Help in McKenzie’s Fight for Her Life

UPDATE 5: From Rachel’s fb post on April 7th…
About 10 years ago, I went to a Christian conference and heard a discussion about this verse in the Bible. “Thy word is a lamp onto my feet and a light onto my path.” I keep remembering that conversation well this week. I’m reminded again that we get a lamp…. Not a floodlight. We can’t see the entire road ahead. Just enough for a step at a time, each day. None of us know exactly what tomorrow holds. 

That’s how I’m feeling now. I can’t look too far ahead or panic sets in. I wish I could answer questions but Danny & I are figuring lots out, one day at a time. Our lives are in FL, but our support is here and now we manage this disease. I know what the word progressive means but if you don’t have hope, you have nothing. We are figuring out how to be grateful for each day given to us. 

Every day, McKenzie is getting stronger. Today is one month off the ventilator! She is surprising us all with the gains. Our first roommate was discharged and our 2nd has been the sweetest and most considerate kid. We may be discharged April 19th. We have lots of follow up with neurology, ENT, cardiology and ophthalmology (and 2 possible surgeries coming). We are grateful to have the mitochondrial team walking with us through it all. As badly as I ache for home, I’m also terrified to leave. The PICU team saved her life, the genetics & mito team gave us answers and now the therapists & rehab have been helping her heal. I’m even healing here too in rehab in a way. CHOP has given us hope and even restored much trust that I had lost in the medical community. 

A close cousin of mine has been reminding us to not be afraid of tests or lab answers. They are pieces of this map as we are walking it all out. This month will bring more answers for Silas and I. His ear tube surgery and adenoids will be complete. Kenzie will finish rehab. 

UPDATE 4: McKenzie has been working hard and gaining strength. The various care teams at CHOP have been working with her daily. She’s a big miracle in a little body. While she’s been working hard in Philly, Silas graduated VPK and is having fun hanging out with dad and friends in Tampa. 

UPDATE 3: 

In her mother’s words—
McKenzie is fighting hard. She even gave me a high five and held up two fingers when I asked how old she was. She loved them singing and holding her ball. She started a mitochondrial mix yesterday in IV. This blend of vitamins and supplements can assist in repairing brain lesions. So we are holding our breath and asking for miracles. 

Genetic testing has been completed on her. Danny & I have also submitted our DNA. They are counting over 20,000 chromosomes. We were told we may have an answer next Friday. 

There have been talks about possibly extubation in the next 48 hours. Trying to keep her calm so they don’t have to sedate more which affects breathing. 

Silas cried hard last night FaceTiming me. He hasn’t seen me much since Feb 10th so it’s wearing on us all. He was used to me pouring into him and Kenzie all day, every day. I struggle. Everything in me wants to be home with both of my kids, making the end of his school year special, reading and helping him get ready for kindergarten, playing Barbie’s with Kenzie. I also watch McKenzie struggle now and see tears drip down knowing she is upset, confused and try to comfort her. This has been the hardest month of my life. One step at a time.

UPDATE 2: Just before midnight on 2/28, Rachel and McKenzie arrive safely to Children’s Hospital in Philadelphia. The goodbyes were difficult as the family had to split apart; boys’ team vs girls’ team I guess. Although they are in different places, they are continuing to fight this battle together. When they cannot, let us remember God can! We will continue to hold them up in prayer. Pray for this special team at CHOP to find answers for McKenzie quickly, & that a treatment plan can be figured out. McKenzie is a fighter! Stay strong Kenzie girl!

UPDATE: If you have been following this family’s story on fb, you have seen how much of a fighter McKenzie is. She wow’d doctors and staff in the ICU yesterday (2/23) as she was weened of meds and able to breathe, and even talk to mom and dad, on her own. We are still waiting on a diagnosis, and for testing to be completed to confirm or rule out disorders that are on the table. Our area, unfortunately, does not have many efficient resources in rare genetic disorders and Rachel and Danny are fighting a lot of hurdles to get a diagnosis. A diagnosis would greatly help the chances of a hospital, that specializes in children’s disorders, to accept her as a patient. As most ICU visits go, each hour is unpredictable. We know not everyone is able to give monetarily, but please come alongside the family in praying for McKenzie to fight strong, that her parents can withstand the rollercoaster of emotions and are given clarity when making decisions with little to no sleep, and that the doctors & staff are given knowledge to help identify and treat McKenzie as needed. We love you Kenzie girl and we come together as an army of prayer warriors to lift you up when you can’t. Stay strong…Kenzie Strong!

ORIGINAL: With permission, I am sharing details of this sweet, precious girl’s battle with a rare disease. The outpouring of prayer, support, love, and encouragement is a testament as to how loved, and loving, this family is. Her mother would NEVER ask for help, but is the first to offer help to others. Even in the midst of her own trials. It is now her time to “be still” and receive.

 

In her mother’s words— I’m so grateful to see Facebook and groups flooding with concern for Kenzie. For those that don’t know her well, we call her Kenzie Kat at home. (I’ve always called Silas, Silas bear because he is this sweet little cub). Kenzie is more like a cat. She is cute and cuddly but wouldn’t hesitate to scratch your face off. She likes certain people and the rest are lucky if they get her affection. We were told she was minutes away from death and she was still fighting them. Lips were blue, gasping for air, body temp 93, blood pressure 40/13, using every last ounce of energy she had to fight them while they were intubating her. Her skin was molding and horrible color of death. Yet, she doesn’t give up. I’m pretty sure she is even more like a cat and hope to tell her one day about using one of the 9 lives.

 

McKenzie is still fighting hard. She isn’t stable enough to wheel her down the hallway for an MRI. We are nowhere near in the clear. Today has been a lot on our baby girl. Her blood pressure and heart rate have been high, fever.. too much to write.

 

There are a couple of diagnosis that have been told to us but we need this MRI and a few more tests to totally confirm. I’ll share more of what the illness is exactly once I know. It seems to be several things at play. Right now, they are trying to heal her acidosis in the blood stream and let her organs rest as well.

 

My main prayer is she becomes stable and I can get her transferred to a more medically efficient facility that has fantastic programs for her metabolic conditions and the best resources in our nation. I told her that she hasn’t stopped fight and neither will we.