Sleeping With Bacon

The hospital WiFi was down since late evening yesterday and I wasn't able to put up the following post until now.

Tita Net, Cousin Trevor & Sister Kristen

(Wednesday, Sept. 25th 6:00 p.m.) After about 2.5 hours of sleep this morning, Jayson had to be assessed and his mouth needed to be cleaned.  So, his nurse had to wake him up.  Unfortunately, he could not get back to sleep and was again agitated, frustrated and tired.  We had a nurse stay at his bedside while I met with Jayson’s ICU doctor and nurses when they made their rounds. The nurse had to make sure Jayson did not try to get out of bed or pull any of the IVs attached to him. 

During the meeting I learned that Jayson was doing better than they had expected.  He still had the BiPap mask on, his lips were slowly healing and the bed sores and skin tear around his body were getting better.  But as usual, the team had some concerns.  Jayson was very restless and even though they increased the dosage on some sedation and relaxation medication, they had minimal effects on him.  One of his doctors also had concern that he was showing signs of delirium.  He was seeing things that weren’t there, sometimes trying to grab something in the air.  It was decided they would wean him off the sedation medication and give him another medicine that would be better for him. They also removed the BiPap mask and replaced it with a more comfortable VapoTherm tube that was just inserted at the entrance of his nostril.  This new tube humidified the air that he was inhaling did not put much pressure on his face as the BiPap mask.  He definitely prefers this instead of the BiPap mask and he is less annoyed by it.

Sleeping peacefully with his "Bacon" pillow

At about 11:00 a.m., they had to do oral hygiene.  He didn’t like this one bit.  He struggled and had to be restrained by several nurses and they cleaned his mouth.  The pain caused by the mucositis was just too much and just watching him squirming around to avoid it just tore my heart.  But I knew it had to be done and he would benefit from it afterwards.  The respiratory therapist also suctioned and cleaned his nasal cavity trying to get out most of the mucus in it.  It was a long 10 minutes, but Jayson got through it once again and he felt relief afterwards.  He was able to sleep a few minutes hugging his bacon pillow, a gift from his friend Janessa. The scene was just so adorable and peaceful that I had to take a picture and show it to you.

At about 1:00 p.m., the nurses bathed him, gave him the new medication and put him on a recliner for about an hour.  They faced the recliner towards the window so he can see the trees and chapel outside.  He fell asleep shortly after being put on the recliner.

Finally out of his bed!

At 4:00, oral hygiene had to be done once more.  We let the nurses do their jobs.  We noticed that he was more obedient with them than he was with his family. The nurses have taken great care of Jayson and many of them cannot help but be affected by Jayson’s story. They have invested their time, skills and words with him.

Jayson has shown many signs that he’s coming back slowly.  He’s asked for some fruit loops to eat.  Unfortunately, his mouth and most likely his throat are still filled with blisters which will make it very difficult to swallow pieces of food.  We hope that he’ll be able to eat soon.  Jayson has also asked for his cell phone.  I guess he wanted to check his messages from the past 2 weeks.  I know that the day he asks for his laptop to play video games with his friend is the day that I know Jayson is feeling good.

One thing I’m very proud of is that Jayson still has his manners. When his Grandma Del was watching him, he had asked for water and he said “please”.  Also, while his nurse was cleaning his mouth he kept moving his head side to side trying to avoid it.  But when it was finally done, he apologized to her saying “I’m sorry.”   It’s very comforting to me as a mom to know that despite all the pain and suffering Jayson has endured, he remains polite, well-mannered and grateful. 

I am so very hopeful for tomorrow.  The positive improvement Jayson has made these past 36 hours has brought so much relief and joy.  Jayson still has a long road ahead.  He still has the AML (Acute Myeloid Leukemia) and the Aveolar Rhabdomyosarcoma cancers to deal with.  We are praying that his bone marrow recovers quickly and start producing the normal white blood cells his body needs to fight off infections.

My dad has often used a battle scene to describe Jayson’s fight against cancer.  He’s told him that he (Jayson) is in the frontline in the battle, but he is not alone.  He said that he would be behind him with the bullets. My sister, Jannette, was listening as my dad shared this with us and Jannette jokingly asked my dad, “Yes you have the bullets, but do you have a gun? Or are you just going to throw the bullets at these cancer cells?” After laughing, my dad continued his story and told Jayson that he has an army of people behind him to support him every step of the way.  And each and every one of you who has ever prayed for Jayson is in that army.  

With dad and older brother, Justin

Our goal in this battle is to bring down each and every cancer cell that has invaded Jayson’s body. Right now, his bone marrow is not making the normal white blood cells to help fight off infections. His oncologist believes it will take at least a month for Jayson’s normal white blood count to go up or maybe even longer because he has two cancers to deal with.  But I’m confident that we can help Jayson once again.  We have a new prayer campaign to help him produce the white blood cells he needs.   Let’s give Jayson the ammunition to fight the cancer cells.  Let’s pray for his bone marrow to begin producing the healthy white blood cells he needs.  We were successful with the “Pee! Jayson! Pee!” campaign and we will be successful with our “WBC Production” campaign. “WBC” can appropriately stand for “White Blood Cells”, but I prefer a more powerful stand, “Will Beat Cancer!”

Thank you once again for your prayers.  Let's all give glory and praise to our almighty Father, for it is because of His grace and mercy that Jayson has been able to endure everything these past 2.5 weeks.  It is because of Him that Henry & I are able to take care of Jayson. God has given us the strength to stand up when we feel we're about to fall. He has given us the guidance and wisdom to make the right decisions when we need to.  He is our rock and Savior and we will continue to trust and rely on Him.\