Brotherly Love

“Sometimes being a brother is even better than being a superhero.”

Marc Brown

John Lee had the Cath Lab done this evening (May 23). It went well and and he is currently resting. When I saw him, about 10:30 PM, he was just waking up. All this means that they doctors did not get the results they were hoping for last night and we are looking at Wednesday, May 29 as the surgery date. Overall he’s looking well. We will be looking to hear from his doctors for a full report tomorrow. 

John Lee recovering from the Cath Lab

Henry woke up in great spirits this morning. He played with cars before we went downstairs for breakfast. He was looking forward to go to the ‘hose-pital’ to see the train and John Lee, in that order. He was not disappointed. Rady’s Hospital has a train, it was fun. Stanford took it up a notch or a few notches. The boy had a great time with it. 

We later met with the child life therapist. She had a teddy bear with lines to mimic John’s appearance. It was not a hit. We should have had planned for her to put lines on a car, which she said she had done before. Henry Gray was glad to meet his brother. On the way it the children welcome team at the hospital gave him a bunny for brother. Henry was happy to give it to his brother. When it was removed for brothers ‘giraffe warmer’ (bed), he made sure it was back in it. He talked about John Lee throughout the day.

Our little warrior

We glad he is taken by his brother. It is great to see, especially now. As rough as it may be, the family is close. As John Lee is fighting each day, it is great to see his big brother being part of it. 

Earlier in the day we talked about whether the three year old Henry will remember this season later. We are doing our part to document the times and experiences as much as possible in this blog and in pictures. 

The four of us together

Even in tough times we remain hopeful because of the love we see around us. The support we are receiving from our community is incredible. We are grateful to be blessed by you. 

Another Day at Stanford — One Day at a Time

“Be joyful in hope, patient in affliction, faithful in prayer.”

St. Paul

It has been raining a lot while here in Palo Alto. Everything is green or wet. It is also cold. It does not feel like we are still in California. I guess we are just not used to seeing this amount of rain.

Yesterday we walked to the mall, the greenly triggered Amy’s allergies. This morning she thought it better to stay away from the baby, just in case the tickle in her throat is something else.

So, morning I decided to walk to the hospital from the Ronald McDonald House so Amy had the car. My goal was to get in just in time to catch the doctors making their rounds. It is about half a mile walk—well, I was able to cut through the mall, probably shortened that walk. I also figured I might as well get familiar with this place. It is amazing what you may seen when you walk unlike driving.

When the doctors got to John Lee’s room they were happy with his numbers. Guess what? The better the numbers the longer the wait. His attending doctor told me that the Cath Lab is still on the table, but they are waiting for vein pressure numbers from San Diego. Their justification for a second Cath is the more information they have the better they will be able to do the procedure. 

The familiar scene of John Lee’s room

Tomorrow they are presenting John Lee’s case. The attending said the surgery will be, tentatively, a week from tomorrow. Tomorrow is a big day!

Beautiful colors in Palo Alto

Also, tomorrow Loren, Sue (Amy’s parents) and Henry will join us. Loren and Sue will head back to Temecula on Sunday. It will be great to have family around for a few days…and of course we are excited for the first born here. He missed today’s dinner. It was hosted by Stanford University Men’s Basketball Team. He would have enjoyed it (I know it!). 

We have also been deciding about the experience of being at the Ronald McDonald House. Since we both commuted to college, we think that is akin to dorm living. Look out for a post about the experience soon.

I think we will walk more. Hopefully the heat will turn up a few notches. The rain does bother me, I love the green and wet weather. It feels clean. 

Boring Days Are The Best Days

“This is the day which the Lord hath made; we will rejoice and be glad in it.”

– King David
Lobby at Lucile Packard Children’s Hospital

This past weekend we had to learn about routine. As much as we would like to race to recovery we are learning that things just do not work that way. There is a lot of wait time. 

Let me nerd out some. When learning about performance, especially in business, they teach us about value adding and non-value adding activities. Activities are viewed in terms of process time, inspection time, move time, queue time, and wait time. Of all of these activities the only one that adds value is process time. So we try to minimize all the non-value adding activities so the cycle is streamlined.  

