Cai Care

Update 3/13/2024:

Cai’s health has improved a lot since his main stay in the hospital. He has gained a healthy amount of weight and his sleep apnea is nearly gone outside of the random central signal loss. He also just reached his 3rd birthday on 2/20! 

I am still trying to reach our goal in order to secure more financial stability as we still do not have home nursing. I have been working to get a special needs bed for him and some other equipment so that a night nurse can comfortably come in to care for him at bedtime. We are having some setbacks as far as insurance approval because he needs a recommendation from a speech therapist. I have already scheduled but the appointment isnt until September so I am looking for s more affordable sleep situation for him. 

Unfortunately, because of my lack of knowledge surrounding some of the assistance we receive due to his disability, Cai’s SSI payments are going to be garnished until what they deem we were overpaid is returned. After a review, I was told that because Cai’s hospital stay was more than 30 days, he was ineligible to receive the payments because medicaid covered more than 50% of his stay and bills. This means that currently our main/most stable source of income is being cut significantly until the overpayment is paid back. He was only due $30/mo for the 4 months he spent in the hospital. The garnishment begins in April. 

We truly appreciate all of the help and support both financial and mental from our community and beyond. 

Update 11/6/2023:

Cai has been out of the hospital now for one month. He’s doing so much better and has been enjoying his freedom 100%. Thank you to everyone that helped us out and those that are still sharing and donating as we continue this journey toward his health stability and home stability too. My baby is blessed to have this community. 

We are still getting settled into our new place as far as furniture and necessities but he is in a safe, healthy new home and thats what matters. 

Update 9/28/2023:

I was able to secure a place that is healthy and safe for Cais medical need’s with enough space foe his equipment. Now we are trying to gather the funds for the move in costs which is essentially $2000. Deposit, prorated rent, utility deposit and renters insurance. The unit is ready for move in now. I truly appreciate all of the donations and help we have gotten thus far and look forward to sharing the news that we are finally settled in a new space to begin his long term care plan. Unfortunately Cai is currently back in the hospital battling RSV and infection of his trach and gtube. 

My youngest son Cai has Trisomy 21 (Down syndrome) and was born with two holes in his heart. Since birth, Cai has been hospitalized more often than he has been home. As his mom, being his full-time caregiver is not easy and has truly taken a toll on household finances, making it hard to secure housing because there aren’t any options with an open landlord debt, even for HUD or Section 8.

This fund will go towards:

Paying off the remaining eviction balance

Move-in costs

A few month's rent (until we can hire in-home nursing)

Recurring hospital expenses (in the event Cai ends up back in the hospital)

As most of you know these past few years have been a lot for my family. During COVID, I found out I was pregnant and that baby Cai would have Trisomy 21 (Down syndrome) and a hole in his heart. Unfortunately due to being extremely sick during my pregnancy and unable to work, we lost our housing, resulting in an eviction that has yet to be paid in full. After giving birth they determined that Cai had two holes that needed repair. At 6 months old they considered him to be a failure to thrive as he was not gaining weight due to his heart working too hard to support his body. At 8 months we had an emergency that landed him in the hospital for months before having his heart repaired in January 2022. He did well for a month or so, until we noticed he started having trouble breathing in his sleep.

In August of 2022, he started showing signs of having severe sleep apnea and was constantly catching colds that landed him in the hospital for days, then weeks, and now months. Unfortunately as we waited for the sleep study, his apnea went undiagnosed and untreated which resulted in his breathing getting progressively worse. In February 2023 he got surgery on his airways that they thought would help with his breathing before we could get an official sleep study, it did not help at all. We finally were able to push forward his study to July 2023 and the sleep doctor determined that he failed his sleep study and required too much assistance breathing on his own. A couple of weeks later he had a tracheostomy to bypass his obstructive apnea in hopes of giving him a better quality of life. During his feeding therapies since, we found out he has been aspirating which was causing him to get infections in his lungs. Now he has a g-tube tube to assist with feeding as he cannot safely eat on his own.

Cai is not healthy enough to go to a medical daycare at this time and to hire in-home nursing help, his medical insurance would need to be changed which will set his care back as his specialists will be out of network; requiring long wait times as a new patient. In addition to navigating his disability, our housing is consistently unstable; I've received the help of multiple social workers in the hospital, and have exhausted all local and state resources for housing assistance.

There are no answers or timelines to tell when he will get better or be able to have more freedoms where he doesn’t need around-the-clock care or monitoring. But the hope is that one day he will be able to have a break from his health issues so that he can truly enjoy his childhood and be a kid. We truly appreciate everyone that has supported baby Cai over these past 2 years. Thank you in advance for your consideration and support for our family.

if you'd like to donate discreetly and immediately: cash app & venmo : $caicare