donderdag 25 november 2010

Day 4 of the ketogenic diet

Had a good, long night! Kalle's epilepsy is much better today, compared to yesterday. I found out why the night before was so bad: We mix Kalle's meds - including sleeping meds - with a bit of nutrition. The sleeping meds usually come in a small capsule that we empty into the bottle. But in the hospital we get the med in a syringe, dissolved in some water. Yesterday I noticed that the med (a white powder) hasn't been dissolved at all....the biggest part of the powder just stayed in the syringe and didn't go into the bottle. So I guess Kalle didn't have any sleeping medication at all....which explains why he didn't sleep....which explains why he had so much more epileptic activity. *sigh* Pretty stupid that such a simple, practical thing causes so much trouble.

Program for today: ECG and a visit to the Snoezelkamer:

In the afternoon Jan and I are going to the hospital where Kalle is born. And where everything started. We're going to talk to one of the gynecologists to get some answers. It's a long story some of you know. If you don't: I might explain everything another time. It comes down to the question: If we had known certain things at the right time, would Kalle be sick now? This appointment might be the beginning of  a long complaint procedure.

To be continued....

5 opmerkingen:

  1. oh no how frustrating about the meds not dissolving... geez I guess it just shows you have to keep your eyes on what the doctors and nurses are doing every step of the way... crazy

  2. succes! Hopelijk is het een open gesprek....

  3. Ik hoop zo voor jullie dat ze iets zinnigs te zeggen hebben. we duimen voor jullie. nogmaals mijn complimenten voor de mooie website. veel kusjes voor Kalle van Mila en Iris

  4. Lieve luitjes,
    [sorry - reaction in Dutch is somewhat more easy]

    Ben een aantal berichten achter elkaar aan 't lezen. Bij deze moest ik even reageren. Kan me voorstellen dat de artsen niet erg happig zijn om de waarheid te vertellen ... Dus als het nou nodig is om andere mensen in te schakelen en jullie hebben er behoefte aan, dan wil ik best proberen een soort intermediaire rol te vervullen.