What Will Tomorrow Bring?

Yesterday (Sunday, Sept. 29th) afternoon was fairly quiet.  Jayson was visited by a few family members - Aunts, Uncles and cousins.  Jayson was asleep most of the time, but he did wake up when he heard visitors. He raised his hands to his cousins, AJ & Matthew, when they came to visit him and responded to his aunts and uncles as they greeted him.  He also waved to a few of them as they stood at the doorway. All of them were so happy to see Jayson awake and get a positive response from him.

During the evening, he was trying to tell us something and when we couldn't quite understand, we pulled out the white board and had him write want he wanted to say. He wrote, "I want to go home". I was happy he was able to write a complete sentence, but at the same time, I was saddened because I had to tell him he was not well enough to go home. I told him we wanted him to go home as well, but his body still needed more time to get better.  Early in the morning, he also wrote he wanted a "Large punch".  So, today, Henry but him a large Gatorade fruit punch drink.  He is still able to drink through a straw, but we have to limit what he sips because he had a tendency of coughing right after he sipped some liquid.

At about 5:00 this morning, he was again having difficulty breathing with the vapotherm tube, so he was switched to the BiPap mask to help put pressure on his lung to push out any liquid in his lungs.  He was on the BiPap mask for about 3 hours and then was put back on the vapotherm.  He's been on this the rest of the day.

At 8:00 in the morning, he was put on the recliner for a few hours where he slept most of the time. He was moved back to his bed around 10:00 a.m. and was able to help nurses a bit, standing with assistance and sitting up a few minutes on the bed.

Jayson has slept most of the day, waking up only to drink juice or water. It's been a quiet day for us and I was able to catch up on some sleep which explains this late posting. I know many check on our blog to get updates and I will continue to try to get the latest info on Jayson as soon as I can. We are lucky that we have my mother-in-law with us almost every day to help watch Jayson and Keilani. Mommy Del has also been doing our laundry regularly while she stays at the Fisher House. More importantly, when she's at Jayson's bedside, she reads bible scriptures to him and talks to him.

There hasn't been any major change in Jayson's condition these past 2 days.  He still has some fluids in his lungs, but he continues to make excellent urine output. Today, his fluid differential was negative 2 liters. He is still getting blood products as needed. He still is running a fever and we wipe him down with cool face towels to help lower his fever. Jayson remains responsive to questions and still recognizes us. The goal to night is to keep him comfortable.

We don't know what tomorrow will bring.  But each day that arrives is another day closer to seeing Jayson's bone marrow begin producing new blood. According to one of his oncologist who came by this afternoon, the earliest this would be is about another week or two.  Let's pray that it'll be sooner because the sooner Jayson's bone marrow produces blood, the better chances Jayson has to combat any infections.  Please join me in continuing to pray for this.

Thank you once again for walking with Jayson in this journey.  We don't know where this walk will lead us to, but we hope it will be to a better place than where we are today.  I know for me, this journey has already strengthened me, my personal relationship with Jesus and my faith.  I also know that this has brought my family closer together and we are more aware and grateful for each blessing that comes our way. Thank you always for your prayers and support.  You are each a blessing in our life. Good night and God bless you.

Rejoicing in Your Strength!

Yesterday, Sept. 28th, was a good day overall.  Jayson had improved from Friday and is doing well at this time.

Jayson had several procedures done yesterday.  At about 10:45 in the morning, the ENT doctors came in to check Jayson's sinus area for possible infection.  They swab his nasal to get a sample of crust and will be doing a culture to check for any bacterial growth.  His doctors still don't know what's causing his 6-day old fever. It will take 2-3 days to see if any bacteria grows.

At 11:00 in the morning, his ICU doctor placed a PICC line on Jayson's right arm.  This is a special IV that goes through his vein and into his chest area.  He then received two units of platelets since his platelet count was going down.  After the platelet transfusion, his nurse removed the central access line on the right side of his neck.  Since Jayson was getting fewer medications and other fluids, the central line was no longer needed. There was also some concern that there may be an infection at that sight, but his ICU doctor yesterday said it looked fine. They will just continue to keep an eye on it. 

The rest of the afternoon was fairly quiet.   My sister-in-law, Melissa, helped my mother-in-law watch Jayson after lunch while Henry & I took a nap.  Our eldest daughter, Kristen, took Keilani out in the afternoon with their cousin, Natassia, to watch Disney on Ice at the Valley View Center. Jayson slept most of the day.  He would wake up once in a while to ask for water or to see who was talking to him.

His respiratory system seems to be improving.  He didn't have to use the BiPap mask on last night.  His nurses and respiratory therapist just kept him on the vapotherm tube and he was doing well on just that. His doctor and nurses are very pleased with his progress and we just hope his progress continues. 

Henry and my mother-in-law watched him overnight, while Kristen, Keilani & I slept in the next room. At about 5:00 this morning, another chest x-ray was done and according to his ICU doctor, it looks  a little better than the previous day's x-ray. I haven't seen this last x-ray myself so his doctor will print me a copy.

Henry woke me up at 5:30 and I sat by Jayson's bedside. My dad came in at 6:00 and took over and I was able to sleep for another hour.  My mother-in-law and I went to mass at 8:00 while my dad stayed with Jayson.

When I returned from mass, Jayson's medical team was gathering up to begin their rounds.  Luckily, I came back just in time.  As usual, they reviewed the activity of the last 24 hours and discussed changes to be made for today.  They will try to minimize the amount of blood products they will give Jayson today or at least delay the transfusion.  They want to continue to minimize his fluid intake while maximizing his urine output.  It has worked great so far.  He had a negative 2 liter differential (2 liters more going out then coming in) every day for the past 2 days.  They plan on slowly weaning him off the medication that is helping him pee. They will try to make some changes in the vapotherm settings to see if they can also slowly wean him off from the vapotherm and BiPap mask.  They continue to help fight against his fever.  He doesn't get too hot as often as he did and we've tried to lower his fever by wiping him with wet wash cloths. 

