My name is Khari. I am a wife, mother, caretaker, daughter, sister, and friend. I love my life. I have a hard, draining, exhausting, joyful life. I pray for strength and stamina and joy every day. I try to find laughter in the small things. Or I would cry. A lot. I love my family. I love being creative. I love being in fresh air and doing anything outside. I am scared of the dark, heights and the ocean. Here is a huge part of my life…

Henry starting vomiting at 2 months old. Since that time, we have been to (and turned away from) 3 different hospitals, until we found the support and diagnosing doctors that we have now at Mary Bridge Children’s in Tacoma. By the time we found his current care team, he was in such a fragile state, that it is a miracle he is still with us and that he didn’t have damage done to his body or mental health. Henry has a rare form of a Ketone Utilization Disorder (a metabolic disorder)- his body cannot process fats and protein properly. If he has too much fat/protein, his body produces too many ketones that he can’t process and make his blood toxic. He also has a sleep disorder similar to seizures, but they are tiny movements and make it impossible without medication to sleep in a healthy way throughout the night. Which in turn makes his ketone disorder worse. We are in the process of diagnosing a Mitochondrial Disorder. Meaning, the energy producing part of the cells in his body are not making energy efficiently. This may explain why he gets his many other symptoms (lethargy, very little energy – if he runs too much he starts vomiting, extremely dark circles under his eyes, upset/painful stomach, gagging, irritation, extreme sweating, high fevers). Once these symptoms start to appear (which is at least once a day), we have to know exactly what he needs (rest, meds, IV fluids, sugar), right away, or he will get worse within a very short amount of time. This all means that his body cannot handle extra stress (any sort of sickness, healing, surgery, energy depletion), very well at all. Most times, these things have landed him in the hospital.

In the past 3 years, Henry has had an incredible amount of surgeries and hospitalizations. He has had about a dozen upper endoscopies – a long tube is inserted down the esophagus while under anesthesia to look and take samples of the esophagus, stomach and intestines. He has also had GTube (feeding tube) surgery, numerous hospitalizations for his symptom cycles, ambulance transfers to Mary Bridge and PICC line placement surgery – a long, thin tube that is inserted into your vein above the elbow for at home IV treatment. Most currently, Henry had Port placement surgery – a small, round, metal device was surgically placed just under his skin in his chest, connecting to his main artery to take place of the PICC line IV in his arm. This gives us access to flush his system as needed with Dextrose (sugar)/saline fluids. Right now, we are flushing nightly. The major hope and prayer for the Port placement is that by being able to receive IV fluids at home, he will be able to be treated at home instead of in the hospital. So far, miraculously it is working to keep him stable. He has had the port for about 3 weeks, and he already would have been in the hospital twice. But we weren’t, and we thank the Lord for that!

Henry is on a feeding tube feed every 2 hours, for 2 hours, all day. He gets medicines in between. We do orders for supplies for Port and Tube and an exhausting amount of coordinating and communicating with doctors. We have nurse come out once a week, or more if needed, to change his dressing and insert a new needle (soon we will be doing this ourselves, which feels completely daunting and terrifying). He is hooked up all night long to his feed pump and now his IV pump. With 2 machines beeping off and on all night, and with all the fluid, a lot of bedding washing, we don’t get much sleep. By the time the kids are in bed, we have 2 hours of med prep, IV prep, site prep and then giving it all to him while sleeping. Then we get to go to bed. For a few hours.

Thankfully, Ellie is completely healthy and such a joy and a blessing. We know that Henry’s disorders are never going away. We are in it the for the long haul. We are trying to figure out how to have some normal. Normal family time with no distractions and no meds and no prep. Even just a little bit. We are trying to figure out how to have the stamina to do this every day. And yet, we are THANKFUL. We are thankful to see his smile in between feeling bad and with all these things being done to him all the time. We are learning from him. We are blessed to be his parents and wouldn’t trade it for the world. However, with all this, we know we can’t do this alone and are so thankful for God and our family and friends.