Today has been interesting!

Where to start...

Jonah is still in the hospital and will be till some time next week, but the Dr's have assured me that he will not be in here for Thanksgiving. Feww, because my family will be having Thanksgiving with us in Utah! Jonah is up to his old tricks. Today he pulled out his G button (feeding tube) and just looked at me like "wow mom, did you see that?" He didn't even cry, he is strange. I think he likes to keep us all on our toes. So funny!

Jonah has a strange diagnosis, one that I have not posted about and have shared with only a few. I would continue to keep it to myself only, I have tried to do research on it and have found it impossible to find other kiddos with this same diagnosis. I will be the first, in hopes that other parents might come across my blog on google and respond, or perhaps get answers for their child.

Jonah has Priapism. In English this means that Jonah has prolonged erections. This has been going on for the past 6 or 7 months. We have seen two urologists and until today we haven't gotten very far. we have taken him off meds that might be causing it but nothing changed. I went to the Dr's last Monday for this but the breathing freaked everyone out and once again this was put on the back burner. When he was admitted I brought it up and said I wanted to see a urologist in house to have a few procedures done. One being a cap gas.

A cap gas is a blood with drawl that measures the oxygen exchange in the blood. So yes, Jonah had blood withdrawn from his penis. It was sad. He cried, I cried, I cried even more when I saw the bruises on his little pee pee. The test came back at regular numbers. This is good...Kind of. It tells us that he is not having any tissue damage, and will be fine later on in life ;) However this does not give us anymore information, like why this is happening and so on. His longest erection has been 14 hours.

The urologist seems overly excited about this case as he has never seen this is a young child, and he too can find zilch information on the topic. He is now working with an adult urologist from the University hospital. This is what they came up with: Jonah has a diagnosis of stuttering priapism. The options are: let it be and do nothing, which is what we have been doing but this causes many problems with his everyday routine as he can't walk or even pay attention to anything else. OR we can start him on a daily dose of Viagra. Yes, Viagra. I know this sounds strange I too questioned it as it seems Viagra is suppose to start an erection, I guess you can also use it to cure one. If we decide to do this he will need to take it daily. This may or may not work due to the lack of children suffering with no reasoning behind the priapism. I'm not sure what to do as of right now, no decision has been made on our behalf.

Not much has changed for Jonah in regards to his health. All tests have come back negative for viruses or bacteria. This leads his doctor's to believe that it is his lung disease: Non-CF Bronchiectasis. This is not good. It makes me feel sick. I have worked so hard at trying to keep his lungs "good!" He will have a CT on Friday to see what new damage is occurring.

Please keep this handsome fellow in your thoughts and prayer's.