I know all of Jayson's doctors, nurses and staff are doing all they can to help Jayson.  They are also doing anything and everything they can for us, his family.  I tell them that even though this has been a difficult 3 weeks, it's been a positive experience for us.  The stress that we've felt is mainly due to Jayson's health struggles and not because of any issues with the staff here at NMCSD.  They have been a blessing and a source of support for our family.  We have gotten to know many of the staff members who've taken care of Jayson these past weeks and through us, they've gotten to know Jayson as we share stories with them.  They were all very happy to hear Jayson was extubated successfully and I told them they have played a major role in Jayson's progress.  

Right now it's almost 11:00 a.m. and Jayson is sleeping soundly.  I have yet to see him open his eyes this morning. Henry and our girls are still asleep in the next room.  We are expecting some family members to visit today and we're praying that Jayson continues to do better. We are also praying for my sister, Joanna, who would have been 41 today. Happy Birthday Joanna! May you continue to rest in peace.  We miss you and love you.

I'd like to end this post with a bible verse from Psalm 21:1-2 

"O, Lord, the king rejoices in your strength. 

How great is his joy in the victories you give! 

You have granted him the desire of his heart 

and have not withheld the request of his lips."

What's For Dinner?

First of all I want to say "thank you" to my brother for posting our prayer request yesterday when I couldn't. Thank you also for sharing your moment with Jayson with us.

Yesterday, after the meeting with Jayson's medical team, Henry & I remained in the staff room to talk to about what was discussed and to make sure that we both understood and agreed to what we had decided. After Henry left to be with Jayson, I stayed behind in the room alone, just looking out the window. I noticed what a beautiful, clear and sunny day it was.  There was a slight breeze allowing the leaves on the tree outside the window to wave. Then it struck me that we may have to wave good-bye to Jayson soon.  Tears swelled up in my eyes and the emotions just overwhelmed me. How could I say "good-bye" to my baby boy? How can anyone say "good-bye" to their child? There was no answer.

Our social worker, Heather, walked in and she sat and talked with me. She has been working with us from the very beginning when Jayson was first diagnosed with Rhabdomyosarcoma. She has been very supportive of our family over the past 2 years, almost. It felt good to just talk to someone who's familiar with the emotions that families in our situation go through. She had given me another perspective and I left the room more composed.

Dinner Menu: Cocoa Puffs, Milk, Orange Juice

During the late evening, Henry, Mommy Del & I sat near Jayson's bedside. Jayson was asleep most of the time.  When he woke up, he was trying to say something but we couldn't quite understand.  He then gestured with his hand forming a half of a sphere. Then I heard "cereal".  I quickly asked him if he wanted cereal in a bowl and he nodded yes. I asked him what cereal he wanted; he said "cocoa puffs" and "milk". So, we quickly asked the nurse if he can have some cereal with milk. She left the room to ask his doctor if it's okay. I'm sure there were concerns of possible complications from eating such as choking & vomiting, but I had made up my mind that we weren't going to deny Jayson this request. He was going to get his cocoa puffs and milk for dinner.

A few minutes later, one of his nurses brought in a box of Reese's Puff cereal.  It wasn't the Cocoa Puffs Jayson wanted, but we would make do with it.  Henry just took the chocolate flavored cereal balls and placed it in a bowl.  Then he smashed the cereal in smaller pieces, put it in a cup and added some milk. We let the cereal soak in milk for a bit and then I began feeding Jayson.  His first taste was not even 1/2 a teaspoon. I just put the chocolate flavored milk with bits of the cereal in his mouth and he just savored it.  I could only imagine how satisfying this first taste of food was after almost 3 weeks of not physically eating. I asked him if it was hurting when he swallowed and he shook his head. I gave him a few more 1/2 teaspoons and he was done. Soon after that, he asked for orange juice.  One of his nurses got him a small carton and she diluted it with some water.  He sipped the juice through a straw and I could tell from his face how satisfying that first sip was. After a few more sips, he was done.

About an hour later, he started to say something again, but we couldn't make out what he was trying to say. So, I asked him if he could write what he wanted and he nodded.  I grabbed a small white board that was given to us and I placed a marker on his right hand.  I told him to draw or write what he wanted as I held on to the small board.  He was drawing a semi-circle and next to it were some lines.  My mother-in-law and I just started guessing.  Is your lung hurting? Do you have to poop? Each time he shook his head. It was like playing the Pictionary game. Finally, he began forming letters. Here's what he wrote:

We gave him a few sips of orange juice again and he was satisfied.

Jayson slept soundly through most of the night. He had his BiPap mask on throughout the night. His urine output was very good and his breathing seemed to have improved.  Henry & his mom watched him overnight while I slept with Keilani in the room next door.  My dad took over for about an hour around 5:00 in the morning. Jayson was given a chest x-ray about 7:30 and when I compared today's x-ray with yesterday's, I could see there was an improvement. Today's x-ray looked better, but there was still a large area that was hazy white in both lungs.

Right now, Jayson's sleeping comfortably. He did wake up a few times this morning to drink apple juice, but would quickly go back to sleep. His breathing is less laborious and his fever has gone down to 99.7 as of 8:00 this morning. I'm praying that he will continue to improve today. Please join me in that prayer. God bless you all.

Another Tough Day

The Wi-Fi connection here at the hospital was again down last night until early this morning.

(Friday, Sept. 27th, 6:30 p.m.) It’s been another tough day.  My brother, Jerry, watched Jayson from about 10 p.m. to 4 a.m. Friday morning while I slept in the next room. Henry accompanied his mom and Keilani at the Fisher House. Jerry told me that during the night, Jayson seemed to have harder time breathing.  He also told me that Jayson said that he was tired. The respiratory therapist replaced the vapotherm with the Bipap mask.  Jerry encouraged him to go to sleep and rest.  My sister, Jannette, arrived soon after Jerry left and watched Jayson for an hour or so along with Henry. 

