Hi everyone!

If you are like me you've been praying and rooting for Butterflie's health journey via Facebook. While also praying for strength and a good support system for Mommy.

Just following on this has been a long, frustrating, scary journey in just a short time. God placed it on my heart to help this family as we know there are many hospital stays, gas for vehicles, food for eating away from home and so much more. Unfortunately Mommy spends most of her days and nights at the hospital with her butterfly, therefore she has been missing work. Please help by donating to such a worthy cause

Here is their journey from mommy..

"JaKaiya was born at 35w4d October 23, 2021 and stayed in NICU 8.5 days before coming home. Developing fine as expected until first signs of being sick in January. At 2 months old She continuously would get high fevers but always tested negative After being admitted she caught Covid. After which the fevers continued and by April the choking episodes began. Doctors treated her as if she had asthma. But she was coughing up this thick phlegm I’ve never seen as my other children had RSV then asthma. Sent to pulmonary who just added the nebulizer. By June she seemed to have trouble breathing at daycare took her in they admitted her for observation; after 3 days and multiple departments seeing her they all wanted to see her in clinics. We are still dealing with the choking episodes on a daily. On August 17th not in out physical therapy appt 5 minutes she has another episode and they tell us this isn’t normal and she needs to have a scope done but it has to be scheduled so go to the ER. On the way down my son calls saying my mom is having another stroke (major stroke in March) and ambulance taking to KU. I rush home instead to give my sister my car to go to tge hospital it’s my birthday and I’ll just take her in the morning we been dealing with it for months so she’ll be okay. I’m up all through the night because it’s random. Aug 18 take her in after getting Bry on the bus; one ER doctor not taking us seriously so then the supervisor doctor comes in and tells us she’s contact ENT and we will be admitted We stayed until August 26th… in this time she was seen by ENT and ended up having surgery for Laryngomalacia and ear tubes. They later did a swallow test and diagnosed her with dysphasia Aug 19 she not had anything by mouth since. All meds and feeds through feeding tube. We also get a EEG for seizure like activity staring episodes as well as the start of genetic testing because there is a developmental delay; JaKaiya can’t sit up, crawl or pull up at the time. She favors her right side. Her eyes are now different and she diagnosed with estrophia. Opthmology says she doesn't need glasses but muscle strengthening. September we return twice, one week each time for aspiration pneumonia. Genetics teams comes in that last week to inform us that she has the ELANE gene which means neutropenia there are certain medications she can’t have but at this point Tylenol…. The other genetics diagnosis is mitochondrial disease which could be the cause of the delay and now poor weight gain. The biggest concern is my baby doesn’t cough. They send us home with a portable suction machine. I’ve now even notice she doesn’t cry anymore either. We return in October for Rhinovirus. Only kept us about 4 days. This time the send us home with a cough assist machine. This machine is designed to inhale and exhale for her and to bring all this phlegm up for me to suction out. In hospital they also deep suction but I’m not trained to do that. Meds are added as her daily routine but later finding out they may cause the phlegm to thicken. All these hospital stay are delaying our clinic appointments for ENT, Neurology, ophthalmology, Pulmonary and Hematology. We are needing to do weekly blood draws for genetics to watch the mutations but being in the hospital they can’t do it . Finally we get a referral to GI who refers for surgery consult to change feeding tube placement ENT appt moves surgery up to help with the overall care. November 22 surgery for GJ tube due to oxygen levels they decided to keep instead of outpatient we stay a week. Friday of discharge she starts bleeding at sight, another surgeon says this is why they don’t like doing the GJ tubes and basically it’s a seroma and it’s just got to run it course and this is the start of many complications with the GJ tube. They send us home with a package of gauze and show me how to change it. By late Saturday early Sunday she developed a fever and by Sunday the blood had turned green ( infection) we returned to children mercy they take X-rays same surgeon that discharged us came in like he was concerned and i repeated what he told me so another surgeon stayed with us even yo X-rays and had them immediately put her on two antibiotics now this another week in the hospital.

I lost my car on Oct 9th while we were in the hospital. I’ve been in communication with HR and they keep telling me I’m not eligible for FMLA… I came back from maternity leave Dec 9th worked up through June for summer school… yes it was days missed due to Covid and dr appts but they saying I only have 657 days I don’t get it and still no answer as to how they came to that number when it should be more. So after august anytime off is unpaid absence….

Now here we are again… Dec 16th doing morning routine with cough assist machine it’s 5 cycles by the third she starts looking funny very lethargic and now can’t breath. I call 911… in mean time gave albuterol and mouth to mouth. Taking her out to head to children mercy EMS said no closest hospital is KU…. They immediately intubated her and got her up to ICU. The doctor said she is very very sick. Her lungs were not good at all and his biggest concern is that my daughter doesn’t cough. He is gonna treat her like his own. He noticed her tremors asked about the seizures we don’t have confirmation on and gave her something and they stopped the put her on a paralytic because of the ventilator and ordered a EEG. It did not show seizures but maybe encephalopathy but to confirm we need a MRI… with a ventilator that would not be medically appropriate December 17th she coded twice at 4:51am and 11:30 am.

In the mean time they are giving her lung treatment, daily chest X-rays and has had two echocardiograms which showed she has Pulmonary artery hypertension. So now she’s hooked to a nitro machine… more antibiotics and sedation meds. She has had nose bleeds in the last week. Tremors are back and she is fighting the sedation she is moving trying to get up.

I have been here since but to try to keep my job and some kind of income I return Jan 4th from winter break. Letter submitted to HR informing them that at any time I may need to be absent or leave to return to the hospital

We are on day 23….What it may look like once they try to extubate her I have no idea but to pray that they don’t have to replace it. And then once she’s released whether she will need home health care. I know they won’t pay me to take care of my own child SSI interview was Oct 17th and still no answers of approval."