Since the day John Lee was born we have been waiting, processing, inspecting, moving, and queuing. So have the people following his life and progress. He was born at Sharp Mary Birch, then moved to Rady’s. At Rady’s they inspected him, while we were queuing for housing. He was moved to Stanford, Palo Alto. We queued for housing at the Ronald McDonald house while John Lee was being inspected. Currently we are waiting for other processes 

Amy using colostrum for oral care

During this time, John Lee has been tapered off a lot of medications. He is awake a lot. It is great to see him move as opposed to when he was under paralytics. We have also been able to get few effects done. The nurse yesterday helps get foot prints of John Lee. Amy was ecstatic! We have also been able to administer oral cleansing using colostrum

His attending doctor told us the ‘boring days are the best’ because it means that there is not much commotion or activities. So we are learning to appreciate boring days.

Today was another mostly boring day. We rejoice in little things like he moved a lot. His eyes were open more and looking at us. He responded to us singing and reading to him. It is amazing how much joy he is bringing to us.

Look at those eyes

In the next few days John Lee is going to get a Cath Lab to map his blood vessels. The doctors will use that information to discuss plans going forward. We are expecting that they will make the decision on surgery this Wednesday. 

Boring days

We Are Ready For Henry Gray

Absence makes the heart grow fonder

– Francis Davison

Thoughtful little guy

Unlike Rady’s Children Hospital, Stanford allows children in the ICU as long as they are healthy. This is a huge change.

First, Henry has not met his brother yet. We don’t know how he would do meeting John Lee in the current circumstances, but we are excited for the them to meet nonetheless.

Second, we are hoping that Henry is included in all events of our little family, including tough times such as these. I believe that we can make memories out of everything situation. Maybe one day we will talk about them around a fire camp and if they ask, where was I? It will great to tell them, even better show them picture of them together. 

Henry Gray announcing his little brother

Some time next week Henry will be joining us. We miss him so much. We are excited to have him here with us. Our first born is fun and easy going. We believe he’s a good big brother. He gives the best hugs, he squeezes the love out of you while saying, “squeeze!”. His mom is missing his chitter-chatter, and snuggles. 

It is the little things. The may seem so little, but they are huge!

Stanford – Settling

There is nothing on this earth more to be prized than true friendship.”

 Thomas Aquinas

John Lee looks to be getting settled in the Stanford Children’s Hospital system. This morning his attending doctor told us that he did well last night. They are getting the results that they are looking to achieve. For now, we wait to hear from his attending doctor this afternoon.

Meanwhile, Amy and I checked into the Stanford Ronald McDonald House. We are grateful to have accommodations beyond what we expected. Our stay here is indefinite as it all depends on the care that John Lee will receive and the recovery thereof. 

My graduation is tomorrow. Obviously I will not be there. It is bitter-sweet. On one hand I completed my degree (finally), on the other I cannot walk. I have been looking forward to this moment for years. Last week I was hoping I could bring my two boys to see me walk. Somethings are more important than others, therefore John Lee’s health must take priority.

While we are at Stanford, we are admiring the streets and the surrounding features. We are thankful to live here, in this state, in this country. 

Stanford – The Lucile Packard Children’s Hospital

May 17, 2019

“For I do not seek to understand in order that I may believe, but I believe in order to understand. For this also I believe-that unless I believe I shall not understand.” 

– St. Anselm

John Lee was transferred to Lucile Packard Children’s Hospital at Stanford University. Amy and I arrived at the hospital soon after he did. They were settling him in when we arrived.

The attending doctor briefed us that they are transitioning him to the care at this hospital. It will be different from what he was getting at Rady’s Children Hospital. For instance, they are weaning him off the paralytics he was on. We were already able to observe some movement.

The NICU cardiologist spoke with us and mentioned that they may repeat most of the procedures that were performed at Rady’s to get a better sense of how to approach John Lee’s care, this may include the Cath Lab. The decision about how to approach the surgery will be made next Wednesday.

At Stanford, the leading cardiologist for John Lee’s condition is Dr Frank Hanley. Another Cardiologist who may be in involved is Dr Michael Ma. We told that Dr Hanley and his team at Lucile Packard performs similar procedures, to what John Lee is anticipated to have, at least four times a week. We are blessed to have the team here taking charge and care of our baby.

