Tuesday, January 18, 2011

08.22.2008 - Biopsy Postponed

From Julian's COTA Journal.

Julian's 3-month protocol kidney biopsy, originally scheduled for today, has been postponed. He'd been coughing all day yesterday, and has been struggling with nasal congestion over the past couple of weeks, to the point where it's been waking him up at night. Things seemed to be getting worse in the past few days. The night before last was pretty miserable for Julian and Stacy, so I took an earlier flight yesterday to come join them and hopefully offer some support.

We spent some time talking about it after I arrived. It doesn't seem to be in his lungs - mainly upper resperatory junk. It's hard not to become consumed with worry over this kind of thing: the prospect of him coming down with bronchitis or pneumonia while on immune-suppressants is not a good one. After considerable discussion about what to do, we decided to go to CPK for some cheese pizza - one of Julian's favorite meals!

As we were eating, Julian kept coughing and at one point started to gag. We were on the edge of frantic when he stopped gagging and stuck out his tongue. There, on the end of his tongue, was something semi-clear and yellow and round. It turned out to be half of a husk from a popcorn kernel! Julian has been eating popcorn for a while now, but only in the past few weeks has Stacy started to give it to him without de-kernelling it for him. As near as we can tell, the husk lodged somewhere back there and has been bothering him ever since.

Now, I wish I could tell you he's all better and we had a great night's sleep last night. Not so. The coughing was worse than ever - but the nasal congestion seems to have receded. He can actually breathe through his nose. So now it's just the coughing keeping him up. We suspect that the kernel scratched his throat while it was down there, and maybe even again on its way up, and that may be what's causing the irritation. His lungs are clear, and the docs don't seem to think that a chest x-ray is necessary.

He has no other symptoms - no fever, still playful and engaging, still singing, still eating all his favorite things. Just coughing. We gave him a warm bath this morning, and that seems to have helped. He wants to go to San Francisco, so I think we'll go hang out at the ferry terminal and have lunch at Mistral. He's not acting sick (and yes, we're keeping the doctors informed about his condition), so we're going take him out for a day out on the town. We'll see how he does.

Stay tuned.



From Julian's COTA Journal.

Two weeks with no update. Sorry for the delay, but rest assured no news is good news.

Julian's favorite thing to do at present is go to the ferry terminal building in San Francisco and take the ferry to Sausalito. I've only gone along on one of these excursions, but it's good fun watching the anticipation on his little face. By the time we pull away from the dock, he's shaking with excitement.

Once we've returned to the city, we've found a great little eatery in the terminal building called Rotisserie Mistral, a French Provincial cafe. Wonderful food! Once we've got our eats, we sit on the patio and watch the container ships squeeze under the Oakland Bay Bridge. Very relaxing.

Julian's other favorite pastime is to locate and watch the “bus-trains.” Bus-trains, not to be confused with busses or trains (or cable cars or trolly cars for that matter) are what most would consider a street-car or tram. The San Francisco municipal railway and the BART fall into this category, and there are few things he likes more than standing on a platform and watching the bus-trains come and go (yes, even more than riding them).

We had breakfast this past Saturday with some dear friends, and they took us to the Squat-n-Gobble cafe at the West Portal in San Francisco. The West Portal is the western outlet for the muni-bus-trains, where about three different lines emerge from underground to resume true street-car service. Great fun, as there were bus-trains coming and going every other minute!

Yesterday we met with some other friends at the terminal building, but it was so busy, we ended up at a taco shop down the street where we could actually get a table. Still, the bus-trains run up and down the Embarcadero, so Julian thought it was great.

Julian has his three-month biopsy and ultrasound next Friday. The results of these tests will tell us (and the doctors) how Julian is doing – and when we can prepare to leave Palo Alto. At present we're hoping to be able to leave the weekend after Labor Day. It's up to the docs though, so we'll have to wait and see.

Right now, I'm sitting on the couch in our room (about to leave the RMH to take the train back to the airport so I can fly back to Denver). Julian is supposed to be napping, but I think we may have missed the window of opportunity. As such, he's in his crib watching the Koala Brothers DVD. He likes to fast forward and rewind the action – and laugh and laugh as the characters run around at top speed. It's hilarious.

He's doing really well, and Stacy and I are hanging in there. We're ready for this chapter to be over though, if only to get back to someplace that feels like our own home. A few more weeks...

Until next time...