At about 5:30 in the morning, Jayson was a given a chest x-ray.  At 9:00 a.m., Jayson was taken to get a PET scan as recommended by his infectious disease doctor. His ID doctor was trying to determine the cause of Jayson’s fever which has been going on for about 5 days. The new antibiotics that he was given earlier in the week don’t seem to be helping.  Jayson was transported to PET scan with his entourage of doctors, nurses, respiratory therapist and me.  The actual procedure was only about 20 minutes, but setting Jayson up on the machine and getting him stabile took some time with all the IV meds/fluids he was receiving along with the BiPap machine.  I stayed in the waiting room and one of the nurses kept me updated on what was being done.

After Jayson was done with PET scan, I left for a few hours to run some errands.  I told Jayson I was leaving and would be back a few hours later. This was the first time I have left the hospital premises since Jayson was admitted on Sept. 8^th. It was good to get out of the hospital for a few hours.

When I returned, my husband told me that Jayson was looking for me.  Jayson was sleeping and I noticed that he was breathing differently from the previous days.  I was told that the x-ray from that morning showed Jayson had more fluids in his lungs once again.  This explained why he was having tougher time breathing.  

Jayson’s ICU doctor came in the room to share the initial findings from the PET scan.  He said that there were no obvious significant differences when they compared this PET scan with the one that was done on Sept. 9^th.  There was no obvious solid infection that can be seen on the scan.  The radiologist was in the process of looking at each of the more detailed slides and comparing it to the previous ones. We still haven’t received his final report.

After the ICU doctor left the room, his respiratory therapist and nurse said that while they were cleaning his mouth and struggling to breathe normally, he told them he was “tired” and it was “too much”.  According to them he had said these twice.  They weren’t exactly sure what he was referring to.  My mother-in-law was with Jayson most the time while I was gone.  She mentioned her own conversation with him and the similar words she heard. Of course, this made me very emotional.  I don’t know if this meant he was done and tired with the entire treatment and wanted to give up or if it was the specific cleaning or treatment he didn’t want to do. It’s difficult to see a family member so sick, tired and in pain, especially as the parent. Henry & I just stayed by Jayson’s bed-side until we had to attend the weekly meeting with Jayson’s medical team.

As in the previous meeting last week, Jayson’s ICU doctor first discussed Jayson’s current condition and the plan for the day and the days to follow.  He also showed us a picture of Jayson’s latest x-ray.  There was a large area that normally would show up on the x-ray as black, but was now hazy white. This indicated the presence of fluids. The goal was to remove the excess fluids once again using the same medication as before when we did the “Pee! Jayson! Pee!” campaign.

Jayson’s ICU doctor could not determine if this would work once again.  But he said it’s a tough balancing act.  When his blood counts are low, he needs to get blood products, which increase his fluid intake.  This can cause him to retain more fluids, as in this case. This is counteracted by giving Jayson medication to help him pee, but if he pees too much, this can affect his blood pressure and he would need to be given more fluid.  It’s just a cycle that will continue until his bone marrow begins producing its own blood.  That’s estimated to be about another 2-3 weeks. The plan is to try to stay ahead and the hope that Jayson’s body will continue to respond positively.

During this meeting, we had to once again decide on what our goals were for Jayson.  Last week, our goal was to be able to get the breathing tube removed and be able to interact with Jayson.  We were able to achieve these goals.  This week, the goals are to get rid of the fever he’s had, find the cause of the fever, if possible, and improve Jayson’s respiratory system. 

After talking about Jayson’s current condition, his ICU doctor once again had to give us possible worst case scenarios.  This part is always hard to deal with and this is when we tend to get very emotional.  His doctor asked that if Jayson continues to have a hard time breathing on his own, would we want to re-intubate him again? Both Henry & I agreed that we wouldn’t want to put Jayson through that again.  One of his nurses added that Jayson did let her know that he didn’t want the breathing tube again. We find comfort in knowing that we all agreed to this.  We told his medical team, that if it was Jayson’s time to go and he no longer had the energy or will to fight, we would respect his decision.  Our wish is that if he goes, he goes peacefully, without pain and suffering.  We also told them that we knew the odds are against Jayson given all that he has going on, but we were not giving up.  We will continue to rely and trust in God and hope for His miracle.

New Prayer Request

Uncle Jerry here writing this post.  The family is at a crossroads and looking for answers.  My sister Jessie asked me to post today since the internet is currently down at the Naval Medical Center and she urgently wanted to blog for prayers for the family. 

I had the privilege to spend the night with Jayson.  I had made arrangements with my sister to come for the night and I insisted that I stay with Jayson while they get some rest.  I arrived at 10 p.m. from Rancho Cucamonga.  Jess, Kuya Jojo (Henry) and Keilani were watching TV and having dinner in the room next to Jayon.  Auntie Del (Adams) was quietly reading next to Jayson who was sleeping when I arrived.  They filled me in on what happened for the past days.  My last visit was on Tuesday during the extubation.

He is working so very hard for every breath, for every drink, for every movement.  His breathing is labored and struggles to communicate.  He is constantly thirsty and his thirst is never quenched.  He is constantly struggling to find a comfortable position but has a difficult time finding it.  He had a PET scan this morning and still running a fever.  They are currently trying to figure out why there is such difficulty breathing.  After he drinks he will begin to cough and my heart breaks.  He struggles so mightily to cough out his phlegm and I see tears streaming down his face.  I have a difficult time seeing my nephew like this and I don't know how to help him.  I encourage him to cough, wipe away his tears and try to suction out the mucous in his mouth.  I turn away so he doesn't see me wipe away my tears.  We glance at each other and there is sadness in his eyes.  I ask him if he is tired and he nods his head.  This cycles continues and I am saddened.  I am saddened at the state of my nephew and at the decisions that the family will have to make very soon.  I prayed the rosary last night for the first time in a long time.

