Emma Perkins

Update 12/5/23: First, my husband and I want to thank everybody for the outpouring of love. Sometimes with these medical journeys you forget you're not alone but you are so focused on getting your child the best care and healthy, you forget who's in your corner. Thank you to everyone who has donated PTO time to me and funds to our Go Fund Me page, Venmo and other means. Every hospitalization takes an unexpected toll on finances no matter how much you try to prepare. So, thank you from the bottom of our hearts!

Now for the main feature. Emma is doing ok. Surgery went well yesterday. We're happy to report her VP shunt and mini-flusher were not clogged and working! The mini-flusher is new shunt technology that was placed in September. She is the only one in New York to have it as less than 20 people were implanted with it at the time. . She just didn't have any spinal fluid to drain from her ventricles, where they are located, because her ventricles were completely collapsed. According to her neurosurgeon, slit-ventricle-syndrome can cause problems as these kids become teenagers. The last ditch treatment is the craniotomy she had done yesterday. This allows more room for her brain and ventricle to expand. It was a long night for her with little sleep because of hourly neuro checks, vitals, meds and always the never-ending alarms. The pressure feeling and uncontrolled pain inside her head is gone. She is experiencing a great deal of surgical pain where her skull was lifted but she is finally getting pain relief from medications and cold compresses. Repeat bloodwork showed she is in metabolic acidosis which is causing her cognitive issues now that the pressure from her increased intracranial pressure is gone. So, she received sodium bicarbonate to help reverse this. They will recheck labs again today. She'll have another CT scan tonight or tomorrow to check the swelling. Meanwhile, she can't lay down past 30 degrees. Her vision is improving. Her external lumbar drain will stay in another day or two. We will be meeting with the pain team to come up with options for meds for when she goes home. Also, she will be meeting with the mental heath team, as she has been struggling with medical PTSD and nightmares/night terrors. She does have an amazing therapist at home but needs some support here. That's the update for today.

My sister-in-law and brother would never ask for help.

But I will...

This child has been through more than any person should ever have to go through in a lifetime and the hits just keep on coming. Always one step forward, two steps back. Cheryl and Kevin are amazing parents....but even amazing parents need help at times. With all they've had to endure, especially within this year, things are more difficult now then ever. It's painful to watch, much less live it. Anything would be helpful, in so many ways.

"Emma status...

We want to update everyone on Emma's current situation as people are finding out and it's easier to notify family/friends on here. 10 days ago she decided to have an allergic reaction. We went to our local hospital (thank you SMC peeps! ) 3 times within a 24 hour period for it. However, the 3rd time turned into an anaphylaxis reaction. We have no idea to what but she has been well versed in epi pen usage (orange to thigh and blue to sky). She was transfered to Rochester last Sunday. The dermatologist and allergist teams were amazing and her symptoms improved. But, the next day she came down with an instant massive head pain. None of us thought it was shunt related or anything of sorts. After 3 days of trying every oral and IV medications available we agreed for a lumbar puncture. We were beyond shocked to learn she had high ICP. Her neurosurgeon believes the allergic reaction just snowballed everything. She has significant swelling on her brain. So, that brings us to today. She just went into surgery for a shunt revision and left subtemporal decompression craniotomy to give her brain more space and allow her ventricles to get bigger (she has slit ventricle despite having elevated ICP). The original plan was to leave that part of the skull of permanently but he has decided to replace it, but elevating it to give the space her brain needs. Then hopefully they'll remove her temporary external lumbar drain that's provided immense discomfort to her legs since Friday. She's had cognitive changes over the weekend that we pray is temporary. She has signs of both low ICP and high ICP so we won't know what's going on until after surgery.

I went to work Friday and Saturday because I have no PTO time. Things happened over those days in which I will NOT leave her again. This is her 7th admission this year and it's been an unbelievably stressful year."