Day 117 -- (Day +9)

Saturday.  Riley continues to have fevers.  Ugh.  Because of the fevers, the doctor tested Riley's blood again this afternoon.  His platelet count from his early morning draw was 37.  Acceptable for our situation.  What the doctor explained is that fevers burn up your platelets.  They are sensitive little things.  So his afternoon platelet count was 22.  Unacceptable.  Riley needs a transfusion.  Because of his continued reactions to platelets, our doctor spoke to the blood bank again and they agreed to "volume reduce" his platelets today.  The bag is put in a machine that spins off the plasma from the actual platelets.  The plasma is where they believe his reaction is coming from.  It takes an hour to spin them and another hour sitting in a dark room to "relax" (again... sensitive, huh?)  Riley received the platelets this evening and believe it or not, still reacted!!  Not as severe as before, but he wheezed and crackled.  Again, he received steroids, breathing treatments and benadryl, along with an x-ray.  My poor boy.  He handles it very well.  Just a fact of life for him I guess.

After the evening with Riley settled down, I went home for the first time in almost 3 weeks.  The last several weeks, our house has had germy bugs.  Coughs and stomach flus.  I stayed away for fear I would get it and  1. Give it to Riley and  2. Not be able to be with Riley during the hardest part of this whole ordeal.  Thankfully our household felt better and I was able to see my kiddos for an unusual Easter.  Vince had to work until 11:30 at night, so we gathered then for an Easter Egg Hunt in the yard at midnight.  (Nana and Papa were helping for the weekend as Grandma and Grandpa had to return to Las Vegas for a few days.) 

We had a wonderful and crazy time together!  Good thing my kids are such night owls!!  We were up until after 1 AM!!  This is an unusual year.  Our kids are really amazing to handle it all with such sweet spirits!!  I am thankful to know that we all will be together again soon! 

Labs today:
White blood cells: .1  (normal 4.5 - 13.5)
Red Blood cells: 10.3 (normal 13.5 - 17.5)
Platelets:  AM 37   PM 22  (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 116 -- (Day +8)

Friday.   The last several days have been hard.  Riley hasn't been eating at all.  He cannot even swallow his own saliva at times.  They have a device set up for suctioning that out when he is unable.  He is coughing and gagging up gunk, which makes the pain in the throat unbearable.  Thanks to morphine, he is managing.  He has a morphine drip which now gives him 3.5 mg of morphine every hour and then a button that he can push that will pump in a quick 1.5 mg every 10 minutes if he needs.  
Things might be turning around a little...  Last night Riley asked for an Eegee's slush.  I ran out and grabbed one... flavor of the month, "Orange Dream".  Yum!   I am so thankful that he is comfortable enough to get something in his tummy!   The doctors aren't pushing anything (because he does have the TPN), but agreed that if he was able to get something... anything down, even water, that would help his stomach from "falling asleep" to its job.  It will make eating again easier if his stomach stays awake.  He has sipped on water up until this point, but can't always keep it down.  I was so happy that he is able to try new things!  Everyone is thrilled with how well Riley is doing through his transplant.  Yep, he is hanging in!
Other happenings for the day...
Riley was low on red blood cells and had 2 units transfused today.  Fevers continue.  He also continues to have respiratory come up to check him out and give treatments for his wheezing.   ---Another day done.

Labs today:

White blood cells:  < .1 (normal 4.5 - 13.5)

Red Blood cells:  7.1  (normal 13.5 - 17.5)   2 units transfused

Platelets:  48  (normal 150 - 425)

ANC:   0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)



    

Day 115 -- (Day +7)

Thursday.  Riley's platelets were low today and he needed a transfusion.  He had all of the pre- medications and guess what??  still had an allergic reaction!!  His breathing gets seriously wheezy and he tightens up.  Thankfully, the doctors are prepared for Riley's sensitivity and "respiratory" came up, he received steroids and and extra dose of Benadryl.  Oh, LIFE.  This is a picture of Riley continuing his breathing treatment during the day.  He's tough!!

Sister Clark, Riley's seminary teacher, came by today.  She brought a basket full of "EGGStrordinary thoughts" for Riley!  Notes written from his classmates and also a scripture reference for Riley to look up which refers to a character trait of his.  How wonderful!!  I continue to be amazed and so grateful for the huge support that she has been for Riley this year!  Especially on harder days like this!!  The timing was perfect!

