Archive | June, 2015

Home sweet home

25 Jun

Just a quick update to let everyone know that Ladybug is now home.  She’s still pretty weak but otherwise getting better everyday.  On the down side, my little Monkey and I are now fighting whatever virus caused Ladybugs pneumonia.  It breaks my heart because I know how crappy I feel, and it must be a million times worse for the little ones.  At the very least we can all recover in the comfort of our own home.

Now I just need to get better so I can stock up on bleach and disinfect this entire germ infested house.

Back at Mac

22 Jun

On Friday morning Ladybug was admitted to the local children’s hospital. She had been battling a bad chest cold for nearly a week and it just kept getting worse. She had a high fever that wouldn’t go away and a very high heart rate. Some how she ended up with pneumonia and was given a cocktail of antibiotics. 

Sunday – I wanted to thank you for all the prayers and positive thoughts. The antibiotics finally have Ladybugs fever under control, and her heart rate is back down to normal. On top of the pneumonia she now has an ear infection and between the two is in a lot of pain. On the bright side she was smiling today when I suctioned her dribbles. It is now a game to see how fast she can chew the tube. 😀

Monday – At around 02:00 she had a coughing fit and couldn’t breath. This obviously freaked her out which made her cough even more. It was a vicious cycle. The RT (respiratory therapist) came in and gave epinephrine and saline via a Nebulizer. You could instantly see and hear it working. She fell back asleep and was smiling. So nice to know she’s having sweet dreams. 

This afternoon she transitioned from pedialyte to formula. Providing she tolerates the feed, doesn’t aspirate, and her blood work is clear she might get to go home in a few days. Fingers and toes crossed. 

It is not only hard seeing my princess so sick and in the hospital, it’s also tough to be away from my little monkey. I’m sure he misses his big sis and mama too. I do however have complete solace in knowing that Daddy-o is doing a fantastic job holding down the fort while we’re here. 

We’re definitely a great team. 

EEG Results

5 Jun

A few weeks ago we finally got Ladybugs 48 hour EEG results.  It was a lot to digest, and I wanted to try to understand as best I could before I gave everyone the update.

Ladybug’s neurologist personally called me to give me the results, explain them, and answer any questions I had.  It’s these small gestures that remind how fortunate we are to have such a great team of specialists looking after my little princess.

The Coles notes version of the EEG result is that Ladybug has a very rare and severe form of epilepsy known as Lennox-Gastaut Syndrome.  Basically it consists of numerous different types of seizures that are extremely difficult to control and for the most part drug resistant.

Two of the many types of seizures that they were able to catch were Myoclonic which I’ve mentioned before and auditory triggered seizures.  The auditory triggered seizures were particularly upsetting for me.  In hind sight she’s been having these for quite a long time and we didn’t know they were seizures.  Ladybug typically startles when she hears a loud noise, however this past year she zones out for a few seconds afterwards.  During the EEG the door on our hospital room would make a horrendous loud bang every time it opened and closed which would trigger these episodes.  Just for my own peace of mind I pushed the button and made a note of the time and what happened.  I’m so glad I did because they were indeed seizures.

With the new diagnosis of Lennox-Gastaut Syndrome, our original treatment plan of the Ketogenic Diet has been put on the back burner.  Ladybug will be starting a new med which is known for helping LGS.  Like all seizure meds it is hit and miss, however we’ll never know if we don’t try.  We will start Ladybug on Banzel (Rufinamide) next week slowly increasing her dosage week by week, while at the same time slowly weaning her off the Keppra.

With the help of social media I’ve found several different LGS groups who have been extremely supportive and are always there to answer any questions I’ve had thus far.  I’m very hopeful that we will find some form of treatment for the Lennox-Gastaut Syndrome that works for Ladybug. It would be really nice if the new meds work – but, if they don’t I just keep looking and exploring different avenues. Just as I planned to do before.

 

On a brighter note –  Ladybug will be finishing her first year of big girl school in 2 weeks.  I’m already trying to find fun activities to keep her occupied this summer.  We’re planning a huge road trip in August so that will be an adventure on its own.  Ladybug’s not so little brother is now 10 months old.  He has 5 teeth and counting, is standing up on his own, and I’m sure will be walking unassisted in no time.  It’s certainly a busy house and I absolutely LOVE every single second of it.

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