So many friends and family members donated to our fundraiser last year. We were overwhelmed with the support. You may remember a little of Peter's story...
When Peter was 10 months old our lives turned upside down literally within hours. He went from a health (VERY round and jolly) baby to a critically sick patient at Hopkins. We spent days in the hospital watching him deteriorate. Feeding tubes, round after round of bloodwork, tests, scans. No one could definitively diagnose what was wrong. Peter continued to decline until he had a massive GI bleed on Christmas 2018. It was one of those moments where you thought things couldn't get worse, and then you kicked yourself for thinking that. Things went from bad to every parent's worst nightmare. We were rushed to the PICU where we spent 12 hours watching Peter die, not sure if he'd make it. He had no blood pressure, and they couldn't stop the bleeding.
If you read our story last year or know our family, you know Peter did make it! The amazing teams at Hopkins, so many working together, managed to save him. It still took weeks to stabilize him and figure out the underlying cause of his illness. Hopkins had recently lost its only Pediatric Rheumatologist and was down a critical resource in putting the puzzle pieces together for Peter.
I have since come to find out more about Pediatrics and Pediatric specialists.
The NYT published this OpEd that took my breath away: "Why Doctors Aren't Going Into Pediatrics." This talks about the lack of medical care available to children all over the country, the shortage of pediatricians, and the decline of pediatric specialists, like Rheumatologists, without whom Peter may not be here. (PLEASE, give it a quick read if you have time.)
https://www.nytimes.com/2024/07/01/opinion/pediatrician-shortage.html?smid=nytcore-ios-share&referringSource=articleShare
This is a quick note I sent to Johns Hopkins. This week happened to be Patient Experience Week, and we were asked to share stories that highlight the four tenets of patient- and family-centered care: collaboration, dignity and respect, participation, and information sharing. I sent the following two recent experiences:
Shockingly, despite all the time we've spent at Hopkins, we had our first visit to the infusion clinic this past week. Both the clinic and the nursing staff take the four pillars mentioned above: collaboration, dignity and respect, participation, and information sharing, and perfectly exemplify them. We have a close relationship with our pediatrician (as I'm sure most families with chronic health issues do), and it's always been convenient for Peter to receive his regular injections and blood work (about once a month) at his pediatrician's office. He needed some specialized testing, so we had our inaugural visit to the infusion center. From the moment the nurse took us back, everything was 100% focused on making the experience trauma-free for Peter (who just turned 7). That included body language, a constant smile and positive appearance, tone of voice (friendly, calm, and warm tones), a relaxed tour of the facility (even though we wouldn't be staying long), thorough yet age-appropriate descriptions of what would be happening, patience and care as she was setting up, letting Peter explore some of the materials (gauze, blood collection tubes, looking at his veins under the UV light...what could be cooler). There was no rush, only keeping with the peaceful setting. The language used was helpful for both of us. The facility itself was well stocked for kids, but more than that, Nurse Karen made Peter feel comfortable. No chair or game or snack can replace genuine human contact. Peter felt safe. Peter was so impressed by the experience he didn't want to take his gauze bandage off for several days.
Feeling seen even when you're not. Peter's health issues, like so many, are still a work in progress. We spend a lot of time tracking his symptoms, filling out shared Google docs (between my husband and myself), reporting to our AMAZING rheumatologist on any recent developments, and modifying his care plan as needed. Dr. Shalen is always checking in, asking how he's doing, and following up after he's been sick. This alone is amazing. To feel like you're truly part of a team and that your doctor is invested in your child's health is a blessing and something I wish for all parents. I recently received a message from Dr. Shalen saying they had discussed Peter at the weekly division rounds and wanted to complete additional testing. This literally brought tears to my eyes. I think most people expect to have a doctor's attention during an appointment or if they are reaching out with a question or concern. Knowing that your child's care is still at the forefront even when you're not there, not in an appointment, or not actively engaged is amazing. This is the other side of collaboration and information sharing. When your child's medical care doesn't end when the appointment ends. Having a team that is always strategizing about ways to help him. I believe this is the difference between Hopkins and so many other hospitals.
So, this is why we are here, literally, why Peter is here, healthier than ever. And why I am here, asking for your support again this year. Support for a medical institution that needs it more than ever. Support for a department that has changed my family's life. Support for all the kids out there who still need these scarce resources.
