Rainbow Fish

Praise God! Jayson continues to do well at home. He hasn't had a fever in the past 3 days and if this continues, we may reduce the number of antibiotics that he's been taking. Jayson has been more active the past few days.  On Thursday he was able to walk around with his walker a few times during the day.  In fact, he walked to the kitchen to check out what he wanted to eat from the pantry.  Henry walked behind him, holding on to a belt that was around Jayson's waist, just in case Jayson's legs got weak. He stayed a few hours in the family room, on the recliner playing video games and watching TV.

On Thursday afternoon, one of his hospice nurses came by to check on him, take vitals and examine the wound on his left hand and the pressure sore on his right heel.  Both areas were healing nicely and we will continue to keep an eye on them.  The rash that he had all over his body is almost completely gone.  His old and darkened skin is peeling gradually revealing his new soft baby-like skin.  We moisturize his skin daily Jayson has been annoyed at seeing his skin and so has tried to expedite the process by peeling away some of the skin that is drying out. On a few occasions he's given a piece of skin to a couple of friends.  I told him that reminded me of the story of Rainbow Fish who gave some of his shiny scales to his friends. If you haven't read this story, I highly recommend you do. It's a great story with a wonderful message.

Jayson is starting to get his appetite back. He asked for a cheese quesadilla from Taco Bell yesterday afternoon. He was able to eat half of it along with the Tropical Blast icee-type drink. At dinner he had about 4 tablespoons of beef caldereta with rice (from CFC Abad Family). He normally drinks a homemade banana-strawberry-spinach smoothie 1-2x a day and usually eats 1 whole banana each day.

The rest of Thursday was spent at home.  Emily & Alana Reyes visited him in the evening when they delivered some delicious roast beef dinner for our family.  My parents stayed over and watched Jayson part of the night giving my mother-in-law and sister-in-law a little break from night shift duties.  Jayson was able to sleep most of the night.

The following morning, Friday (Oct.25th), we woke up early to take Jayson to the NMCSD once again for lab work and blood transfusion. My parents were able to take care of Keilani and drop her off at school so we were able to go straight to the hospital with my mother-in-law & sister-in-law.  The drive from Murrieta took us almost 1.5 hrs. We only hit traffic on the 163 freeway near I-8.  Jayson slept through most of the way.  He woke up after an hour to eat some yogurt.  Unfortunately, he threw it up just as we got to the hospital.

We brought Jayson to the Oncology Clinic in 2 North and was seen right away.  They put him in the Infusion Room where they were going to do the blood transfusion.  Some blood samples were taken and were sent to the lab for testing.

After about 45 minutes, Dr. McManaman came in to examine Jayson and share the preliminary lab results.
His Hemoglobin (HBC) was at 9.4 (Normal range 9.5-14.8) and therefore Jayson didn't need to get any red blood transfusion.  His platelet level was low at 10, so 2 units of platelets were ordered.  His total white blood count (WBC) continues to improve. It was 1.5 today, up from the 1.2 this past Monday. Dr. McManaman said that if Jayson's blood count continues to improve we may be able to reduce his visits to the hospital from 2x a week to just once a week. We'll definitely be praying for that.

There are some additional changes to be made based on Jayson's lab results. For one, his potassium level was a little low, so Dr. McManaman recommended increasing the dosage of the K-Phosphate to 4x/day from 3x/day. His calcium level was also on the low side, so she recommended giving him calcium supplements. Dr. McManaman could still hear some crackling sound in his lungs due most likely to fluids.  She recommended getting Jayson up and walking more frequently. She also suggested having him sit up as much as he could instead of lying in a reclined position. She recommended a few exercises to strengthen his lungs as well. Dr. McManaman also gave Jayson the "OK" to play with his new puppy, Mocha. I'll make sure to take pictures of them to share with you.

RT Patti and Nurse Alex visit Jayson in 2N Clinic

While we were at the 2 North Clinic, the PICU staffed learned that Jayson was at the clinic.  Many of the staff members on duty came by in the morning to see him and say "hello".  They were all so happy and pleased to see Jayson doing well and told us how good he looks.  Many asked how we were doing and told us that they continue to pray for us.  It's great to know that their compassion and concerns continues even though Jayson is not at PICU any longer.

At about 10:45 a.m. Jayson was given his pre-meds of Tylenol and Benadryl.  Then about 30 minutes later, his nurse, Joe, gave him the 1st unit of platelets. This was immediately followed by the 2nd and last unit of platelet at noon.  Jayson was done with his blood transfusion by 12:30 in the afternoon.  We stayed for another 45 minutes to eat lunch.  Jayson had requested a Costco cheese pizza and berry smoothie from his dad. This was the first time in about 2 months that he had enjoyed pizza.  He was able to eat about 1/3 of the slice and the entire smoothie. We left the hospital about 1:30 in the afternoon and headed back home to Murrieta.

Nurse Joe takes care of Jayson at the Oncology Clinic.

Jayson again slept through most of the drive home. Luckily, we didn't hit too much traffic during this afternoon drive.  When we got home, Jayson played on his laptop and rested. He asked for his favorite homemade smoothie and then slept.  I had to wake him up a few times since then to give him his medication. It's past 11:00 p.m. right now and he's sleeping soundly without being given the Ambien medication for sleep. I hope that he'll be able to sleep the rest of the night.

He's excited about tomorrow. His friend Esther is coming to visit once again and they plan on watching Disney's "Tangled". Besides Esther, I'm sure we'll have more family and friends visiting him this weekend.

As always, we will continue to rely on God for strength and hope. We will continue to pray for Jayson's recovery and complete healing.   We will continue to enjoy each day we are blessed to have Jayson in our life and we will continue to show Jayson how much he is loved by us and his heavenly Father.