In addition to the fore-channels and process of attempting to get Juniper Jude transferred to Kennedy Krieger, someone suggested I email various people and share Juniper’s story with them. One of those suggested was the CEO and President of Kennedy Krieger, Brad Schlaggar. I was surprised and touched that he took the time to write back, given that his role undoubtedly incredibly highly demanding and his time is finite and valuable.
So, a big thanks to Dr. Schlaggar for taking some time to read about Juniper Jude and respond to my email. It means a lot to us.
We've Come a Long Way Baby Bee, But the Journey Continues. We will NEVER STOP FIGHTING
As many of you know, we’ve been trying to change the momentum of Juniper’s care for the majority of her life. (Read about her first few months here) She was born 07/17/2019 in a botched induction and emergency C-Section that lead to a hypoxic event that altered her life forever, before she ever had a chance.
Juniper in the NICU
We started at Rocky Mountain Children’s Hospital & at 1 month old, we transferred to Children’s Hospital Colorado thinking we were giving her a better shot. We could not have been more wrong. We could go into the major problems that we’ve had here, but rather than dive into that endless pit of despair, we want to focus on goals & what we believe KK can offer Juniper.
Juniper is a unique kid. Of course, all kids are unique, but as a result of her injury, she has complex problems that range from stomach issues, tense muscles (referred to as high muscle tone), breathing issues and of course, dysphagia, which is the inability to swallow or take food/liquid by mouth. The thing that makes this especially tricky is that even though we’re able to get her food through a GJ-Tube, she has oral and lung secretions that she can’t manage. It’s a very complex issue and based on what we’ve learned, GI issues complicate swallowing issues.
At Children’s Hospital CO, their approach, starting at day one, was to focus on supportive care, while putting band-aids (a whole host of medications) to help treat symptomatically. Part of the reason they’ve done this is because they simply don’t see enough HIE (Hypoxic Ischemic Encephalopathy) children to understand her. Another reason is hospital protocol. But at the end of the day, it boils down to one thing: they treat her as a text book case, when it’s impossible to write a text book on kids like Juniper Jude, because they are all so incredibly different.
Kennedy Krieger is an intensive, inpatient, rehab facility. They assess and view Juniper as the completely unique person that she is. They work to help improve functions and retrain the brain to do things it’s forgotten as a result of the injury. This is the difference between Juniper having independence, such as being able to breath without a respirator, being able to eat on her own OR (if we go the Children’s Hospital Colorado route), having her confined to a wheel chair, with a tube in her throat and being treated like a vegetable. She has too much potential, fights too hard, and we cannot let the latter happen.
What you’re seeing above is a kid in pre-crawl positioning. One afternoon, she spent 10 minutes trying to coordinate her legs and arms, while holding up her head. She has determination, the likes of which I didn’t know existed. She tries SO hard. She did eventually crawl, on 2 occasions, while we were doing tele-health PT with her therapist, Jan. All therapies were slowed, discontinued or regressed since being brought back to Children’s Hospital Colorado. She is now regressing and the medical team here has made it clear, unless we do what they say, they won’t “help” us.
I know this sounds like harsh language, but this isn’t an exaggeration. Up until 2 weeks ago, when a nurse mistakenly got Atropine in her eye, resulting in a CT scan, the first since she was 4 days old. They assumed that she had little or no cognitive function, that she would never be able to learn to walk, crawl, talk, eat, swallow. This, despite the fact that we have video and photos of her doing or attempting to do these things. Despite the fact that she learned stretches by simply watching her Mom do them, at 8 months of age. Despite the fact that a NP here has seen her swallow. Despite the fact that she’s had PT/OT/ST since her first release from the NICU. Despite the fact that we have private therapists that can confirm the progress she while made at home. See some of other “she’ll never” accomplishments here.
Danielle and I have begged, pleaded, done everything we know how to do, to try and get her the proper therapies at Children’s Colorado. And yet, they have refused and at times LAUGHED AT US for daring to view our only daughter as more than a pulmonary case. CHCO is the wrong place for her, with the wrong people, using the wrong approach.
KK is unique, they have a program designed specifically for HIE children. However, they are the best in the world, and as with most of the best things, it makes them highly desired which means limited bed space in their facility. COVID-19 complicates this, increasing wait times.
Unfortunately, Juniper Jude doesn’t have the luxury of time. We are currently unable to leave CHCO, unable to transfer to another facility and it gets more complicated because the doctors at this hosptial are insisting we let them give her a tracheotomy. There are multiple problems with this approach. It could harm other progress that Juniper has made, but the biggest issue is that it creates an immediate disqualification from rehab programs, including KK.
Time is running out. The tactics that CHCO use to coerce us into treatment plans we know are wrong are becoming increasing aggressive, backing us, as parents, into a corner. We’ve got to get our little baby bee to KK soon.
So this is a Hail Mary in the last seconds of the 4th quarter. Because bed space is limited at KK, we need a miracle. We need the folks there to recognize that this is a life or death situation for Juniper Jude and we need them to help us transfer her out of CHCO, before it’s too late.
We’re asking anyone and everyone with a connection to KK to send a text to their friend, talk to their supervisor, mention it in the next meeting, call their high school buddy. We’ve had some positive results by reaching out to their staff, but we need more help. You can contact us by FB messenger,email, or phone. I will answer you 24/7, if you can help Juniper Jude.
If you don’t have a connection to KK, there are some simple requests we ask of you. Click the share button below, tweet a link to our blog or FB page, ask your FB friends if they know anyone.
This is a long shot, but we're still looking for miracles, I suppose. Anyone know anyone at Kennedy-Krieger? Juniper…
We know it’s a long shot, we know we could still be turned down, but we love our baby bee more than life itself. We have to try. She’s been fighting since her first breath & heart beat, and now, we have to fight for her.
