Keegan’s ER Update (part two)

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.

Keegan’s ER Update (part one)

Hey there #teamkeegan !!!
We’ve had yet another rough week following our last hospital stay that landed us in the hospital at UC Davis this time.
First a little back story… Keegan developed these pustules that spread into a difficult to manage rash that we thought for a minute was MRSA (GASP 😱 that was a good scare). It all started back on March 23. We spent a month trying to treat/manage it topically, but noticed swelling in his feet that became persistent. One morning I noticed his right foot was hot tobthe touch and he jerked away when I touched it… Ended up seeing out Ped on April 24 at which point we decided to start oral antibiotics. On the 26th I noticed his right arm and leg were trembling/spasming and thought that was concerning so we were sent to do labs, they came back normal. I woke up in the 27th to Keegan wailing in pain and an unrecognized cry which had me worried he was having a seizure. We were taken via ambulance to the ER, and admitted for 5 days. Extensive testing and everything kept coming back unremarkable… After some broad spectrum iv antibiotics, multiple labs, several ultrasounds, X-rays, 2 different MRIs we still couldn’t figure out why Keegan was guarding his hip and showing increased tone on his right side… We were sent home to follow up with our team and also getting in to see a Cardiologist about his bradycardia. Since we were released on the 1st Keegan hasn’t been himself. We saw the Peds office and they had concerns. We saw cardio and he had concerns. We got into Neuro and he is concerned… So he sent us to UC Davis to try and actually get to the bottom of things.

Here’s some photos and video documenting our experience thus far.

To be continued…