#StayStrong

Jayson receives excellent care.

Henry & I have been taking turns being at Jayson's bedside during the weekdays. Early this morning, around 2:00-3:00 a.m., while I was sleeping Jayson was coughing a lot. The nurses and respiratory therapist (RT) were suctioning out more fluids from his lungs, mouth and nasal cavities.  During this time, he was more physically responsive. My husband said that Jayson tried to move his legs to the side of bed a few times as if to get off the bed.  He also said that Jayson was a lot stronger and put more of a fight to move his arms and legs while the nurses and RT were suctioning out the fluids.  In fact, it took more people to restrain him as he struggled.  I ended up waking up during the commotion and my husband let me take his spot at Jayson's bedside.  I stood to his left, holding his hand with my left hand and caressing his head with my right. As the RT suctioned out the fluid, he continued to cough out more fluids from his mouth. There was a look of desperation and plea for help in his eyes that I hadn't seen before. It was breaking my heart to see him going through this and a feeling of helplessness came over me.  He was looking at me as if to say, "Mom, please help me!", but all I could do was try to calm him down so that the nurses and RT can do their jobs. I remember apologizing to him during this time saying sorry that he had to go through all the discomfort, tests and procedures these past 13 days. It was a tough 5 minutes, but he came through it once again.

Soon after this, the dosage of his sedation medication was slightly increased to give him time to rest.  He had a restful 4 hours sleep.

In the morning, I met with the doctors and nurses during their rounds.  Jayson's kidneys are "perfectly well" per Dr. Eyzaguirre. Jayson continues to run a fever throughout the night. It's been about 3 days since the onset if his fever.  It's been fluctuating up to 103.3, but when his fever does go below 100, it doesn't stay there for very long.  All lab studies have been either negative or results are still pending.  He's been given 3 different antibiotics recommended by his Infectious Disease (ID) physician, Dr. Arnold, because the antibiotics that he was taking did not stop the fever. I had asked Dr. Eyzaguirre if there were any other reasons for the fever and he said it could be due to the rhabdomyasarcoma cancer he has. They hope that these new and different antibiotics will help with his fever.

Jayson & Katrina - A bond like no other

Jayson was bathe this morning. While the nurses cleaned him up, they also check for any bed sores and unfortunately, they found a few on his back. The nurses have also noticed the early stages of foot drop. After lying down for a prolonged period, the top of the foot has a tendency of dropping forward.  So, the nurses propped up a pillow for support while they wait for a pair of Helix Medics boot from the Adult ICU.  These boots will help prevent the foot drop.

Jayson had completed his first round of chemotherapy yesterday and we are starting to see some of the effects of it.  His hair is starting to fall off. When he was bathed this morning, they shampooed his hair and when they lifted his head, there were many strands of hair on his pillow. Of course, this is a common side effect of chemotherapy. His white blood count is still very low and his bone marrow needs about a month to recover and start producing white blood cells.

Last night Jayson's cousins, on his dad's side, came to visit him. He responded to the older cousins, but he was more responsive to his cousin Katrina, who is about his age. We referred to the two of them as the twins of the Adams family.  When Jayson heard Katrina's voice, he looked towards her and lifted his right hand.  Katrina then held his hand.  Their special bond remains strong even when Jayson is heavily sedated.

Jayson's Entourage