pulmonary function - moderate to severe neuromuscular weakness

Shawn just talked to his pulmonologist. His pulmonary function tests last week showed that he had moderate to severe neuromuscular weakness. Next step will be back to neurologist to discuss this.

The pulmonologist also thought that he should do a sleep study, to see if he might benefit from using oxygen while he sleeps.

does anybody really know what time it is?

Dave and I are in Bloomington; this morning Shawn had an appointment with an oral surgeon to have a biopsy of some spots on his tongue. The appointment was for 9:00. We were going to pick Shawn up at 8:30 so we'd get there with plenty of time to fill out the paperwork that comes with seeing a new doctor.

We woke up, went to Bloomington Bagel for a quick breakfast and got back to the car at about 8:30. I called Shawn to tell him we were running a few minutes late and would be right there. He was sound asleep. His phone was set to wake him up at 8:00 but it said it was only 7:30. I looked at my phone which also said 7:30, very confusing. Dave insisted that it really was 8:30, so we went to the front desk and asked what time it was. They verified that it was indeed 8:30. So I called Shawn back and told him to wake up, we'd be right there.

We drove to the surgeon's office, out past the mall. Pulled into a place that said "Dental Office" except that wasn't the right place. Finally arrived at the correct location at about 9:01.

The good news for the day is that the oral surgeon doesn't think he needs a biopsy at this point. He said to come back if there are any changes, otherwise he wants to see Shawn again in three months.

Our phones are still showing the wrong time - so to know what time it is all I have to do is look at the phone and then add an hour. OR, I can look at my watch and add an hour (since the watch is still on Central time). At some point I assume the phone will be correct and I'll still be adding an hour at which point I will again not know what time it is.

But for the moment, I'd have to say that the answer to my question above is: "does anybody really care?"

30 hours in Chicago

Shawn's latest visit to Chicago is now over. He arrived yesterday morning at 8:45an and left today at 12:45pm - a total of 30 hours. Nothing like having a long leisurley visit! (Although we did manage to have a most enjoyable dinner with some friends last night, so we did at least get in a little bit of quality time. Barb and Jerry - thanks for an incredible meal!)

Yesterday he saw the doctor from the U of C hypertension clinic, who has changed around his blood pressure medication - changed the patch to a pill form of Clonidine at a higer dose; raised the dose of Bystolic, and swapped the three other meds to three new ones. He'll be monoriting the effects of these changes in the next few weeks and will be seeing Shawn again in a month.

This morning he had a pulmonary function test, will be talking to the pulmonologist once he gets the results of that test.

And Zeke got a brief glimpse of Shawn as well! He's looking around the house tonight trying to figure out why he's not still here. Oh, wait, that's what I'M doing...!

Surgeon report good; new round of doctor visits next week

Very busy weekend - we got back from New Jersey Friday morning, went right to the surgeon's office at U of C from Midway Airport. Actually, we went in shifts - we were still waiting for our bags when we should have been leaving, so Shawn went with Dave to the doctor, I followed along 15 minutes later by cab after getting the bags.

The surgeon says everything looks fine, just healing slower than usual but that sometimes happens. He examined the CT and said he doesn't see anything to worry about at this point.

Shawn and Arie went back to Indiana last night. Shawn will be back again next weekend for some FUN - we have tickets to see Rascal Flatts at Soldier Field Saturday night.

Then he'll be back the following Wednesday for more doctor appointments from the U of C crowd - hypertension center on Wednesday July 22, pulmonology on Thursday the 23rd. Looks like he'll be switching medicines yet again in the never ending attempt to get his blood pressure, tachycardia, and swelling under control.

and a full moon to end the day

as if the sunset wasn't beautiful enough, a few hours later we were treated to a spectacular moon rising over the ocean.

Sunset at the Jersey Shore

Shawn and I are at the Jersey Shore, where we keenly feel the absence of my grandmother. Today we watched my nephew take a surfing lesson. Tonight we went out for dinner, leaving just as the sun was setting over the bay.

ER this morning, Ribfest tonight!

Shawn and Arie came back to Chicago this morning, they took a train from Indianapolis - tonight we're going to Ribfest in Naperville to see Heartsfield. Not sure if they'll play Shawn's song or not, but even if they don't, it will be lots of fun.

We weren't sure for awhile whether we'd make it or not, as we picked them up from the train station and went right to the ER...

The last few days Shawn's scar has been hurting again; on Thursday he went to the clinic at IU. They said the skin didn't look infected, but he should see his surgeon who might want to do a CT. He called the surgeon and got an appointment for next Friday. Late last night, it started hurting more and was a very bright red.

This morning when we picked them up, the scar wasn't as bright red as it had been last night, but was still hurting much more than it had been on Thursday. And of course, the surgeon's office is closed today.

So we went to the ER at Northwestern, where they took blood and did a CT. No obvious sign of infection so they released him. We'll see the surgeon next Friday, and meanwhile we're still going to make it to Ribfest tonight (Shawn will be going backstage, maybe possibly also making an appearance onstage.)

I'm glad we're still going to make it to Ribfest, and even more glad that things are looking ok with the scar. Also, we now have a copy of the CT to give his surgeon next week.