Day +32

Monday.  Another day at the clinic. 

Labs today:
White blood cells:  3.6  (normal 4.5 - 13.5)
Red Blood cells: 12  (normal 13.5 - 17.5)
Platelets: 67  (normal 150 - 425)
ANC:  2016 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day + 30

Saturday.  I wanted to document Riley's bedroom door. Brenna made sure that Riley knew how happy we all were to have him home!  Sweet sister!   Bryant also made a sign for the bathroom door (which is right next door to his bedroom) that said,   "only for Riley!".  Thanks guys for making sure Riley is taken care of! 

Day + 29

Friday.  Another clinic visit this week.  Today Riley needed an infusion of pentamidine.  It prevents a certain kind of pneumonia.  You can't really tell from the picture, but Riley is accessed in his port and hooked up to the IV pole.  This infusion makes you feel really yucky.  Riley is brave and strong. 

I saw this sticker on a fridge in the clinic.   nuff said.

Labs today:
White blood cells:  3.7  (normal 4.5 - 13.5)
Red Blood cells:  10.9  (normal 13.5 - 17.5)
Platelets: 66  (normal 150 - 425)
ANC:  2224  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

 

 



Day + 28

Thursday.  This was my counter top when we came home from the hospital this past week.  I feel like a pharmacy.

Lets take a closer look at the number of  medication information printouts we received from the pharmacy when we went home.

 This is after cleaning out a cabinet in the kitchen to store all of the meds and mouthwashes and masks.  Now we are an official pharmacy.  :)

Riley's morning pills.  12 pills. 

Day + 27

Wednesday.   Today was a big day.  Around 30 days post transplant they do a biopsy and send results out of state for an ENGRAFTMENT STUDY.  This will tell us how well Riley has engrafted with the new cells.  How much of Riley is -Riley- or -Preston-. ?  We'll see.  
Riley has continued to have a slight wheeze and it was a little worse right before the biopsy.  He is a pro and took the breathing treatment like it was nothing.  Riley has endured so much and really not complained.  He is a brave boy!

We were so hungry after leaving the hospital.  We had to be there very early this morning and Riley could not eat anything because of the biopsy.  Riley woke up from the anesthesia wanting "Famous Daves"!  I would never turn down "Famous Daves"!  As we pulled into the parking lot, I was planning on getting food to go, but the parking lot was empty.  We decided to stay and be "regular".  It was past the lunch crowd and before the dinner crowd.  After wiping down the table with clorox wipes, we enjoyed a delicious lunch together!  

Labs today:
White blood cells:  3.6  (normal 4.5 - 13.5)
Red Blood cells: 12.3  (normal 13.5 - 17.5)
Platelets: 75  (normal 150 - 425)
ANC:  2664  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day + 25

Monday.  It was wonderful to go home yesterday, but here we are again.  We spent the morning in the clinic, running tests.  Bryant was so patient.  The Ipad is an amazing tool!  This picture shows the boys waiting while I am in the pharmacy line.  Riley loves... (not)... wearing a mask. Must be done. :)  We are just thrilled to be able to head back home, and stay.

This is a shot of Riley's lines.  The very visible line from his neck down to the central line on the right is his Hickman.  We have to flush it every night and cover it for showering.
The opposite side of his neck also has a little scar where his port line is.  It is not as visible in this picture but when the angle is right you can also see it just as much.  Not shown in this picture is his port.  It sticks out quite a bit, but he's just thrilled to not be accessed all the time any more.  He can shower regularly when not accessed because it is underneath the skin.  I call him "Iron Man". 

Day +24 GOING HOME!

Sunday.  This is the final cart load to go to the car.  Riley has been patiently waiting to be discharged, and for his mom to pack it all up!  ... Last minute instructions and goodbyes.  (We will be back tomorrow... in the clinic).  We then walk down the quiet hall with Brittney (our nurse today) and as we  get close to the front desk, we hear loud noise makers and lots of cheering!!  They have the whole front decorted and a gift for Riley and "THE GONG" is out waiting to be hit!  Whenever a patient finishes their treatment on the 6th floor, they get to hit "the gong".  We have seen others pass this stage.  It is very exciting for everyone! 

So this is me and my teary eyed face.  We have spent so many days and nights in this place, with these wonderful people that I was very emotional leaving today.  Words cannot express how thankful I am to them.  They have treated Riley with such respect, care and knowledge.  They have uplifted him with laughter and been there to ease worry.  They have become like family!  Many of the nurses have made sure to tell Riley that they only want to see him again as a VISITOR.  Not as a patient!That's the plan!! :) 

Labs today:
White blood cells: 2.7  (normal 4.5 - 13.5)
Red Blood cells: 12  (normal 13.5 - 17.5)
Platelets: 51  (normal 150 - 425)
ANC:  1836  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)