Puppy love ❤️

Our dogs love Keegan, and the warmth he provides (mostly from his thick blankets and heat pad)… they also love to clean up his food messes!! Keegan like to pet them occasionally and snuggle up with them too.

Meet Cooper

Meet Cooper. Keegan’s hero of a little brother. Cooper is 7 and the brightest light in our home. He loves to entertain and make others laugh. Cooper is incredibly insightful and such a love. I’d like to share a little about just how awesome Cooper is and how he helped take care of his brother Keegan during a really scary time.

First, a little backstory… Keegan has been getting over a cold for about a week. He’s been well enough to go to school but still struggling with some congestion and a nasty cough (mostly because Keegan doesn’t cough like everything else and stuff builds up… I literally get the urge to cough just listening to his little half cough… I’m literally getting the urge just writing about it, as I clear my throat).

Friday shortly after arriving to school, thanks to a delayed start, Keegan’s school called to say he threw up. (Ughhh insert grown up version of a toddler tantrum/teenage angst sigh) I pick Keegan up and we monitored him closely Friday, after eating dinner and acting relatively normal we put him to bed.

Saturday morning Keegan was happy and ate breakfast, we decide it was a fluke puke. He probably gagged on snot or something to do with his cough and he probably isn’t getting the flu or some stomach bug. Other than being sleepy and still having a cough and congestion Keegan seemed fine.

Around noon I noticed a stir and thought Keegan was finally waking from his nap… he’d been asleep for a bit and didn’t drink his mid morning cup. I noticed he was kicking his legs like he was stretching and waking up so I went to turn him to his back to offer him his cup and check his diaper. Expecting to follow that with getting lunch ready and proceeding with our usual routine.

Instead, when I turned him I immediately noticed his face was grey, his lips were purple, his eyes were not right, and the kicking wasn’t his normal stretch he was spasming. I immediately think seizure and descend into a panic looking for his backpack to give him his emergency shot of Solu-Cortef. Only Keegan, Cooper and I are at home so I’m bark orders for Cooper to grab his backpack (I finally managed to remember it was in the van still after picking him up from school the day before), which he did incredibly fast! While on the phone with the 911 operator, I give Keegan his stress dose of Solu-Cortef (life freaking saving best $21 I ever spent). Keegan’s in an altered state at this point, but he’s breathing normally and his color is better. I tell Cooper to put the chickens back in their coop area and to let the dogs outside since the paramedics are on their way, he promptly does. I continue to take care of Keegan, change his diaper and input the weight, count his breaths, relay info to the dispatcher. Cooper comes back inside and says he’s going to get his things together to go to the hospital and I hear him cry as he walks up the stairs… what an unimaginable stress to have to process as a 7 year old. I’m barely holding it together even now. I reassure Cooper that everything is going to be ok, help us on the way, he’s doing an excellent job helping, and send him to get dressed.

The fire dept and paramedics arrive with their flutter of questions and chaos and quickly load him onto a gurney and into the ambulance. Cooper is already in the ambulance and I scramble to find shoes and my purse and phone… as I hustle into the ambulance I hear Cooper chatting them all up, asking who will drive and noticing the map on the dash. Cooper proceeds to tell them all the things he knows about Keegan: Keegan can’t talk or see, he’s allergic to a lot of foods (which he lists somewhat accurately), Keegan doesn’t usually have seizures and it’s been a long time since he has had one. He then proceeds to tell us that he didn’t like seeing Keegan in pain, that it made him sad and he wished he could take the pain so Keegan didn’t have to feel it. I honestly don’t know how I managed to keep it together at this point but I took it in stride and told him he was a very sweet brother and talked about how it’s okay for him to feel sad and scared and assured him everything is okay now. I completely forgot about that little tidbit during all of this and now writing about it and remembering Cooper’s words brings me to tears.

Keegan is obviously uncomfortable and is fussy and complains every time he’s moved or jostled on our ride. At this point we know his oxygen levels and others stats are ok. He’s more himself, although cranky, and I’m less concerned.

My husband is headed home from work as we are en route to the hospital so he meets us as we arrive at the ER to pick up Cooper. I explain everything that happened to him along with how great Cooper was at helping to which Cooper responds that he doesn’t need any reward for being helpful. (I guess yelling at him a month ago for asking what was in it for him when I asked him to help me load Keegan’s things into the car so we could leave really got through to him.) I thank Cooper again for his bravery and help before they left the ER.

Keegan had labs, a flu test, and x-rays … we waited for the results and everything came back great. His sodium was even spot on perfect, which is rare and usually a trigger for crisis situations. Flu was negative and x-rays looked good. His temp was low, as usual. But his oxygen levels were normal and lungs sounded okay despite his congested cough. The doctor didn’t feel like there was anything to be concerned about or any reason to keep us… I also communicated with our Endocrinologist and she confirmed that it is possible for an adrenal crisis to cause a seizure. My speculation is that is what happened… especially when Keegan recovered so quickly after receiving his stress dose.

In the winning slot for shortest emergency room visit, especially when arriving via ambulance… we were released to go home and follow up with our doctors.

What a crazy roller coaster ride… I’m still recovering but I wanted to share what happened and how amazing Keegan’s little brother handled a scary stressful situation with the biggest heart.

Thanks for your continued prayers and love!!

Feb 18, 2019

Been quiet on the Keegan front… he’s been fighting these spots on his hands for months, regularly sending me spiraling into a puddle of stress. But we’ve been seeing the Dr regularly and trying to get to the root of it.


During all of this we’ve been really fortunate that Keegan has been healthy otherwise. Sadly Keegan caught whatever Conner had last week. He’s been pretty sad the last couple days and today is even worse. He’s down right pathetic. Hopefully he will start to perk up this afternoon! Send him some love and healing today if you could!


❤️

The Ups & Downs

Jan 14, 2019: Well… this is what we woke up to find…

Soaked and smiles! It’s always nerve racking to put him to bed and not know what I’ll wake up to… and when I get smiles I know everything’s good! Got him bathed and getting ready for Speech this morning. Hopefully that can help him stay on the upswing!! We’ve been having some weirdness with his urine output again, and that sure keeps us on our toes!!

 

Jan 13, 2019:  This guy has been very sleepy today… and not drinking… and not peeing. I’m hoping whatever will break and we can get back on track tomorrow. Say a little prayer will ya? I’m trying really hard to not get all stress ball!

Surprise!

Keegan’s grandmother Rhonda was surprised by her co-workers.

I had the sweetest surprise today. I was coming back from lunch walking in the doorway you see in the background.

I saw my manager Ashley walking away out of one of the offices.I saw she was wearing a TEAM KEEGAN-FINDING HOPE IN THE DARKNESS t-shirt. I said hey your wearing s Finding hope in the darkness t-shirt when did you get that. She turns around a big grin on her face and says yes I am, and then my other co-workers pop out of their cubicles with their Finding Hope In The Darkness t-shirts on too!!!

Who knows how long they’ve been planning the surprise. Weeks probably. They ordered the shirts secretly, had emails going back and forth planning for the reveal.

I was and am completely blown away. The sweetness, support, kindness and love. I cried y’all. They were all so proud and happy that they had surprised me and made me so happy.

No everyone involved was present today, sadly but I know know they are right here with me and #teamkeegan

Feeling the love y’all. God has perfect timing!!!! ”

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…