Hospital Stay: Day 6

I keep meaning to write that Toe is missing his friends. He has some really good buddies in middle school and he misses seeing them every day. I mean, he LOVES hanging out with his mother, but somehow, I don't laugh hard enough at his body/bawdy/fart jokes. I also don't talk about the right things. To compensate, we have watched The Captain Underpants movie three times in forty eight hours. J&A, F, and E: we miss you! Thank goodness we have been able to FaceTime with cousin G!

Today was a big, busy Monday. Toe's arm has been hurting him (you can see him favoring it like a broken wing in every photo) and last night it started giving him some sharp pain. They changed his PICC dressing and did an ultrasound on his arm/ PICC line today and discovered that he has a superficial blood clot in the line. To save you the suspense, I will say that there is nothing to worry about, it is not dangerous. It just hurts. We are treating it with heat packs and Tylenol as needed and he is encouraged to continue moving around as normal.

Creating D&D characters (in anticipation of a campaign with Uncle Greg).

 Here was our schedule today:
8am-IV infusion (30min)
8am - Respiratory therapy (30 min)
9:30 Breakfast
9:50 PICC dressing change
10am meet with medical team to discuss arm
10:15 School (1.25 hour)
11:45 Grandma Pam arrives
12:20 Saline nasal rinse
12:25 Respiratory therapy (30 minutes)
12:40 visit from a clinical researcher we know who told us the triple combination therapy was approved for people 12 and over!
1:00 Ultrasound
1:15 One of the school teachers stopped by to go over Toe's 504 plan
1:30 Lunch
2:05 results from ultrasound
2:20 IV infusion
This was the first real break we had in the day. My mom and Toe played cards while I napped. I REALLY needed the respite.
4:20 Respiratory Therapy
5:30 Exercise
6:30 dinner...
8pm  IV Infusion
We still have another respiratory therapy, another snack and pills, a shower and linen change, and bed prep before we can go to bed...

I asked Mom to walk me through Qi Gong today. We tried, but people kept knocking on the door and asking questions. Food was dropped off. When we were stuck in a corner with the food tray while a tech set up for an ultrasound, the therapist finished Toe's respiratory therapy, and the nurse came in to log meds, we gave up. I'm telling you, sometimes it feels like controlled chaos.

The good news is that Toe has been prescribed an XBox in his room with Kinect games - so in addition to walks around the hospital, he can get exercise in the room.

My time is up, the boy calls...