hazel update (aka the longest blog post ever).

so many of you have texted or called about what is going on with Hazel, and it is long and involved, so i thought this would be the easiest way to fill you all in. thanks for your continued prayers! for more info on her diagnosis, click here.

last thursday into friday the seizures started to increase and when we talked to the neurologists at Children’s National, they increased her Keppra dosages.

by saturday night she had had 16 seizures that day and we were told to give the Diastat (rescue medicine–sort of like an epipen but for seizures). we gave that and the upped dose of Keppra, but she still had a seizure an hour later. through the night she had 6-7 more with 5 of those between the hour of 5am and 6am. we called the doctors and they upped the Keppra again for the morning dose. the seizures continued and we were told to call back if she had 3 in an hour. around 9:30am, she had three seizures in a cluster and so i called back and they ordered another medicine (Trileptil). after calling several pharmacies, we finally found one that had it on hand and picked it up. she had her first dose of that around 12:45pm on sunday.

after her nap on sunday, she started having multiple seizures in a cluster again and when i called the hospital, they told us to take her to the ER. we arrived at Prince William Hospital around 6pm on sunday night. they did multiple tests for infection, urine sample, RSV test, etc and tried to get in an IV line. i say “tried,” because it took 6 tries and man, i was a complete wreck as they kept poking my baby. she was not happy either but they finally got it into her foot. jon took the other kids to our friends, Amy & Pete to have a sleepover. after many hours of waiting, they finally decided to transfer us back to DC Children’s National Hospital by ambulance. it was about 12:45 am and she had already had 25 seizures that day…

we got checked in and went to sleep around 3:30am. in the morning, the doctors decided to give her a strong dose of Dilantin through an IV. after taking it she was seizure free for about 24 hours, but she was also VERY groggy and asleep for most of that time. we were discharged around lunchtime on tuesday and after picking up the kids from jon’s parents and picking up our car (at the other hospital), got home about 6:00pm. which is about the time she started seizing again. she had 8 in two hours. we called the hospital and they said to give her another Diastat (emergency med). we thought we were going to have to go back to the ER and be admitted again, but luckily it stopped everything for the night. jon was so great and stayed up with her until 1:30am to watch her breathing (the diastat can cause trouble with it) and to make sure she didn’t have any more seizures. we kept her in our bed as well so that we could monitor her.

(side note: while at the hospital we found out that a good blog/real-life friend of mine has a baby cousin (she’s only 5 months old) who was starting her first chemo treatment and was at the same hospital–one floor below us! i was so blessed to meet this beautiful family for a few minutes and if you want to read their journey and/or donate, you can check it all out on Ashley’s blog).

this morning (wednesday) more seizures came in clusters and we even had one that was 5 in 20 minutes. we were told to give the Diastat to her again. she took it, it worked, and we were able to go see her neurologist which has been scheduled for weeks. the appointment went great and we really have a good feeling about her primary neurologist–Dr. Freilich. she gave it to us straight but also is very reassuring and accessible. we have been moved up to an aggressive medicine plan and had her MRI evaluated by the neurosurgeon that performed Brother’s craniosynostosis surgery. as neurosurgeons go, he is definitely one of the top guys in the country. he said if it comes to surgery, that we could get him involved. the surgeries that he normally performs are tumor related and way more involved. he said this one would be, and i quote, “pretty straightforward.” he’s a confident guy, but hey if my babies are going to have head/brain surgery, i want someone who knows they can do it well, don’t you? the only issue is the area of dysplasia is situated in between the part of the brain responsible for motor skills/development and speech. even so, he didn’t seem too concerned about his ability to take care of things if it comes to that. we were told that surgery will be more of a consideration if she “fails” three medicines. the neurologist said that unofficially, she has “failed” Keppra as it didn’t work well, at least on its own. On a positive note, the duration of her seizures have reduced from 25 – 30 seconds to an average of 15 seconds. It seems that some part of her combination medicine is working. we are home now and feel better having a solid plan and expectations for moving forward. our christmas plans to travel to Indiana to be with my family have been put on hold and we are disappointed about that, but are very thankful that things will hopefully be calming down around here.

ok, that’s a lot and yes, it’s a lot for us too. we feel like we’ve been through a whirlwind and it has been a LONG few days, but we also feel so incredibly blessed by our friends and family who have watched our kids, bought us dinner, sent us travel money, called, texted, face booked, prayed, and hugged us along this crazy road. THANK YOU!

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