An early drive back to Bloomington

We woke up early this morning to get on the road, left Oak Park at 5:20.  The early start paid off - not only was traffic non-existent, but we also got to  watch an awesome sunrise from the car.  

Dave and I are staying here till Tuesday morning - tomorrow we'll help Shawn get groceries and get settled in.  I think he's more ready for us to leave than we are to leave him.  

See more photos here.

Do No Harm - Post from Shawn

Yesterday we went to University of Chicago for follow up appointments. The overall message from the endocrinologist is that the tumor is there but at this point, he's not sure where it is. Our best bet is still that the spots in the lung are very small carcinoids but right now, they are too small to do anything to. He referred to any other extreme measures as doing more harm than good and he said his job is "to above all, do no harm". Eventually, I know this team of doctors will be able to cure this thing but right now, we're going to treat the symptoms and hope it helps.

We're going to Northwestern today for a few more exotic blood tests and then I'm going to get ready to go back to IU very early Sunday morning. One of these days, there will be good news to put up here.

Out to dinner!

The weather is beautiful, Arie is here, and we are celebrating by
going out to dinner. :-)

Taking a walk!

A nice sunny day here in Chicago - quite a change from last Saturday's deluge. Shawn ventures outside for the first time since we got home. He made it almost to the end of the block and back. Now he's taking a nap.

Tomorrow maybe a full block as long as the weather holds up...

thymic hyperplasia, no sign of a carcinoid

Unfortunately the report from pathology is that while the thymus was too large and may have been contributing to breathing difficulties, it is not the location of the carcinoid that is still the best theory for what is causing the majority of Shawn's symptoms.  

In fact, we had started to suspect this in the last few days as we've seen a few episodes that seemed awfully close to a spell.  But it was hard to tell for sure, as he also had a temperature that could account for the flush face and with his level of inactivity the blood pressure wasn't overwhelmingly high.

Tonight as if there were any doubt, after his most active day since the surgery he had a full blown version with blood pressure of 204/89.  As of tonight, he's now back on all the same medicine he was taking prior to surgery and we have an appointment on Wednesday with his endocrinologist to talk about next steps.   

A boy and his dog

Zeke is glad to see Shawn back home, and we're glad to see Zeke again as well. A HUGE thanks to Warren, Julie, Eli, and Rachel (and Ed) for taking care of Zeke this past week.

Shawn was awake and downstairs for quite awhile this morning, now taking a nap but about to get back downstairs as soon as he wakes up.

Wind is the Wonder Drug

Our first day home has been both wonderful and rocky. Wonderful to be
back in our own beds, so much more comfortable than the hospital.
Rocky in that Shawn's temperature continues to dance around between
100 and 101. Briefly near 102 last night but no higher than 101 today.

The doctor said that the best guess at this point is still the lungs,
and to continue with the deep breathing exercises. Wind is the wonder
drug; he just needs to keep forcing it in his body.

We're all also suffering a little from sleep deprivation I think. It
took an awful long time last night to figure out all the meds he's on;
finally I got it all down on a spreadsheet so we could make sure he
got the right pills at the right times!

Last night I think he slept 6 consecutive hours which is about the
longest any of us have had since last week before the surgery.

He's napping now which means I should be as well.

Sent from my iPhone :-)

There's no place like home

I think this picture says it all.

On the way home!

Not quite timed well enough to miss rush hour, but we're taking local
roads. And Shawn is now sound asleep.

Waiting

Oh yeah, and Shawn is ready too!

:-)

Everyone is ready to leave!

We're all packed up and ready to go - waiting for the nurse with the
final paperwork.

Going home today!

Just got word that we are going home today!!! Not quite sure when,
one more set of vitals and a few more visits left first, but then we
are OUT of here!!!

Sent from my iPhone :-)

Long walk - the return

L o n g walk

Today Shawn walked all the way down this long hallway. Stopped and sat  in the chairs at the very end for awhile and then came all the way back.  Another trip planned for later today after a nap!

not going home today

The night before last, Shawn had a fever of close to 104.  It broke yesterday morning, but in the afternoon it started back again - although lower, only 102 this time.  Last night they did lots of tests, some of which aren't back yet.  His white blood count is elevated but stable since the surgery. When not on the oxygen his oxygen saturation is also still too low.  At this point, the best guess is that his lung is still collapsed.  So the order of the day is to continue the breathing exercises and walking and see how it goes.  They won't release him until his temperature is down and O2 level is up.  

more photos

Some more photos from the last few days...

THANKS!!!

A very hearty thanks to Susan for the edible bouquet (and balloon),
Hans & Cathy for the flowers (and balloon), Lori, Greg, Henry and Sam
for the monkey (and big balloon!). Also Karen's photos of Shawn and
Arie are helping to keep Arie here in the room with Shawn even while
she is in Indiana.

And thanks to all of you who have been sending us your healing
thoughts through your calls and emails and text messages and emails
and blog posts and facebook posts!!! We are truly blessed to have
each and every one of you in our lives. I don't know how we would get
through this without you.

Smile

The balloon is from Lori, Greg, Henry and Sam. In the reflection you
can see Shawn getting a breathing treatment.

Rocking and rolling...

Here he is, doing his job - walking AND breathing!!!

Doing a great job!

walk and breathe

Shawn's job for the day: get pain under control, deep breathing, get out of bed and walk.  That's it, all he has to do all day long is walk and breathe.  May not sound like much but I think it's going to be a challenge nonetheless.

They just took out his chest tube this morning. Not much fun but now there's now one less tube in him. They are also switching pain medication today. Hopefully that will help him conquer both the walking and breathing.

Fun and games

Shawn is out of recovery and already in a room! He's mostly sleeping,
wakes up for brief amounts of time and then slips back to sleep.

He has to take 10 deep breathes an hour on this fun contraption. The
little blue arrow at the bottom shows how far he can move it, just
below 500 so far.

The nurse said we're going to have him up and walking later tonight.

Surgery FINISHED! :-)

Just talked to the surgeon - it's over and everything was fine; no problems with his blood pressure.  The thymus is out and being sent to the lab, will be about a week until they know more.  

He's on his way to recovery now.

Happy drugs

Photo from preop earlier this morning. Actually I think this was just
before the drugs, obviously in anticipation of them though.

surgery itself just started

just heard from the nurse; the surgery just started.

Take my thymus please

We are here at the hospital waiting to go back to pre-op. Check out Shawn's cool pants - pajama bottoms actually. (when I saw these last  week I just had to get them for him)

Shawn is anxious to get this show on the road so he can get his happy drugs!

a heart stopping moment

This morning I called to pre-certify Shawn's upcoming hospital stay with my insurance company. I'm talking to a very nice woman who is talking to me and typing in the information she needs. She asks me to verify his name and date of birth and I do. All the sudden she says "Oh my god". Then "oh, no, I don't believe this" and "oh my". At this point she's speechless and I'm thinking something has happened to my insurance, they've dropped Shawn from the policy, or there's some clerical error but can't be fixed in time for the surgery... my heart is quite literally in my throat. I think at this point as all these things are running through my mind I'm also holding my breath.

Finally she says "I have a son with the same name and almost the same age - and I live a block away from you in Oak Park!"

Once I peeled myself off the walls and started breathing again, we continued the call. She's only lived there about a year so I don't think the two Shawns know each other, but it certainly is a small small world.