So we got the rash under control, swelling in the feet dissipated, spasming and tone in the right side is closer to baseline. We have a new concern about heart rate and decreased activity. Continued concern about Keegan’s inability to move his hip, refusal to sit stand or walk, and obvious discomfort. Confusion about the underlying cause for the tone issues, and hip pain.
We saw Neuro and he felt confident it isn’t seizure activity and isn’t neurological… So he sent us to UC Davis where he would be able to be seen by a Peds Orthopedic Specialist.
We had a pretty rough night getting through the ER and admitted and acclimating to a new hospital, system etc… But, this morning we were able to meet with a team of Drs. Have had consults with several specialists, and have many eyes and brains at work…
What we’ve determined this far:
•Everyone is 99% sure the hip is not infected
•Keegan has hip dysplasia (news to me), they believe it is plausible that is what is causing him pain. We will be seeing a Peds Ortho to monitor this and determine if any interventions are necessary
• PM&R will be getting involved to discuss Keegan’s tone issue, the use of baclofen to manage it, and continuing to monitor this after we’re release (he was payed away so we’re still waiting for him to return to discuss everything)
• Cardio came and is very confident that there is nothing wrong with Keegan’s heart and is not concerned about the bradycardia. He believes this is Keegan’s norm and that following up with our new Cardiologist at home will be sufficient.
I think that’s it… I’m running on information overload and 3 broken hours of sleep but I wanted to let everyone know what’s going on. It’s been difficult to explain because there were so many I don’t knows.
I’ll leave you with a photo of us on our way to the Drs office yesterday and the cute little sign on the door to Keegan’s room.