Monday, August 29, 2011

Hurry up and wait

I realized my last post probably didn't make much sense unless you happen to keep up with our twitter or Facebook feeds.  I intended to write a nice, well thought out post tonight.  However, Keegan has been moaning/crying/rolling around in what might be GI pain or "looming fever" pain intermittently since about 8pm.  Things never go quite as planned around here thought, so I can't be too surprised.

So in lieu of a lovely narrative, I present you with bullet points of the last few days:

  • WEDNESDAY NIGHT: I posted that Keegan's fever had gone on 4+ days and may or may not be gone.  It was gone thankfully.
  • THURSDAY: Keegan refuses to get out of bed and seems to be feeling crummy despite finally not having a fever.  We know that many of his labs were off.  Between this apparent turn for the worse and Hurricane Irene barreling toward the east coast, things went into hyper-drive to try to admit Keegan to the hospital here, get insurance approval for medical air transport, and fly him to Boston Friday morning.  I spend all day getting the house ready while trying to accommodate Keegan from bed.  Without going into detail, suffice it to say it was sheer craziness trying to do all that and stay in constant contact with the two hospitals to see what would happen.  Around 3pm, it seemed we were going.  By 5pm, it was a maybe not, but they admitted Keegan anyway due to everything else from the week.  By 7pm, it was a no-go.
Thursday in bed.  Reading and resting.
  • FRIDAY:  Keegan seems to be feeling much better.  We decide to hold off on his infusions for a few more days and recheck levels Monday.  We decide to go back home to wait out the storm and spend as much time as possible together as a family.  There wasn't anything to be done at the hospital that we couldn't do at home.  We left with instructions to return immediately if another fever hit, although we can't really predict them anymore since last week's was so uncharacteristic of the previous ones.  Around 5pm, we receive word that insurance approval is in and good to go. Now, we just wait on Irene.
Keegan had a pretty good weekend overall.  It's hard to look at him on a good day and realize how sick he can be the rest of the week.  We know this trip is necessary, but it doesn't make it any easier.  Fever hasn't returned yet, but we think he may be in the "simmer" stage.  With the apparent discomfort he has been dealing with all night, we may be in for a whopper here soon.  

The bright light in all the craziness of this week is spending some extra snuggle time with this beauty.  
I sure am going to miss her.

I will post more tomorrow as I know it, but the goal is to be Boston-bound by Tuesday or Wednesday.  If Keegan stays out of the hospital, we will try to do an outpatient-to-inpatient transfer, where he is picked up by the transport team from clinic.  If he doesn't, we will do inpatient-to-inpatient.  The hard part now will be getting a commercial flight for the parent that doesn't fly with Keegan (likely me, as my tolerance for small planes is virtually nonexistent).  Ok, more tomorrow.  Better get some sleep while I can, since it looks like a very long night ahead for our Bug.

1 comment:

Anonymous said...

Maddie - This is Tammy Day at SW and wanted to let you know that if you need help with a flight you are welcome to one of my passes and we can try and find something to get you there. Feel free to let me know as I'm happy to help as I know Linda is out of town. Thinking of you all.