Wednesday, August 23, 2006

August 23rd-28th: Beads of Courage

WEDNESDAY, AUGUST 23, 2006 09:01 PM, PDT

Parent's Note:

A quick note tonight while I still have laptop battery. I am sitting next to Keith; awake, mostly comfortable and minus his breathing tube!. He was taken off the respirator around 3:30 this afternoon. Keith did a great job again helping the doctors today and was brave as usual. He spoke a few soft words along with lots of gestures asking to fix this or move that. As far as I am concerned, I'll do whatever he wants.

He still looks like a science experiment with tubes and wires going here and there but even these are slowly disappearing. His medications have been reduced again today and if all goes well we may be back upstairs in the oncology suite in the next day or two.

THURSDAY, AUGUST 24, 2006 10:12 PM, PDT

Parent’s Note:

Keith is weak and very exhausted but he continues to exceed the doctor’s expectations for recovery. He had three more catheters removed today! (that leaves only his Broviac line, one feeding tube, a pulse / oxygen sensor, 4 connector pads for his vital stats monitor, a nasal oxygen cannula and a bunch of bandages as reminders of what he has been through). It is actually possible to recognize him again!

A physical therapist met with Keith today to work on trying to get his body moving again and he now has a bunch of little exercises to work on. Compared to a Park Pool swim team workout this would seem like a snap, but for Keith now just breathing deeply, lifting his arm and even swallowing are each huge efforts.

The plan is still holding that he should be able to leave the ICU sometime on Friday and return to 5th floor oncology unit. The friendly nurses upstairs can’t wait to have Keith back under their watch again.

As far as Courage Beads go…

Soon Keith should feel good enough to sit with Heather and add up all of the beads he has earned over the last week and a half. Seems to me all strung together he must have earned enough to rig a ship.

We’ll see…

FRIDAY, AUGUST 25, 2006 06:59 PM, PDT

Parent's Note:

A great day. Keith is using his voice again and is breathing without any supplemental oxygen. He is also regaining some strength in his muscles that even surprised the physical therapist. If it weren't for his IV nutrition he would be totally 'unplugged'.

We are still in the ICU today, but not because Keith isn't ready to leave - it's just that the nursing staff on the 5th floor isn't able to take another patient right now. It looks like we'll make the move on Saturday sometime.

It's wonderful to have our buddy back...

SATURDAY, AUGUST 26, 2006 09:37 PM, PDT

Parent's Note:

As planned Keith has changed addresses again and has returned upstairs. His new room is much more accommodating for overnight parents than his previous quarters in the ICU so we are thankful.

We are also thankful that we can once again resume the original game plan of continuing his treatments and beating his cancer.

Keith continues to get stronger even as his hair begins to fall out. The fog of the last week seems to have lifted and sadly Keith has come to realize all over again that his cure will be a long ordeal. He really misses his cat and was sad that his grandmother Annie needs to go back home. On the bright side though, Keith's brother Scott visited yesterday and today which cheered him up quite a bit as did seeing the 'M Go Keith' banner signed by many of the U of M football team that his Aunt Nancy and Uncle John made happen.

Of course this website and all of the guestbook entries will become more and more important for him to stay in touch with his friends and family, especially as he is now beginning to be able to read the entries and understand how much support and encouragement he has beyond the walls of his room.

Heather stopped by yesterday to hand out a few more 'Beads of Courage' There had been so many procedures done over the last week or so that a nurses report will be needed to account for all of the beads he has actually earned, but she let him choose five super special courage beads for what he has just endured. We strung them up and he seemed proud and pleased.

I'm hoping that maybe tomorrow Keith can begin to use his own voice again to fill these journal entries.

OK, I'll help a little...

SUNDAY, AUGUST 27, 2006 10:26 PM, PDT

“I was able to stand up and walk a little today even though my legs are kind of weak. It felt good to get out of bed.” Keith

Parent's Note:

Keith was able to start eating a bit as well - clear liquids and such - on his way to having his feeding tube removed. He is doing so well and feeling very comfortable now without a lot of medication.

His white blood cell and platelet counts are up which is great news.

Tomorrow we'll find out what's in store for the next week as the doctors huddle and refine the game plan.

MONDAY, AUGUST 28, 2006 09:48 PM, PDT

“My mom and the physical therapist helped me walk out of my room to the end of the hall and back. I was pretty tired after that but I was glad I did it. I also got to eat some ice cream and fresh raspberries today.” Keith

Parent's Note:

A great accomplishment for Keith ... I wish I could have seen it - almost like seeing your child take his first steps again. The physical therapist and Josie teamed up to help Keith - one supporting Keith, the other pushing his IV tower alongside.

Keith got the remaining beads of courage owed to him and he now has a whopping 90 of them not including his name beads!

I think we are going to need to start another strand; there's not much room left on his current one.


Bone Marrow Aspirate/Biopsy = Beige
Course of Chemotherapy = White
Central Line/Port/PICC Line Inserstion & Removal = Orange
Clinic Visit = Blue
Emergency/Ambulance/Unusual Occurence = Magenta
Hair Loss/Thinning = Brown
Isolation/Fever/Neutropenia = Lime
Lumbar Puncture = Tortoise
Morphine/Dopamine/PCA Infusions = Purple
Pokes(IV Starts, Blood Draws, IM injections, Port Access) = Silver/Black
Radiation Treatments = Glow in the Dark
Tests/Scans(EEG, ECG, ECHO, MRI, CT, Bone Scan, Gallium..) = Light Green
Transfusions = Red
Tube Insertions(Catheter, Chest, NG, Foley) = Aqua
Sleep over at Hospital/Patient Admission = Magic Bead
Stem Cell Harvest/Dialysis/TPN = Dark Green
Surgery = Silver
Transfer to the PICU = Square Heart


Special Accomplishments and Recognition = Special Selection
Bone Marrow Transplant = Fimo or Glass Selection


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