I ask him if he can handle this and he looks at me and nods yes.  Amazing is the strength and courage of this man, truly amazing!  All of the struggles that he goes through, all of the pain that he endures, all of the tears that he sheds and he has a confidence about him that says, "I can handle this."  There is another family meeting later  today and we are asking God to continue to guide Jess and Kuya Jo to make the right decisions no matter how difficult they may be.  I also would like to thank my amazing sister and brother-in-law for the work they have done to raise such a beautiful, courageous, tireless young man.  He is a true gift from God.  You are truly loved Jayson, but you know that already.  I would tell you that I am proud of you, but you know that as well.  I will just say that you have taught me so much more than you will every know and you will forever be a source of strength, pride and inspiration for our family.

Improving Every Day

Jayson's more alert and comfortable.

It was a peaceful and restful night for Jayson last night. My sister, Jannette, watched Jayson from about 11:00 p.m. to 3:00 a.m. while Henry & I slept in the room next door. Keilani was at the Fisher House with my mother-in-law and cousin, Natalie. At 3:00 a.m., Jannette, woke me up to help with Jayson.  She said he had slept most of the time, waking up only when the nurses had to examine him.  Henry wasn't feeling well late yesterday evening and so I just let him sleep the entire night.  I stayed with Jayson until the nurses of the morning shift came in.  Jayson was asleep most of the early morning

Jayson had a chest X-ray this morning. According to one of his doctor, it looks like he may have a little more fluids in his lungs, but other than that, this x-ray was about the same as his last one. He has been given some medication to help him pee more to help reduce the extra fluid in  his body. His face looks a little more swollen as before, but not much.

He is asking for food. Yesterday, he asked for fruit loops. This morning, he wanted fruity pebbles and milk. It was hard to tell him couldn't eat solid food yet but I told him I will write it on the white board and as soon as we get the okay from his doctors, we will get him the food he wants to eat.

Bat Girl watches over Jayson.

We are seeing some improvements with Jayson once again. He was put on a recliner a few hours this morning and was able to take a few steps on his own with the help of two nurses holding him.  He's now able to sip water from a straw, whereas before he was squeezing a small rectangular sponge attached to a stick (almost like a See's Candies lollipop). We would dip the sponge in a cup of sterilized water and put it in his mouth.  He then squeezes the sponge in his mouth to get the water.  For the past 2 days we had to hold it for him then earlier this morning, he held the stick himself for more control.  Now, he is holding the straw and sipping the water through it.  Earlier this morning, while sitting in the recliner, I heard the words I've been waiting for..."my lap top". He wanted his lap top, so I had his brother, Justin, set it up for him so that it'll be ready when he's ready to use it. Jayson is making progress.  They may be baby steps, but they are steps going in the right direction.

Right now, I'm sitting in the room next to Jayson typing this post for our blog.  I can see Jayson through the doorway.  He's relaxed and comfortable on a recliner.  He was just given a full body bath and one of his nurses said that she got a smile out of him when she was massaging his face and head. His skin has been peeling off this past week. It's a result of his skin being stretched out when he was swollen then quickly shrinking back. So, the nurses also moisturized his skin. By the looks of it, Jayson enjoyed his spa day. However, he missed seeing his special visitor while he was sleeping.

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.\

New Visitation Rules

I got done meeting with Jayson's doctors and nurses when they did their rounds about an hour ago. Besides discussing Jayson's current condition, we discussed changes that need to be made immediately regarding visitations. As of right now, we will not be able to accept any visits from many family and friends. Only Jayson's immediate family members (parents, siblings, grandparents) will be allowed to come and see Jayson.  The only other exceptions are adults who will be relieving Henry & I to watch over Jayson. However, no one who has a cough or is sick are allowed to visit. We all want to do whatever we can to help Jayson and protect him. His immune system is completely not working since his bone marrow is not making any white blood cells. So, he has no way of protecting himself from infections. The doctors and nurses are doing everything they can to help Jayson. And we, as his parents, want to do our part in giving Jayson the best chances of getting through this hospital stay. I'm sure everyone will understand and will abide by these changes.

I know many want to visit and see him, but it's best not to do so at this time. We appreciate everyone's concerns and support. If the situation changes, we will let you know. Please continue to pray instead and spend that time with your own family. Cherish each moment you have with them. God bless you all.

Jesus Walks With Jayson

It was a long day for Jayson, yesterday (Sept 24). In the morning, the nurses prepared him for the extubation making sure they completed the platelet infusion and pre-medications were given.  At about 8:20 a.m. the Propofol medication was turned off and we waited for Jayson to wake up.  After about 30 minutes, he began to come out of sedation.  He was moving his extremities more and opening his eyes.  He slowly became more responsive by answering questions and acknowledging what we were telling him.

As the doctors and nurses gathered together and prepared all the machines, tools and supplies needed for the extubation, a few family members spoke to Jayson. He heard from his Grandma Del (Henry's mom), Grandpa (my dad), Auntie Lisa (Henry's sister) and Uncle Jerry (my brother).  Each one of them encouraged him, prayed for him and expressed their love. My brother told him to conserve his energy because was going to need it when they begin. When the procedure began, Jayson was surrounded by a team of doctors and nurses along with me, Henry and Jerry. The other family members were in the room next to us watching through the window. We were saying our prayers and encouraging Jayson throughout the procedure. The actual removal of the breathing tube only took a minute or two and Jayson was able to breathe on his own right away.  We let out cheers and praises when Jayson was breathing without the help of the machine. It is one of the most joyful and emotional moment for us. We quickly shared the great news to many of our family and friends.  We celebrated that victory and praised God for once again helping Jayson.

A BiPap mask was quickly put over his nose to help him breathe if he needed it.  It will be on for about 24 hours and after his doctor's examination, he will decide if Jayson still needs to use the mask.

Jayson was alert the entire day and there were still issues that he had to deal with.  He still had the mucositis in his mouth that was uncomfortable and painful.  He was accumulating fluid in his mouth because he couldn't swallow.  His throat was very sore from having the breathing tube in it for 2 weeks.  The nurses had to suction out the fluids from his mouth frequently and this irritated Jayson a bit.  The nurses continued oral hygiene most of the day.  As the day progress, he began to swallow little by little.  The fluids didn't accumulate in his mouth much and he required less suctioning. As of right now, his mouth is slowly getting better.  Although, it make take a week or two for the mucositis to be completely gone.

