Aid Pharoah’s journey to recover his health and happiness

Family, friends, and surrounding community far and wide, as many of you know, we recently suffered one of the most traumatic experiences. As said by Legacy Emanuel surgeons, “This is one of the most difficult and confusing cases, and to survive was nothing short of miraculous.” And here’s how it started in Pharoah’s words:

After a full day of pain due to an impacted tooth while taking over-the-counter medication with no relief and mechanical issues with our car, we made it to the hospital. After 10 hours of blood tests, imaging, and a CAT scan, they finally showed an unknown obstruction in the neck region. An ambulance was then called to transport us an hour away to Legacy Emanuel Children’s Hospital in Portland, Oregon, it being a higher-skilled hospital and the unknown obstruction jeopardizing my airway. Upon arriving and awaiting the surgeon team to assess my situation, on day two, my oxygen levels dropped dangerously low, requiring intubation because my breathing was labored, and I began to drown in my own fluid. “This now represents life-threatening disease, AT RISK for evolving bacterial sepsis, and the teen patient will benefit from transfer from WARD to PICU as well as ongoing Peds ENT consultation and new Cardiothoracic Surgery consultation for surgical debridement/drainage of suppurative disease.” This was pulled from my chart two days after admission, coming from Dr. Mato, the infectious disease doctor. That was the last memory Pharoah can recall before being intubated in the PICU. I’ve been a medical lab assistant/phlebotomist for 27 years, comfortably collecting samples on traumas in the ER and ICU, yet nothing could have prepared me when Pharoah had to be emergency intubated. Pharoah’s father, brother, aunt, and I were with him, attempting to comfort and calm him, speaking to him with our hands on him as I was on my knees, hands on my child, and I’ve never prayed so hard as I did in those moments as it took three attempts to get a clear airway and intubate with his O2 dropping below 40% and his face purple and lifeless before the multiple teams and one very skilled anesthesiologist in particular were able to stabilize him.

The following morning, I awoke to the sound of three nurses wearing yellow protective gowns working on Pharoah, changing and cleaning all kinds of IV fluids, changing bedding, and what stood out most was how they spoke to Pharoah as if he was awake and conversing. I got up to look even. It was so loving and careful. He was not conscious. This scene reminded me of the lovely ladies that tend to Jesus at the tomb. A few hours later, as a family, we were walking with Pharoah down to surgery, and I saw him (mind you, still unconscious) snap his fingers. I became so excited I couldn’t stop stuttering, trying to get the words out. We all prayed and waited for Pharoah. Shortly after surgery, he was recovering in his room when he awoke while intubated. He was given a dry erase board after trying to communicate through text on his phone. Pharoah’s first communication was in his true form: selfless. He asked his brother if his nephew Finley was okay. He just recently admitted to feeling that he would not leave the hospital alive at this stage. Just the second day of 62 very long, hard-fought days that Pharoah courageously, consciously awake, and very aware of what was at stake. As a mother, I barely think of this thought of him feeling and knowing this possibility tears my chest open. Pharoah did not say one word about being uncomfortable or being intubated at all. Not when waking up, not ever, except for in that moment he made hilarious jokes, poking fun at his own groggy state of mind and how, as he said, “Of course the RN would be the one to remove the tube when it’s time. Duh, what was I thinking.” Pharoah never cried. Pharoah never said, “Why me?” Pharoah did assist every day by being awake and performing his own suctioning all throughout being intubated. At a six-week time period with many setbacks, while conversing with the infectious disease doctor Mato, she stated to Pharoah, holding his hand and smiling, “I want to see you better because I want to know who you are, because in the face of disease, sir, you are a gentleman.” And as a mother, I will never have a compliment that could surpass that, and nothing else could make me more proud.

We've all been so lucky to have Pharoah in our life, and none of us ever thought we would be in that position, waiting day by day to see how to make it here and seeing just how he can recover. We've had tremendous support from friends, family, community, and all of the amazing health care staff throughout this fully traumatic misfortune, and that support has meant so much to all of us. Pharoah has people praying for him and people with him most hours of the day.

In the coming months, we will be handling everything we have regarding his recovery from Mediastinitius, lung failure, pneumonia, systemic inflammation response syndrome which could include a myriad of different things. We know his medical bills will be astronomical during this process. We have found resources through Medicaid and other options, but everything is very unclear at this stage. We plan to do everything outlined to get Pharoah the best care available, in whatever areas he may need along his rehabilitation. This will likely be months at least, definitely years, and will continue to affect Pharoah his entire lifetime, now having a need for more comprehensive, consistent care. We want to try things such as focused workouts in the gym specific to areas of muscle loss and excessive scarring where the doctors and teams of surgeons and specialists had to make deep, long cuts made specifically along the scapula in order to debride, take the lungs and heart out, and clean off the infection physically while holding these organs, as explained by the surgeon who performed this life-saving procedure. Also, quarter-sized scars and widespread nerve pain up and down both sides of rib cages and at the base of the neck/throat (i.e., trachea) due to ports placed all throughout his body to drain the fluid that would build. This was a very complex process due to the branching of the lungs. The fluid had to be found by imaging over and over and then drained out through surgically placed ports in order for multiple antibiotics to be able to kill infections and reach all hiding pockets.

Anything we can do to help him now after he has fought so very hard for this life.

People have reached out asking how to help, and at first, we weren't sure what he would need. We're sort of all in a limbo state right now, but after trying so hard to take care of it all to no avail, I decided that it was best that we start a campaign for Pharoah for supplemental costs now. As we've all taken time off work and left new employment to spend time with him, especially in the next couple of days as we celebrate Pharoah on his very special 18th birthday. This money will be used to help along the way to provide all the care for Pharoah as outlined above, as well as for us to take needed time away from work, and to be able to afford to buy supplemental medicine recommended by his pediatrician. Pharoah’s older brother has been graciously carrying this weight since leaving the hospital. The medicines are needed for pain and also anxiety associated with the most often traumatic experiences that he endured while being in the PICU and intubated specifically. Senior pictures and all the costs associated with a senior high school graduate, such as a reliable vehicle for Pharoah, as he has repeatedly said he hopes to return to an afterschool job like how he worked when he became hospitalized. We would love for Pharoah not to have to have these worries when the time comes and any other gaps that we worry may be there after first paying for his delayed oral surgery that is now placing a risk of a similar scenario by not having been able to receive the procedure yet due to insurance not covering his surgeons that performed his prior surgeries and the oral surgeons that are covered having no availability despite working with a specialist within the insurance organization.

The goal number isn't specific. You know, we have no idea what we are looking at exactly. If we fall short or exceed the goal, we appreciate every bit that everyone has done. Every prayer, every message, every thought about Pharoah is important, and I can't wait for the day that we get to see him smile, relieved and no longer saddened by missing out on the things he was very much working towards with his resilient heart of gold. Even today, after all he has been through, the 62-day time period interrupted Pharoah’s education based on the fact that he was admitted into the hospital on April 14th and released on June 14th. Even with all the time he missed out of his junior year, Pharoah is still on track to graduate, only requiring 1.7 credits left and is superseding many of his peers. The sheer will he has to get back to normal is incredible, and we hope with this campaign we can do just that.