Kai finally finished his ICU bid and was “upgraded” to the hospital’s pediatric care unit. However, there were some post-surgery secondary effects (“secuelas” as we were told in Spanish”). Yes, he looked, felt and was doing a lot better than when he was in the ICU, but knowing what we knew about him, it was still difficult to see him deal with his new limitations. Little Buddy was not able to walk because of lack of strength and balance, he was not able to talk, he was not able to swallow and manage his own saliva, and on top of this he had a dash of frustration (a generous dash). But the thing that gave us a spark of joy was the fact that cognitively he was all there.

Doctors mentioned that it would take a lot therapy, time, and patience to help him recover and be as close to his old self as possible. “He may or may not be able to do this or that again, etc., ect.” That made no sense to me. “He’s going to be able to do ALL of those things again” is what I kept thinking and saying to myself. I just could not (and still cannot) imagine Little Buddy not running in the park and riding his bike (“No training wheels, training wheels are for babies” is what he always says)

ICU is an understatement for “INTENSIVE CARE UNIT”, not an abbreviation. After resection surgery doctors estimated 4 days in the unit, then out to a regular hospital room. However, they were off by about 11 or 12 or 30 or 50 days. I use these numbers because when you’re going through it you lose track of time/days and it feels like forever. One day seeing Little Buddy in ICU felt like 480 hours. I don’t want to dwell too much on the ICU situation, there were lots not-so-positive moments in there. At times it was very difficult to see the light at the end of the tunnel; it seem like we were taking one step forward and two steps back. The ICU doctors and nurses kept telling us that Kai is strong, he’s recovering pretty fast considering everything that he has been through. But we did not and could not see that, especially after all of the setbacks.

Positive Note: Kai is strong, and Kai is a fighter. Kai is a strong fighter, he doesn’t understand “limitations”; and that creates frustration. Those two things coupled drive him to never giving up.

On May 17, 2019, Kai had surgery done for the removal of the tumor found 4 days before. Surgery took about 6 or 7 or 8 or 20 or 48 hours. Yes, it seemed like an eternity. Friends and family came out to give their support, and for whatever the amount of hours surgery took, they stayed. For that we will forever be grateful.

Two days after surgery Little Buddy was recovering in the ICU, and this is where this moment was captured. Everyone around thought it was a tender and loving moment between father-and-son, but it wasn’t, not for me. Little buddy was uncomfortable, in-and-out because of sedatives and medications; and he was visibly bothered by pain. Here I was praying and begging for God to take away whatever pain or discomfort Little Buddy was feeling, and just pass it one to me. I wanted to be in his place, I wanted to be the one in pain, the one tubed-up and uncomfortable. That was my prayer that day. At one particular moment during my prayer Little Buddy grabbed the back of my head as if to confirm to me that he’s going to be alright.

In mid-April 2019, Kai was taken to the hospital complaining of neck pain. The ER doctor diagnosed him with stiff neck and recommended physical therapy. During this time, Kai also started to have what he described – with his limited communication skills due to Autism – as eye pain and watery eyes (which we now believe were headaches). He was taken to the eye doctor with no resultant diagnosis or treatment prescribed. After another 1.5 -2 weeks without much progress, and an incident of severe pain, he was rushed back to the same hospital. An MRI was ordered, and a mass was found…diagnosis: Posterior Fossa Tumor.

Kai was operated on within 2 days to install a shunt to release pressure from the brain fluid that had accumulated due to the blockage by the tumor. This picture was taken in the ICU 2 days after the shunt insertion surgery, and about two hours before the actual tumor resection.

At this particular moment, Little Buddy had already gone through a lot. The anesthesiologist had to take out his two front incisors when he was under because they were loose and could accidently be swallowed, he was experiencing some discomfort from the shunt surgery, and to make matters worse they had to insert a catheter because one of the pain medications was preventing him from urinating. In spite of all this, he had the strength and will to smile for a family selfie. – Kai – Strong, unbreakable (in Burmese)