End of a long day

Zeke is helping Shawn relax after a long day. I don't think they are
going to let him come help out after the surgery though.

ready for surgery

Shawn came back into town yesterday afternoon, landing just after the worst of the thunderstorm passed by. (His plane actually arrived early but was then had to back up and wait while Midway's runways were closed for about a half hour. Our drive to Midway to pick him up was interesting - very heavy rain and lots of flooding on the sides of the road. At one point we were splashed with enough water that we couldn't see at all for a few seconds. But he landed, we picked him up, and he's now here in Chicago.

Today we were at U of C at 8:00 am for a chest x-ray; slight confusion over where to go and when we got to the right place another confusion over the order. All was straightened out quickly though, and everyone was very helpful and nice. Shawn liked the x-ray itself, over in a second rather than the hour and a half scans he's had recently!

After the x-ray, up to see the surgeon who talked more about what to expect. The surgery will take place sometime around 10am, we need to be at the hospital at 7:30. Surgery itself should take about 2 hours. We'll have the results from the biopsy of the thymus about a week later.

There are some private rooms and some 2-patient rooms, we won't know which he gets till he's ready for a room. (We can request a private room for $139 more a night, minimum fee of two nights. But even then it's not certain whether we'd get one. I think we'll take the luck of the draw and hope for the best.)

After the surgeon, we went to see the anesthesiologist. Shawn will most likely have an epidural to help manage pain post-surgery. They also talked about having an arterial line in during the surgery to continuously monitor blood pressure. Spent a lot of time going through his medical history, drugs he's on, etc. Then they took blood (Shawn gave a high rating to the nurse taking blood; didn't hurt and didn't leave a bruise!). Finally we were on our way. All in all, we were at U of C from 8-12.

We had lunch at Medici (Shawn and I both had calzone, very garlicky and very good! Dave had a burger). Shawn fell asleep in the car on the way home. We stopped to pick up a prescription at CVS and then Shawn went to meet a friend for coffee at Starbuck, which is where he is right now.

He goes back to school tomorrow. On Monday he's going to drop all but one of his classes and we'll go on COBRA since he'll no longer be a full-time student. But it may possibly only be for a few months. At the end of this year, a law called Michele's Law will go into effect. This law was first passed in New Hampshire in 2006; in October of 2008 it became a national law. The law prohibits insurance companies from dropping students from their parent's insurance policies for lack of full-time student status due to medical issues. My company is actually considering instituting the law in June. If that goes through, we'll only be on COBRA for two months - April and May. That will be awesome if it happens, but even without it he may be able to qualify for full-time student status again in June anyway; if all goes well he's hoping to take classes this summer.

He flies back into Midway on Wednesday afternoon; hopefully not in the middle of a rainstorm or a snowstorm. At the moment the weather forecast is for temperatures in the 40s and no precipitation, so all is looking good.

Less than a week before the surgery. One huge step in Shawn's journey...

Results back - no pheo

The results of the nuclear scan are negative - there is no sign of a pheochromocytoma; surgery on March 5 can be performed as scheduled.  

On the first day of the scan, they gave Shawn a little stuffed bear - you can never be too old to get healing power from a stuffed animal I guess.    

Scan is done

Well today was a MUCH nicer day - not raining and the sun is making a valiant effort at showing itself.  Much easier drive as well; we left the house at 7:36 and were at the hospital at 8:06!  A very easy drive when there's no traffic.  We even had time to stop at Panera before his 8:30 appointment.  

The scan was over a little after 10.  Shawn says his arms get sore from having them over his head for so long, and today he had to interrupt the scan briefly for a coughing fit.   But at least it's done now.  

No traffic at all on the way back - the advantage of traveling mid-day!  This photo was taken on the trip back to Oak Park - driving north on Lake Shore Drive.  Soldier field is on the right and you can just barely see the Sears Tower over on the left, hiding behind the trees.  

Now Shawn's playing Wii football, then taking a nap.  After that we're going to buy some nice comfy pajamas and have lunch at Ditka's in Oak Brook.  And then he goes back to IU tonight.  