UPDATE: May 17, 2019 11:00 PM

They moved John Lee to the unit where he will have surgery. The main concern is that he is pumping too much blood to his lungs and not enough to the rest of his body. The current goal is to maintain his blood pressure and get him to Wednesday. Other options include intervention this weekend if necessary. Dr Hanley is available if called upon. For now they are running tests and watching him.

John Lee – Moving to Stanford University

You don’t have a soul. You are a Soul. You have a body.

C.S. Lewis

John Lee recovering for catheterizations lab procedure from the previous day

May 16, 2019

Since Tuesday morning the doctor have been talking about consulting with Stanford University about John Lee’s condition. Yesterday after conducting a catheterization lab procedure they determined that it is best to send him to a specialist at Stanford University. It was confirmed this morning. Updates will follow as soon as we have more information.

UPDATE: May 16, 2019: 4:00 PM

About an hour ago we learnt that John Lee will be flown to Stanford, scheduled, at 5:00 am tomorrow. The details are still fuzzy. Amy and I are waiting to know how much room there will be on the plane. Most likely one of us will be on the flight with John Lee.

UPDATE: May 16, 2019: 5:20 PM

We received vouchers to fly Amy, Henry, Sue (grandma), and I to San Jose. While typing this Amy confirmed that John Lee will be leaving Rady’s, San Diego, at 7 am on May 17. We will make arrangement to be there around the same time he arrive.

UPDATE: May 16, 2019: 8:35 PM

Amy and I are booked to fly to San Jose, CA. May 17 AM.

John Lee Kufa – The Baby is Here Two Weeks Early

May 8, 3:45 AM

Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning. James 1:17, KJV

“Oh! Gosh, I think my water broke! Honey, my water broke!”

This is my wife Amy waking me up early that morning. I had plans to wake up 4:00 am and study for final exam I had at 8:30 AM. I was up but for different, more important reason. I got out of bed and grabbed the ready hospital bag that was on the side of bed and headed to the car. Meanwhile Amy was calling the hospital to check if it was safe to drive to the hospital in San Diego when she was scheduled to deliver because of the condition of the pregnancy. We were given the go-ahead and we were walking through the hospital doors 45 minutes later. After she settled down I whipped out my phone and began to study. 

We found out that we are having another child August of 2018. The timing was almost perfect as I was to graduate University May of 2019. We felt it is great timing to expand our family. Our first born, Henry Gray would be almost three and a half by the time the new baby is here. 

December came and it was time for the 20 week pregnancy check. We arrived at the Doctor office and got an ultra-sound done. The doctor came and spoke with us and notified us that there looks to be an anomaly in the baby’s heart so we needed to be sent to a specialist for confirmation. A week later it was confirmed, our baby has a condition called Tetralogy of Fallot, with Pulmonary Atresia. When developing, his heart did not develop a pulmonary artery.

Back in the hospital, I whipped out my phone and began to study (technology. 

Two hours later I was on the road heading to school to take that final, which took about an hour.

That afternoon at 14:38 I watched my wife give birth to a baby boy, and I had the great pleasure of calling the sex (there is a video to prove it). We named him John Lee, John Lee Kufa. She held the baby for a little bit, but they had to take him away to make sure he was breath okay.

Since he was born we have been at the hospital. I have since taken three other finals, one last Saturday night and two today (between May 8 and 14). It’s been a challenge! 

On the night of May 14 we decided to go home to see Henry and bring him down to San Diego with us. I was relaxing and Amy came and told me that John was paralyzed. I told her I had to go to the hospital—I had to see my little dude (I hadn’t seen him since the morning).

I got to the hospital and they told me that they chemically paralyzed him because they had to put a breathing tube in him. This is a way to calm him down because he has been breathing too fast and burning too much calories.

Since he has been to the Cath Lab and they obtained good images of his heart. As of May 15 they are talking with the cardiac team Stanford University. He may be moved there for surgical procedures.

May 16: He is stable and we are still waiting to hear about surgical options.

So this is where we are…this is what has been going on. He is a Rady’s Children’s Hospital in San Diego.