Jayson is still running a fever and is given Tylenol about every 4 hours. His temperature is ranging from 99.9 to 102.2 for most of the time. 

Jayson was very restless, frustrated and agitated most of the day and night. He would try to speak to us, but the accumulation of fluid in his mouth made it very difficult to understand him, especially soon after the extubation.  As the day went on, he continued to try to communicate with us with words. But no matter how much we tried to listen, we just couldn't understand what he wanted. So, we guessed and went through a list of possibilities asking if he was in pain, uncomfortable, itchy, etc. Most of the time he would shake or nod his head or raise his eyebrows to answer.  But there also times when he gave us no response. This was very frustrating for us, but even more for Jayson.

Jayson was very restless at times.  Each time he was re-positioned in bed, he would squirm around until he found a comfortable position.  He was also raising his right hand up as if to reach for something above him. He would also move and lift his legs and feet. We thought he was annoyed by the boots on his feet that is used to prevent foot drop condition. His doctor says that this restlessness can be due to the effects of being under sedation for so long or he could be going through a level of withdrawals from the medications he was given.

During the late evening while I sat at his bedside, he was still trying to speak.  He was raising his right hand upward and looking up as he tried to talk to me. I leaned my ear above his mouth to try to listen to what he was trying to say.  Finally, I was able to hear a few words.  I thought I heard him say "I see Jesus".  I was astonished and wasn't completely sure I heard correctly.  So, I asked him "Did you say you see Jesus?" and he nodded.  I then told him, "Don't be afraid.  Jesus has been with you all along. Just tell him 'thank you' for helping you." I have goose bumps right now as I share this with you. I told this to my dad who was standing at the doorway of Jayson's room.  He quickly shared this with our family members sitting in the room next door.

Later that evening when one of his doctors came by, I asked him if any of the many medications he was given can cause him to hallucinate.  He didn't think so.  I don't know how to explain this, but I believe that Jesus did physically show himself to Jayson.

It's about 7:30 a.m. right now and Jayson is finally getting some sleep.  He's been sleeping peacefully for about an hour and half.  He was given an increasing amount of medications to help relax him and this has allowed him to sleep and rest.  Henry is also asleep in the other room.  He was watching over Jayson during the night while I went to sleep.  H

Henry was accompanied by our dear friend Luz who is from Murrieta.  She drives here with her 3 kids and sister to help us with Jayson almost every day.  Her family has been making great sacrifices to be here with us.  At one point during the first week Jayson was here, I expressed my concern that she and her children are getting tired of the drive, often coming late at night and leaving by 6 in the morning.  I told her that she didn't have to come down during the week because the kids are in school.  She said they wanted to be here for Jayson.  She also said that if Jayson can handle all that he's going through, they can handle these small sacrifices.  Luz and her family is just one example of the love and support our family has been blessed with.  We have seen the extent our family and friends are willing to through to provide us with food, comfort, relief and support.  There are no words perfect enough to express our deep gratitude. But what I do know is that we are experiencing first had God's love for us.  

We praise you Lord Jesus!  All glory and honor goes to you God for all the miracles we are seeing with Jayson. We hope that Jayson's story is transforming unbelievers to believers and deepening the faith of those who already believe.  Thank you God for all you have done and for all that you still will do for us.  Amen!

Jayson's Breathing On His Own!

Praise God! The extubation was a success.  He was off the ventilator and the breathing tube was removed. He is breathing on his own and is awake and responding to us.  He is being cleaned up as I type this and many of our family is in the room next to him and had witness Jayson's victory. We all breathe a sigh of relief and praise God for all that He has done for Jayson. Jayson is resting and has a oxygen mask covering his nose. We will let him build up his strength and we look forward to when we see him smile and hear his voice.

Thank you for all your powerful prayers!  Our loving and merciful Father heard each one of us.  God bless you.

Extubation To Proceed

The nurses are currently preparing Jayson for extubation.  They are giving him his last platelet and will turn off the Propofol soon if they haven't already.  Extubation should be within the next hour or so.  Please pray for Jayson's successful extubation.

Lord, we lift Jayson up to you.  He is in the palm of your hands. Please continue to be with him, comfort him and strengthen him.  Please minimize any pain that he may feel. We will trust you with all our heart and will not rely on our own understanding.  Thank you Lord for all the blessings you've showered upon Jayson and our family.  We know we wouldn't have had the strength to get through these past 2 weeks without you. Please pour your mercy, strength and love on Jayson.  He needs you. Amen.

Preparing for Tomorrow

Jayson has a new ICU doctor today, Dr. Kon, who we met when he did rounds this morning.  After evaluating Jayson's condition and reviewing what precautionary steps they wanted to do before attempting extubation, the decision to postpone the procedure for another day was made.

Dr. Kon wanted an ENT physician to check out Jayson's respiratory system for any signs of bleeding or other issues that can be a potential problem.  A consult order was submitted to the ENT department and an examination was done about 3:30 this afternoon.  A scope with a camera on the tip was inserted in Jayson's breathing tube.  The camera went down his throat to the tubes leading to the entries to his lungs and all the doctors were able to view it on the monitor.  According to the Chief ENT physician, there were no signs of bleeding or clots.  He didn't see anything that could be a potential problem.  His recommendation was to transfuse Jayson with plasma and platelets to get his platelet count up and help improve his body's ability to form clots.
 
Henry & I just spoke to Dr. Kon about an hour ago.  He reviewed the ENT's doctor's evaluation and went over his own plan for Jayson.  His goal is to give Jayson the best chances of getting extubated successfully. He wants Jayson to be as alert as possible when the procedure begins.  This may require giving Jayson less pain medication.

He's already replaced the two sedation medication Jayson with another one called Propofol. This medication doesn't have the withdrawal effects as the other two. Another benefit of this medication is that once it's turned off, it's gone from his system within 15 minutes, whereas, the other two can take days.