Surgery scheduled for March 5

We met with the thoracic surgeon this afternoon who will be removing Shawn's thymus on March 5.  He said that even in the absence of any symptoms, the size of the thymus would warrant watching it, but given the symptoms he's had it should just be removed.  

The surgery will involve splitting open the breastbone and removing the thymus which lies just underneath.  He'll probably be in the hospital 3-4 days.   Then a followup appointment that next week after which, if everything goes well he'll be able to return to Indiana.  But actually, it turns out that will be right at the beginning of spring break, so he'll stay home an extra week anyway; returning to Indiana after spring break.  

This all assumes that the current nuclear scan is negative - the last part of that is tomorrow morning.  Those results should be available in a few days.  

So for now, Shawn will return to IU tomorrow night.  He has a pre-op appointment with the surgeon and anesthesiologist on Feb 27.   

We're all hopeful that this surgery will help resolve all Shawn's symptoms and he can finally concentrate on being a normal college kid!  

Grey gloomy morning

As you can see the drive to the U of C this morning was bleak. Traffic into the city was not great but Lake Shore Drive south to Hyde Park was empty. Got here just before 9.

So far today we've been in the waiting room at radiology, then to 5th floor DCAM to pick up a prescription, then to the pharmacy, cafeteria, back to the pharmacy, back to the waiting room at radiology.  Shawn's in there now having his first scan, he should be out soon.  Then we go back to the 5th floor for appointment with the surgeon.  Sort of feels like we're going around in circles...

Good news though - the scan started a little after 12:30 rather than 1, so we should make it to the 2:30 apointment without having to rush.  

Happy 20th Birthday Shawn

Here's what Shawn looked like 20 years ago today.  He's grown a little since then.  Shawn was born 6 weeks early at 6:46 pm on Feb  7.  He weighed 4 lbs, 15 1/2 oz (2260 grams).  I only saw him for a few seconds before they whisked him away to the NICU.  My second sight of him was a few hours later - he had tubes in his nose to help him breathe.  And his little tiny hands were on either side of the tubes, as if to pull them out.  I took one look at him and knew he was a fighter and he'd be just fine. 

He's still a fighter and he's still going to be just fine - this fight might be take a little longer but it is going to be just as successful.   

Nuclear Scan, Thoracic Surgeon Appointment

Next week Shawn has an appointment with a thoracic surgeon to talk about surgery on the thymus.  One concern with surgery is that it would be dangerous if he has a pheochromocytoma. So next week he's also going to have  an MIBG scan to be certain that the enlargement on the adrenal gland is not a pheo.  

So next week's schedule is:

• Tuesday night - fly to Chicago
  
• Wednesday 
  • 9:00am be at U of C for injection, 
    
  • 1:00 first scan.  Scan lasts exactly 1 1/2 hours
    
  • 2:30 meet with thoracic surgeon.  (Yes, cutting it a tiny bit close there, but the surgeon's office knows that he's in the scan until 2:30.  We'll call them when we're on the way up)
    
• Thursday - second scan (not sure what time yet)
  
• Thursday night - back to IU

cold morning

The last few mornings have been cold here in Chicago - right around 0 or just below. But then it gets warmer during the day. This leads to quite a dramatic scene on the river as the 'warmth' of the water hits the cold morning air.

I'd have stayed to look at it longer, except that did I mention it was COLD? And I have to take my hand out of a glove to take the picture.

Updates from Shawn

I have spoken with my Pulmonologist today and received email from the Endocrinologist.  The Pulmonologist has scheduled an appointment for me with the Thoracic surgeon at University of Chicago for next Wednesday at 2:30.  We will schedule that surgery at that appointment.  Before I can have surgery, the Endocrinologist wants me to go through an MIBG scan for pheochromocytoma as there was a nodule on the adrenal gland and major surgery with a pheo is dangerous.  I'll hopefully have more news soon but that's where we're at now.  

Shawn