Support Kaya’s Health Journey

Aloha,

My name is Chelisse and my partner's name is Danny. We have 4 young children ages 11, 8, 4, and 1.

Our youngest daughter Kaya has had a rough time this past year with constant hospitalizations and various PICU stays. She's spent the majority of her life sick to some degree and she’s roller-coastered in and out of the hospital 6 times in the last 6 months alone.

She’s hospitalized for various respiratory issues everywhere from recurrent pneumonia, hypoxia, RSV, respiratory failure, and distress.

As of now we still have no real answers as to why she’s constantly sick and why she gets “hospitalization necessary” type of sick.

The hardest part of this process has been the medical system and the wait time. She initially had referrals out for a various array of specialists. It takes months and months to get into any of them. However, since she’s been readmitted so frequently she’s gotten nearly all consults while she was in-patient.

We started with the pulmonologist who we did an array of tests for and they eventually referred us to GI specialist and the ENT. As of now we are doing more tests for these specialists, though we are just checking off things from various laundry lists of possibilities.

We have her scheduled to be put under anesthesia the end of July to do a lung and GI tract biopsy as well as a bronchoscopy, endoscopy, colonoscopy.

Right now we just know that her “not normal” things are, unprompted puking daily, constant never-ending congestion, frequent ear infections, cough that never goes away, she only poops once weekly on her own…she now takes twice the amount of Miralax daily as an adult and she still only poops once every 2-3 days.

She’s been on SO many antibiotics and steroids in her life it’s starting to get harder to keep her comfortable when she gets sick. They don’t really want us giving her ibuprofen unless she’s running a fever because it causes GI distress which she already has…if she runs a fever though we do give it to her with Tylenol because her fevers spike high and quick and she’s always at risk for febrile seizures. They don’t want us to give her steroids because she’s been on so many and she already a small-ish baby. They now recommend just keeping her well hydrated but even that is a task considering her baseline status is puking every day.

I guess I'm just saying it’s hard and we are looking for answers but don’t have much yet. We’ve since cut dairy out as the GI doc said she may have a milk protein allergy and her congestion has certainly cut down a bit. These three weeks have been the longest time in between hospitalizations.

Financially, her sicknesses have made our income very unreliable. I have quit working entirely because she requires a ton of care and cannot be around the general population since a tiny cold from someone almost guarantees she will need to be put on oxygen.

Danny is fortunate that his job has allowed him to not come in on a whim or be out for long spans of time. May alone, he worked a grand total of 4 days. She was hospitalized both the beginning and end of May for separate reasons. We are mostly living off credit cards at the moment and working as we are able to. All her hospitalization stints do not allow us to work at all since one of us needs to stay with her and the other has to care for our other 3 kids. We are filing for disability for her but the process on average is 9-12 months. To say funds are tight is a gross understatement.

Medical stuff is wild too….her first PICU stay alone the bill was $415k

Any assistance is appreciated so so much, I’ll do my best to provide updates as we know them

Mahalo