Jayson will be given plasma and platelets transfusion early morning as recommended by the ENT doctor.  At about 8 a.m., he will be given two other medications for pain and to keep from getting withdrawals.  The Propofol will be turned off and we'll wait for Jayson to wake up. Once he's awake, the tube will be removed.  Jayson's nurses and doctors are optimistic about tomorrow's procedure.  I know they are taking additional precautions to ensure the extubation will be successful.

We will continue to pray and rely on God's mercy and love in preparation for tomorrow.  Thank you once again for all your prayers and support.

Extubation is Postponed

Jayson's isn't quite ready yet, so extubation is postponed for tomorrow instead.  I will provide more details later today.

Waiting For Decision

According to one of his doctors, Jayson's lungs sounded coarse yesterday evening.  He said there seems to be some liquid retention in his right lung.  Jayson was therefore given medication to help his body remove the excess fluid. Another chest x-ray was done this morning around 5:00 a.m. to see if his lungs had improved. We are waiting to hear the findings.

Fever was at 100.5 at 5:30 this morning. This has been the lowest temperature during the last 48 hours. According to the nurse, his fever just went up to 102.5 at night compared to 103.3 the night before.  So, we hope that this is an indication that he's starting to improve and his temperature will stop being an issue.

Jayson once again is showing us he's tired of lying in bed.  He was attempting to move his legs more to the point of removing one of his boots off his feet.  He was restrained by Henry and the nurses and was temporary given a little more sedation to relax him.  Henry told him to conserve his energy and I assured him he'll be out of the bed when he's body is ready.  Before he was completely sedated, I asked him if he had a restful night and he just shook his head.

It's 9:25 a.m. (Sept 23rd). His nurse is suctioning out more fluids from his lungs. We are waiting for his doctor to do his rounds so we can find out if we are going to proceed with extubation.  We will let you know once we find out and we'll ask for your prayers.

Gifts and Blessings

Blessed to be together

Jayson had a quiet and restful night, so different from the previous night.  He's been resting most of the day with the help of his sedation medications. He's still waking up and responding to some of his visitors, but not as often as he did on Friday.  One of those visitors is his close friend, Ester, from Westview High School. He opened his eyes as she talked to him and he also shed some tears according to her. We are very happy to see him continue to be responsive to us.

The plan today was to continue managing his fever which is on day four.  He hasn't broken through his fever yet which has ranged from 100.5 to 103.3. His new internist, Dr. Zabrowski, said that his fever is not a major factor in determining whether to extubate Jayson or not tomorrow. However, he is no longer shivering and so the nurses removed the Bair Hugger machine that was used yesterday. They are slowly weaning him off one of the sedation medications, replacing it with another medication that is less likely to cause withdrawals.

Early yesterday, signs of oral mucositis developed in his mouth.  This is a painful inflammation and ulceration of the mucous membranes often a common complication of cancer treatment.  The nurses have been treating the mucositis with mouth rinse and antibiotic ointment.  Oral hygiene is done every few hours and his mouth is starting to heal.

Jayson's new boots

Some improvement has been made today. For most of the day, his blood pressure has been within the parameters his doctor set. His urine output is also in the goal range and there have been improvements in his breathing capabilities.  The nurses aren't suctioning out as much fluids from his lungs as before and the fluids that is being pulled out has fewer pieces of blood clots in it. So, hopefully this means there is less irritation in his respiratory system and no bleeding.

Keilani's creation

Jayson has been using the new boots to prevent foot drop.  He has them on most of the day and I said it looks like he's about to go skiing.  He's not the only one with new footwear from the hospital. Keilani modeled her creation called "Monkey Feet".

Today, we continue to be blessed with visits from family and friends.  Jayson's friend, Janessa, came by with her mom to see him.  She gave Jayson a bacon shaped pillow, bacon wallet and bacon Band-Aids.  Does this give you a hint of what Jayson enjoys eating for breakfast?  It's also the name of his stuffed toy pig.

Praise to God and Pray Over Jayson 

Aside from immediate family members from San Diego and Rancho Cucamonga, Jayson was visited by members of Couples For Christ (CFC) and Youth For Christ (YFC). They prayed over him and sang some of the group's popular worship songs. They were also joined by Brother Mike, a missionary visiting from Maryland.

Not everyone who talked to Jayson came to visit him personally.  His friend, Taryn, spoke to him over the phone and even sang him a song.  I could tell Jayson enjoyed listening to her because I could see his positive response to her voice.  He also listened to the audio recording of  "La Cucaracha" and "Itsy Bitsy Teenie Wheenie Yellow Polka Dot Bikini" played on the ukelele by his friend, William, of Hawaii. I know these simple gifts shared by family and friends are strengthening his drive to keep fighting.

Another gift that we're constantly receiving is food. One of my aunts had commented that she was surprised I hadn't lost weight despite all the stress that I have been experiencing these past 2 weeks.  I asked her "How can I lose weight when we have many love ones bringing food to us daily and reminding us to eat?"  They are not only feeding us, but also most of the PICU staff we've been sharing their gifts with.

We should find out in the morning by 9:00 a.m. if the procedure to extubate Jayson at 11:00 a.m. will proceed. We pray that his condition remains stable and that his respiratory system is strong enough for him to breathe on his own.  When he does, we will breathe a collective sigh of relief.

Thank you Lord for another blessed day with our son.

#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

 

A New Concern

Echo was done to check Jayson's heart.

A new day, a new concern.  I met once again with Dr. Eyzaguirre and the other staff members when he made his rounds this morning. There is some good news to report.  His sodium level is now in the normal range.  It went from 147 yesterday to 137 today. His kidney is functioning well. His blood pressure was stable throughout the night with very minimal medication needed to control it. Jayson's red blood cell and platelet levels are very good as well. He had received both platelets and plasma transfusions during the night. He is also receiving some nutrition through the IV every few days. He had an echo at 3 p.m. and the cardiologist says that his hearts looks good. Thank you God for your healing touch!


