Keegan’s ER Update (part two)

Continued…
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…

Cold Feet

Poor Keek’s and his cold feet!!!

Keegan has Reynaud’s, which means he has trouble warming up and his extremities get ice cold due to poor circulation. This is always exacerbated during the cold months. We try really hard to keep Keegan warm with a heated blanket and on his pads downstairs and a space heater nearby when needed. He has a space heater in his bedroom to keep his room toasty at night. I use heated rice pads to warm him up quickly, handy in the mornings. We also use foot warmers that stay warm for hours! I put toe warmers on before I put his shoes and AFOs on… if I didn’t his little purple feet would remain cold all day and doesn’t that sound miserable?!!
I preferred the foot warmer style because it covered his entire foot versus toe warmer that only cover half… but it’s better than nothing!
#teamkeegan #ablindjourney #specialneedsparenting#specialneedsmom #septoopticdysplasia #opticnervehypoplasia#reynauds #purplefeet #coldfeet #toesisfroze

Snow Fun – March 18, 2018

While Keegan’s been playing in the snow … I’ve been running in the sun. But don’t be fooled — it’s not that hot here in PA. 6 more weeks until our next half marathon. We will be running the Inaugural Jim Thorpe 1/2 Marathon. How are you spending your day?? #TeamKeegan #IRun4Keegan

 

 

This is the face of rare.

This is the face of rare. It’s also the face of HOPE, incredible strength, and endurance. Keegan was diagnosed with a rare disorder, Septo-Optic Dysplasia/ Optic Nerve Hypoplasia at birth, with it there have been many other diagnoses in the course of his 11 years… One thing I can say about Keegan and so many of the children with rare disorders is they are the most amazing children you will have the pleasure of meeting. Keegan inspires us because he tackles every obstacle placed in his way and nothing dulls the shine that is his incredible spirit!


Today is rare disease day. A day to recognize the many people diagnosed with a rare disease.

Running Buddy

#IRun4Keegan

What began as a conversation with a stranger at a race … has completely changed my life.

I am Tracy and #IRun4Keegan.  In the summer of 2014, I had a conversation with a runner that would forever change my life. She told me about a FaceBook group called IRun4 where runners are matched with children & adults with special needs. I love running and wanted to share that joy with others. I signed up to be a buddy and waited 6 months to be matched.  I was matched with Keegan on February 24, 2015.

Keegan & I have covered thousands of miles. His medal collection displays the races we have completed. My buddy can also be found sporting some pretty cool race shirts!

 

 

Keegan’s Story

Keegan’s Story as told by his mother Krystal.

My sweet Keegan was born in June of 2006. My pregnancy was kind of a mess, well not my pregnancy so much as my doctor. During an ultrasound, I was informed that it looked like there was a lack of fluid in my placenta and what appeared to be extra fluid in the brain. I was told not to worry, they would monitor me more closely with stress tests, and have orders for the baby to have more tests and see a neurosurgeon at birth. He would probably need a shunt to drain the excess fluid. I spent the remainder of my pregnancy listening to his heartbeat twice a week. Everything else was fine; there were no concerns from any of the latter visits. I spoke with the woman that was to be his pediatrician and she assured me that it was probably nothing. She said that the OB wasn’t overly concerned and I should not be either, it would likely be nothing at all.

I was induced a week early so as not to add any undue stress to the baby by passing my due date. Labor was a breeze, if you don’t account for the fact that induction is literally birth on steroids (OUCH!). Hooray for an effective epidural! Except that post-delivery was a little hazy. It’s a boy. I thought aw man, I was really hoping for a girl! I held him for a moment, before they took him. I woke up at some point and Keegan’s father told me they took Keegan to be monitored because he was having some trouble breathing. He said something about suctioning his nose, causing some irritation, no big deal. Later he told me that Keegan was whisked away to the NICU and that he was secretly terrified and didn’t want to worry me. My baby never did come back to my room.

Once I was able to walk, I went to see him in the NICU for the first time. Seeing my baby in a box, hooked up to monitors, tubes and wires. Scrubbing my arms with iodine and putting on a paper gown. Not being allowed to hold him. Not being allowed to breastfeed him. I didn’t know how to react. I don’t remember how I reacted. I think everything just shut off. I looked around at all of the other little babies in that room, my heart ached for every one for their families. I went back as often as I was allowed. The hospital allowed me to stay another day even though I could be discharged. Keegan was breathing better. He wasn’t eating enough, and had to have a tube in his nose. That bothered me. He was jaundiced. I still thought that everything could be okay. After 3 days, a sweet woman asked to meet with us and told us that Keegan saw a myriad of different doctors, had an MRI, and blood work and that he had Septo-Optic Dysplasia. She explained what is was, that he needed hormone replacement, his vision might be affected but it would be a while before we could tell. She was very encouraging. I remember taking the news as if it were orders for battle. Keegan’s dad began to crumble. Harder than hearing the diagnosis was leaving the maternity ward without my baby. Nobody knew how long he would be there.

This time I wouldn’t be rolled out in a wheelchair holding my baby. I would have to watch countless other mom’s as I visited the hospital multiple times a day taking their babies home, while I went to scrub my skin with iodine and look at my baby in a box being force fed via a tube down his throat. I had to hold it together. Keegan’s lack of appetite was the one thing holding him in the NICU.

The very day Keegan was scheduled for surgery to have a g-tube the endocrinologist put on the brakes . Results from his blood work showed he was growth hormone deficient. She believed once he had growth hormone replacement he would eat better. It would take a little while to get the medication, and I would have to be trained to give my infant an injection but she was insistent we wait to have surgery. At that point, I would have walked across hot coals and broken glass to bring my baby home. I learned to give Keegan his GH shot and taught all of the nurses in the NICU as well. I was there every night to give it to him. After four long weeks, we finally freed Keegan! With his growth hormone levels within normal range, he was eating enough to take the wretched tube out of his nose and go home! I practically ran out the doors afraid they would change their minds.

In those four weeks, my entire life turned upside down. I did not have a baby girl to name Isabella. My baby was not okay. I became a single mother after some utterly terrifying events. Nobody could tell me with any certainty what my future would hold. A week after Keegan was released I moved across the state to live with my mom and step-dad, looking for a fresh-start and desperately needed support.