Labs today:

White blood cells:  .1   (normal 4.5 - 13.5)
Red Blood cells: 9.9 (normal 13.5 - 17.5)
Platelets: 27 (normal 150 - 425)  (one unit transfused)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 114 -- (Day +6)

Wednesday. 
This mornings line up.  Pills that cannot be switched to IV, but have a liquid form. (easier to go down:) and mouthwashes.
From left to right:  Ursodiol (liver), Amlodipine (blood pressure medicine), Tylenol (for his fever this morning),  Sodium Bicarbonate mouthwash,  saline mouthwash,  Chlorhexidine mouthwash.

The IV medications on his massive IV pole right now...

Cyclosporine (anti rejection medicine)

Methotrexate chemo (given on day +1, +3, +6 and +11 to suppress his immune system to allow the new cells to take over)

Voriconazole  (anti fungal)

Acyclovir  (antiviral)

vancomycin  (antibiotic)

cefepime  (antibiotic)

TPN  (IV nutrition)

Morphine  (pain)

Labs today:

White blood cells: .1   (normal 4.5 - 13.5)

Red Blood cells:  8.8   (normal 13.5 - 17.5)

Platelets:  41  (normal 150 - 425)

ANC:   0   ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 113 -- (Day +5)

Tuesday.  This is the long cold hallway to get to the cafeteria in the main UMC hospital.  In the day this hallway is full of doctors, nurses, patients and visitors busily going about their day.   But at night, it is a very different place!  EMPTY.  Almost spooky.  Lately I have been busy around dinner time and Riley isn't eating anyway, so about 10pm I realize... "I'm hungry".  The cafeteria makes a mean breakfast burrito and they start serving breakfast items after 9 at night.  Tonight walking this quiet hallway, I realized again what a weird existence we are living in. 

Labs today:  
White blood cells:  < .1   (cannot be measured)  (normal 4.5 - 13.5)
Red Blood cells: 9.6  (normal 13.5 - 17.5)
Platelets:  31 (normal 150 - 425)   (1 unit transfused)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

*fevers today

Day 112 -- (Day +4)

Monday.   Warning... This photo is not for the faint of heart...

This evening Riley and I were watching "24".  (Ooo, it's getting good... end of season 4!)   He all of a sudden reached for his "bucket" and started to heave violently.  Out came some mucus and then ...plop.  A huge chunk of... ? 

Just this morning the doctor warned Riley that he would be sloughing off tissue and it would be coming out at some point.  Thankfully we had this warning because if not, this would have freaked us out.  Even with the warning, it was pretty disturbing.  We called for the nurse and as she looked, she just smiled and said, "yes, this will continue to happen.  Looks like maybe part of your throat or esophagus."

 Riley handled it extremely well.  We took some pictures, called Vince and discussed this sloughing process with several nurses (as many of them heard the excitement of our room).  Amy, our nurse asked if Riley wanted to keep it.  He agreed and she put it in a sterile container with some saline. 

I know... GROSS.  -- But this is where we are right now--

It measured about 4 inches in length and you can see the hollow, tube like center. 

Riley, you hang in there!! 

The conditioning chemo that he had before transplant is causing some rough side effects.  We are assured that as soon as his new cells engraft and start to develop, that his insides will heal.  And that the healing process, once it begins, will be quick.  

 --Counting on it!!!

Labs today:
White blood cells: .1  (normal 4.5 - 13.5)
Red Blood cells: 9.6 (normal 13.5 - 17.5)
Platelets: 46  (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 111 -- (Day +3)

Sunday.  My perspective today.  ...   where what really matters in life is very apparent.

Riley's IV pole has grown even larger.  It got a new "brain" today on the back side with many new channels for adding on medicine. 

Riley woke up moaning this morning.  The sores are getting worse and he spiked a fever this morning.   They took a blood culture and got him started on 2 heavy hitting antibiotics.  They gave him a dose of morphine for the pain and encouraged him to switch to a PCA (patient controlled analgesia).  This would allow him to control the morphine when he is in pain.  It will administer 1.5 mg per hour and if he needs more, he can push the button and it will give him a boost more.

At first he was opposed, but as the morphine wore off and his pain continued, he agreed. 

So today was the day he became an "octopus" as Jacquelyn our nurse put it.  Many tubes, and lines. 

Labs today:

White blood cells:  .2  (normal 4.5 - 13.5)

Red Blood cells: 10.3  (normal 13.5 - 17.5)

Platelets: 76  (normal 150 - 425)

ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)