Since the paralytic medication was stopped, Jayson has been able to open his eyes more frequently.  He's able to lift both of his legs and arms. He's even lifting his head and trying to get up. After explaining to him that his body was not yet ready for him to get up, he would slowly settle back down. He's been able to guide my hand to areas that itch, mostly his upper body or thighs. He's more responsive; obeying simple commands and answering our questions by nodding or shaking his head and raising his eyebrows.

He is recognizing faces.  When I tell him to look at me he rotates his head to face me.  When I asked him to look at Keilani, he searches for her with his eyes, then rotates his head towards her.  All these little improvements are each a miracle from God.  We know that He is with Jayson from the very beginning.  For this, we glorify and praise Him.

I wish it was all good news, but it isn't.  Jayson continues to run a fever.  It reached 102.9 last night and he's been given Tylenol every few hours. At this time it has gone down to 101.3. He sometimes shivers when he has a high temperature. So, to help with this, the nurses are using a Bair Hugger machine that's attached to a plastic blanket. This blanket has channel that fills up with air. The nurse can set the machine up to cool or warm the patient as needed.

Jayson is still neutropenic, meaning he's very susceptible to getting an infection.  He will most likely be neutropenic for the next 4-6 weeks since his bone marrow is not producing the white blood cells needed to fight off infections. Therefore, we continue to require everyone who enters his room to wear a mask and sanitize their hands before coming in.

Dr. Keilani complies with visitation policy.

The main concern today is the solid in his lung that was noted yesterday in the CT scan of his chest. According to his internist, this organized disease is most likely pneumonia.  Jayson has already been given 3 different antibiotics since he was admitted. Per the infectious disease doctor, these are the 3 best antibiotics available.  He has asked the respiratory therapist to get samples from his lungs for evaluation. They will do blood test for tuberculosis (TB) and fungus cocci (valley fever). Additional cultures will be done to check for bacterial growth which takes a minimum of 5 days to develop. This possible pneumonia can be a factor in determining whether to proceed with extubation on Monday.

Jayson had another chest x-ray this morning and it shows there is still some fluid in his left lung.  The respiratory therapists continue to suction out fluids from his lungs, mouth and nasal cavity. So, far it looks like most of the secretions they're getting out are pieces of old blood clots.

Per Dr. Eyzaguirre, if he remains in this current status and his oxygen and carbon dioxide levels are good, they will proceed with the extubation procedure.

"My Famle" by Keilani

These past few weeks have been very difficult for our family, but with the support of our large extended family, friends, co-workers and hospital staff we've been able to get through each procedure, each test and each day.  Many people continue to visit Jayson. In fact, just this afternoon one of Henry's co-workers came by to tell us that we are not alone. All of Henry's co-workers at Solar Turbines are praying for Jayson and our family. Henry & I have never felt that we were ever alone in Jayson's battle with cancer.  Our family and friends have always been there for us. All our needs have been met. We continue to count our blessings and express our thanksgivings for each day we wake up with Jayson still with us. Each day is a gift that we will always cherish and be grateful for.

Keilani watches over her big brother.

Even our youngest daughter, Keilani (6), who often squabbled with Jayson or got on his nerves, has been treasuring her time with him. She spent the night here at the hospital with us and a few other family and friends. She didn't go to school today, but she put in her 10-minute shift sitting at her older brother's bedside holding his hand.

She was also inspired to draw our family picture on one of the whiteboards in the hospital room.  Unfortunately, the whiteboard was not large enough to show all of our family members.

As we have in the past, we continue to be thankful for all your prayers and support. God bless you always.

What Lies Ahead

At 1:30 this afternoon (Thurs, Sept. 19th), we had a meeting with Jayson's doctors and nurses to discuss his condition and plans for the next few days.  In the meeting were Henry & I, my brother Jerry, Uncle Noel Rivera (Deacon and family friend), Dr. McManaman (Jay's oncologist), Dr. Eyzaguirre (Jay's Internist), Jason (charge nurse), Heather (social worker) and Denise (nurse).  Dr. Eyzaguirre reviewed what's happened the last 12 days that he's been in the hospital.  He went over his current condition and also went over the unsuccessful first attempt in extubation (removal of breathing tube) this past Monday.  He described the unexpected clot obstruction that came up during the procedure and their plan to prevent it from happening again.  For now, they will attempt another extubation on Monday (Sept. 23) morning.  Please pray that it will be successful this time around.

During this meeting, Dr. Eyzaguirre shared the result of the CT scan from this morning.  There is no evidence of hemorrhaging. The one area that had increased in size in scan #2 looks like it's remained the same or even shrunk a little.  During this CT scan, his oncologist requested a scan of his upper body.  The result of this shows there is some type of solid in the bottom of his lungs. They are not sure what it is. One possibility is that it is an infection, but whatever it is, it can be a potential problem.

His oncologist, Dr. McManaman, reported that based on the tests that were done, his Acute Myeloid Leukemia (AML) is due to the chemotherapy treatment he received for the Aveolar Rhabdomyosarcoma cancer. The chemotherapy drug transformed his normal cells to abnormal cells.  He is completing the first round of treatment for the AML.  It will take about a month to recover from this treatment for a person who only has AML. Since Jayson has Rhabdomyosarcoma also, it may take longer than that. According to Dr. McManaman, the goal for the AML treatment is to get him into remission, but not to cure him. She wanted to emphasize that to make sure Henry and I understood what lies ahead.  She also made it clear that if this first round of chemo is successful and he goes into remission, there is still the original cancer to be dealt with. They are unable to treat both cancer at the same time because his body will not be able to tolerate all the drugs in his system.

The bottom line is, Jayson has an uphill battle, the odds are against him.  He could be transfusion dependent for the rest of his life. He will most likely be in the hospital most of the time.  We would be very fortunate if he was well enough to go home once again.

