I thought it would be best that I allow everyone to be able to follow Enoch’s story in the appropriate timeline. I will make this post as the baseline for how we got to where we are now. It will be long, and most of you have read this via our social media posts and GoFundMe. Again, thank you for following us on this journey. A lot of our family and friends have only been able to receive updates via phone or in person because they do not have social media, so this will allow for them to have a full comphrehension of Enoch’s story and how this nightmare began.
NOVEMBER 14, 2021
Many of our family and friends have been following Enoch’s story for the past week and a half. His health had declined in a matter of days which resulted in him admitted to the ER at the Miller Children’s Hospital in Long Beach.
His symptoms began on November 2nd when he started a fever of 102 that we couldn’t break no matter what fever reducer they tried. He had black diarrhea, vomiting, and developed a rash all over his body. Tha and I assumed he had a base case of teething. Eventually his eyes, neck, hands, feet, and abdomen began to swell. He would only sleep for 30-45 mins at a time then would wake up screaming. He stopped eating solids. He only had a few oz of milk the day before we went to the hospital. By day 5, his oxygen levels dropped below 89% and we rushed to the hospital (We have a pulse ox at home due to his asthma).
When he was admitted to the hospital, he had lost half his blood count and needed an immediate blood transfusion. He also had a kidney infection that they are still currently treating.
They considered him a medical mystery for the first week in the hospital because of all his symptoms and results from the lab would come back negative for all the possible diagnosis they thought of.
They found blood in his stools and is losing too much of his albumin protein that is causing the swelling. They still do not know why.
He also has had respiratory issues that the pulmonologists are still trying to solve and are waiting results. They are pending a bronchoscopy at this time.
He underwent a endoscopy and colonoscopy and found that he has lymphoid hyperplasia, however they cannot treat him with steroids due to all the other medical issues he has going on. Steroids will also raise his blood pressure which is already dangerously high.
The biggest news that our family has received is that he has a form of kidney disease. They still do not know what it is and the nephrologist is consulting a 2nd opinion with his team in Childrens Hospital LA. He is too small to do a kidney biopsy on. They are scrambling to find other options. Both his kidneys are affected and are the size of an adult. His kidney disease is spiking his blood pressure which is in turn doing more damage to his kidneys. They have already changed his medication and increased the dose, but it is still uncontrollable at this time.
Enoch and I have been in the hospital for 9 days now.
We have already been informed that baby Enochs medications to help manage his kidney disease at this time is not covered by his insurance. There are no alternatives because he is so small and needs to take them as compound. He cannot swallow tablets yet. He is only 13 months old. The medication is expensive and could be required for the rest of his life to keep his kidneys functioning successfully.
They do plan to continue treating him outpatient with Nephrology/Renal, Genetics, Gastrointestinal, and Pulmonology specialists. They can’t release him while his blood pressure is uncontrollable.
Everything is still new, there is still so much more to discover about his disease and what stage he is in. The family is incredibly overwhelmed with “grief”, heartache, pain, and sorrow. Thank you for the continued love and support for our family during this extremely hard time.
FEBRUARY 6, 2022
2 and a half months into finding out that I have a child with multiple medical conditions has still left me speechless. Each day I am still at a loss for words and find it difficult to think of how I can even begin to explain my feelings and the impact this has had on our family.
It’s still hard to believe that our lives would never be the same the day Enoch was admitted to Miller Childrens Hospital back in November. I look bad at his baby pictures and even a week prior to him showing symptoms of his health declining, and think about how perfect he looked… how I would have never in a million years think life would end the way it is now.
I question why God thinks I am strong enough to handle this. I reflect back on every movie, show, IG/FB/Tiktok video of parents with sick kids and how I thought to myself “There is no way I could ever go through that.”
But God made Enoch extra special for us. And although this feels SO unfair, I know God does not make mistakes.
If I could elaborate on how we ended up at Childrens Hospital LA, you would think it was just coincidence. But it’s not. It was Gods plan. And I am so thankful that He has been answering our prayers. So even 2 and 1/2 months post discharge and being bounced around between different doctors and 2nd opinions, we still do not have a definitive diagnosis on Enoch’s medical conditions. However, I am grateful that we are working towards some parts of the why he has been showing symptoms and sick on and off since he was 3 months old.
At 3 months, Enoch got sick for the first time with me and my 3 year old Titus. Titus and I got better but Enoch stayed sick. He had a cough, mucous and wheezing that all never went away. If you’ve spent time with Enoch, you know he produces excessive mucous and is a loud breather. We often see his stomach and neck with retractions which means he’s struggling to breathe. We and his doctor suspected it could be severe asthma.
His 1st visit with his new pulmonologist at CHLA evaluated him and determined his condition needed urgent care and admitted us into the hospital right away. The pulmonologist and ENT teams worked together to do a high risk set of procedures on him with a possibility of ending up in the ICU and medicinally declining. His oxygen levels did go down during the procedures and he stayed on oxygen for quite a few hours until he was stable enough to recover. They did determine he has information in his lungs and airways and mucous inside. We are pending the results of the culture to see if there is any bacteria growing in his lungs or from the mucous.
He did an MBSS which is a radiological swallow study that determined he has swallowing issues which results in most of all thin liquids spilling into his lungs. He has been diagnosed with dysphasia and is high risk for aspiration and penetration. He will start therapy but in the meantime needs to take all liquids with a thickener to prevent further damage to his lungs. They think this could be the reason he has had excessive mucous. They also think the chronic cough is from liquids swallowed (including saliva and his own mucous) and choking on it.
We know he has some form of stage 1 kidney disease but not sure which one. Three hospitals (Millers Childrens/UCLA/CHLA) all suspect it is polyscystic. His recent ultrasound does show extremely small speckles that can be hard to identify in his extremely large kidneys. The doctors at CHLA say this is how it usually presents in the beginning but since they are so small, we cannot confirm until the genetic testing come back. The blood pressure medication he is on is not working as efficiently as we would like it to. They have increased his dosage – his blood pressure is way too high even with the medication. If we can’t bring it down with the current medication then we will need to try something else. The goal is to prevent further damage to his kidneys.
He is losing protein through his stools and don’t know why. He keeps losing blood through his stools and don’t know why. We see his GI soon for further testing. He has already had an endoscopy and colonoscopy that showed he has lymphoid hyperplasia but the treatment requires steroids that is bad for his blood pressure. He is untreated for these issues at this time.
Enoch also received a sleep study which determined that he loses 67% of oxygen during sleep. He has been diagnosed with central apnea. He now requires oxygen whenever he sleeps or naps.
Enoch is only 16 months old. Yes, I am grateful that we are finding things out sooner than later but I am becoming more overwhelmed as we find out that he has more medical conditions.
We do want to thank everyone for the continuous support and donations. The thickening gel we need for Enoch is essential for his survival and without it, can lead to recurrent pneumonia and infections because of the liquids spilling into his lungs. It is very expensive and insurance does not cover this which I think is astounding considering this is medical necessary to LIVE!! You guys are a part of Enoch’s journey to healing and LIFE. I cannot thank you all enough for your constant love. Our baby deserves a chance to live as much of a normal life as possible and you guys are helping us give that to him.
"Be still and know that I am God" 