, but the urine sample might just be left out and bacteria grew. However, because the x-ray showed that he has a dilated kidney, and he can't do the VCUG because he's ventilated, the Urologist recommended giving him small doses of antibiotics orally (through his ng tube) for a few days in case there is a problem.

The audiologist completed part of the hearing test yesterday and will finish up this afternoon. Then we will see if he has any hearing problem. Because the midbrain controls vision and hearing, and movements, I am worried he will be blind and deaf/mute plus unable to walk. I have requested to have the Opthamalogist do a vision test on Logan once he's not sedated anymore.

For now, we're trying not to think about the negative. It will be weeks before we know the results of the blood tests and I don't want to go crazy. We'll just keep cheering Logan on to breathe so that he can be off the ventilator, and I can hold him and feed him again. I know life will not be the same when he gets discharged this time. His childhood and adulthood will be difficult, but we'll be there to support him. I hope Aidan will grow up to be a really great and strong big brother to Logan. For now, Happy thoughts!

Also, I would like to thank Peggy and Alex and all the friends at Yahoo for the Dinner Drive that Hank told me about. Thank you for helping us with dinner. It's been difficult cooking dinner since we are getting home late and are so exhausted. By the time we cook, it's already bedtime for Aidan. I would also like to thank everyone's well wishes and prayers. We're blessed to have loving and caring friends.