All of this information was overwhelming and emotionally hard to take. We are still trying to comprehend and accept all that we were told. But we will remain hopeful and trust that the Lord will do what is best for Jayson.  We pray that Henry & I will make the right decision when the time comes and will be at peace with that decision.  For now, I pray that we get another opportunity to talk to Jayson, to see him smile at us, play his guitar, play video games with his friends, give gaming tips to his cousins and bond with his siblings. More importantly, we want to have the opportunity to show him how much we love him and to tell him how proud we are of his courage, strength and his determination to live.

I'll end this post by sharing today's scripture:

"Even though I walk through the darkest valley, 

I will fear no evil, for you are with me, 

your rod and your staff, they comfort me." 

(Psalm 23:4, NIV)

Encouraging

With Auntie Marcy

Every morning around 9 a.m., doctors make their rounds and when it's time for them to discuss Jayson; I usually join them along with 1-2 or family members or friends who are around. Today I was joined by my dear friend, Marcela, who was my classmate from middle through high school.  

As we discussed Jayson's status at the entrance way to his room, we noticed some movement from Jayson.  He was lifting his left hand and reaching across to his right abdomen and began scratching his side.  His nurse went to the right side of his bed as he opened his eyes.  She asked him if he was feeling any pain and he shook his head. He was attempting to lift his right arm while the nurse was trying to calm him down. Marcela, who was standing next to the nurse reached over and held his right hand and kept it down.  Meanwhile I stood on the left side of his bed with a hand on his forehead encouraging him to relax. I also told him he was doing a great job and we're all waiting for him to wake up, but it was not time yet.  I told him it would be a few days until they take his breathing tube out. The nurse increased the dosage of a medication to help him relax and soon after that he closed his eyes and has been restful since. 

Our meeting at the doorway resumed and they reviewed the care that was done the last 24 hours and the plan for the day.  The word that came to mind during the meeting was "encouraging".

His sodium level was one of the concerns yesterday.  That number has decreased from 158 yesterday morning to 147 today.  His doctor said that the safe range is 145-147.  The increase in free fluids (no salt in fluid) they gave him along with the medication to help him urinate more has helped bring his sodium level down.  However, the increase in the fluids has a resulted in a positive 4 liters more fluid in his body.  He is retaining more fluids and we see evidence of that in his fingers.  They are more swollen than they were just last night.

Jayson is opening his eyes more frequently and is more responsive!  Thank you Lord! When his respiratory nurse was suctioning out some fluids in his mouth, he was grinding his teeth a bit and was biting the suction catheter.  She told him not to bite on it and he immediately stopped.

Right now his blood pressure is still elevated and his systolic number is fluctuating in the 140s-160s. This along with his fever has been the focused of his nurses the last couple of days.  He's being given Tylenol regularly for his fever.  So far, there is no evidence of any infection.  His blood cultures to check for any bacterial growth have all been negative. There are still few recent cultures in the labs, but results are pending.  Jayson's also being given blood products, (red blood cells and platelets) when his counts are down.  His doctors and nurses are doing an excellent job in managing his care. 

One additional thing I wanted to let you know is that his normal skin color is slowly coming back. He still looks like he spent some significant time in a tanning booth, but the center part of his face is a lighter color than the perimeter.  

For today, he is scheduled to get another CT scan at 11 a.m.  His doctor wants to have a more recent picture of his brain to see if there are any changes. We have a meeting at 1:30 p.m. with his team of doctors, nurses and social worker to discuss plans for the next couple of days.  His extubation is scheduled for Monday. So during the meeting the doctors will review the plan and discuss the possible scenarios during the procedure. His doctor is optimistic and doesn't believe we will have the same problem as the last attempt.  His respiratory therapists have been suctioning any fluid buildup regularly and there's no evidence of any internal bleeding in his mouth, nose and throat.  

As I finish this post, Jayson's nurses are preparing him for his CT scan.  They will be leaving shortly.  

Our eldest daughter, Kristen, brought some of Jayson's school pictures the other day and I hung a few of them in his room.  Jayson's been in the hospital for about 12 days and in PICU for 11 of those days. He's been sedated for 9 days now and most of those who've been taking care of him have never seen Jayson smile or heard him speak. With these pictures, they can now see his smile and early next week I pray that they will hear his voice.

Comfortable and Peaceful

God is with Jayson

One of Jayson's doctor who has been managing his care just came by to examine him.  He spent some time with me to explain Jayson's current status and the plan for the day.

Jayson's kidneys continue to improve and he's making excellent urine output (he's peeing a lot). However, his blood pressure continues to fluctuate and his nurses were managing it throughout the night by adjusting his medications accordingly. A minor concern right now is the level of sodium in his body. This can be one of the reasons why his blood pressure was increasing.  They will give him a medication to help his kidney flush out the excess sodium from his system.  It will take a few days for his body to reduce the sodium level to an acceptable level. This medication couldn't be use a few days ago because his kidneys weren't functioning properly.

Extubation (removal of breathing tube) was planned for this coming Friday, Sept. 20, but now it's been pushed to Monday, Sept. 23rd. His doctor wants to give his body time to improve even more, to reduce his sodium level and strengthen his lungs.  He wants to give Jayson the best chance of a successful extubation.

Tree of Life

Jayson continues to have a fever.  It went up to 103.1 early this morning, but is currently gone down to 101.1.

Jayson opened his eyes again for a few minutes this morning as his dad and I stood at his bedside. We were told that too much stimulation can increase his blood pressure so we've restrained from talking to him or touching him too much.  It's difficult for us to not talk to him or touch him, but we know we must for Jayson's well-being.  So, we sit near his bed and just pray for God's healing touch.

Yesterday, Jayson was transferred to a  new bed yesterday. He was moved to an air bed which will help prevent bed sores. The mattress is lined with channels and air can be added or removed from these channels as needed.  Now, he can be automatically rolled to one side or the other.  Prior to this they had a few nurses rotating him manually.

As I write this post, sitting near his bed on my makeshift desk, typing away on my laptop, I glance at the monitor showing his vitals signs.  They are all looking good. His blood pressure is now in the 120s/60s. Jayson looks very comfortable and peaceful.