Thursday, August 25, 2011

Telegraphic status update

I'm typing this post on my phone while standing beside Izzy's hospital bed at the pediatric intensive care unit so it will be a telegraphic style status update. On Tuesday we had Izzy admitted to the hospital because the frequency of her seizures went from awful to horrendous and we suspected that she was in nonconvulsive status epilepticus. The 24-hour EEG confirmed our suspicion and showed that the Bean is indeed in the state of constant seizures. She received a dose of Versed to sedate her and break the continuous seizures but unfortunately it only worked for an hour before her brain returned to seizing nonstop. Right now she is on a drip, receiving Versed intravenously until tomorrow morning and we are hoping that it will do the trick. If the intravenous drugs can't break her out of the nonconvulsive status then she will be put in a coma to reboot her brain. Once they induce coma, Izzy will be intubated and a central line will be put in. Despite of the annoying smith hat on her head, the pesky cannula in her nose, the stinkin IV in her arm and all the stupid wires stuck on her, the Bean is still her delightful charming self, smiling, making happy sounds, flirting with the nurses and the doctors. The Versed should have knocked her out, but she just looks like she had a couple drinks, smiley and mellow. I asked the nurse and the doctor if I could get a shot of Versed, but they didn't seem to take my request seriously enough.

16 comments:

KWombles said...

((())) Keeping you in my thoughts.

Jenn said...

praying! (plus I think i want to try some versed, too)!

Kelly said...

Oh, yikes! Thinking of you and your family. And saying some prayers, too.

Selene said...

That's awful, here's hoping the meds do the trick!! Thinking of you all.

kristina said...

with you and thinking of Izzy constantly.

Phil Dzialo said...

In our thoughts and prayers; sending healing light and energy

Eric said...

I have a supply of Versed (Midazolam) at home, used to give it intranasally to Segev but it is not a spray solution so the viscous drops are poorly absorbed. Try and get the nasal spray at hospital to take home with you.
Segev also was not given enough via drip during our last SE epidsode that resulted in three weeks hospitalization, pneumonnia etc. etc. Get her out as quickly as possible is my advice.
If the physicians had listened to me Segev would have been out in 24 hours. The dose must be enough to wipe out consciousness from the get go otherwise you run the risk of extended stay with all of its complications.
I don't agree at all that intubation would be necessary. I know that Izzy is a different magical creature than Segev but even with his supressed lung function he has never needed to be intubated despite dozens of episodes of SE, most treated with Midazolam at home. Sufficient sedation needs to be implemented and then take her home as fast as possible.
If you increased any of her meds over the last ten days or so, that too can be the culprit behind increased seizure activity which led to the SE.

Beate said...

Oh no! :-( I was already worried because you did not post anything for quite a while.

Hope Izzy gets what she needs in the hospital to get her back on her feet.

Sending you lots of hugs and positive thoughts and vibrations!!

A said...

May the amazing Bean and her lovely parents be safely home soon.

Addie said...

Praying, praying, praying for Bean!! Get better NOW and go home with your loving parents.

mhk said...

Really hate to hear that you are going through all this. I dislike anything connected with hospitals and agree with Eric that the sooner you can escape the better. Know you have to go through the processes. Am thinking of you all and hope the situation is settled quickly and with as little stress as possible. Keep that sense of humor charged!

tonyandann said...

thanks so much Erika for posting an update- praying for you all!

psalm117ptg said...

I have been praying for you and the sweet Bean. We don't know eachother, but I have been following your blog for a very long time. Maybe this isn't the best time but you and Izzy are HUGE encouragements to me. God is always faithful.

BLOOM - Parenting Kids With Disabilities said...

Sending you all warm hugs and hopes for change! xo

Kim Ayres said...

My thougts are with you ((hugs))

erika said...

Thank you guys for all the support. It really means a lot that you are thinking of us.

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