Yet In Hospital (Partial Dutch Below)

Look ma, no hands

I wonder if someone didn’t like my last week’s entry and my optimism about stopping the seizures? As soon as I had posted it and gotten to the hospital, Gabriel had two significant epilepsy episodes. Then at 3:00AM he had maybe the worst episode he has ever had.

Since then the doctors have told us that they are at the maximum dosage of epilepsy medicine that they are comfortable with, and he still has a fair number of seizures, tho less than without the medicine. So we may have to live with seizures till healing comes.

Going Home?

Gabriel is now off oxygen and thankfully has the IV out of his head. What is left is one wire monitoring his oxygen saturation and a feeding tube. His feeding tube is still in since we have only been able to get partial bottles into him before he chokes too much on it or becomes too congested. He is very congested often, even tho he gets suctioned by the physiotherapist once or twice a day. (She says it comes from phlegm and saliva, not from his lungs.) The doctors are talking about him being released from the hospital, but it remains to be seen if it happens soon.

Screaming

Rather than a normal cry, Gabriel has taken to suddenly screaming wildly for normal things like a wet diaper (the norm for epileptic fits), to the point where it’s often hard to tell what’s a seizure and what’s a wet diaper. This screaming is rather disquieting, especially around 3:00AM. How Mama survives this is amazing. I’ve relieved her in the hospital maybe one night a week to help her catch up on sleep and sanity. On one night off at home, instead of waking up to express milk as planned she slept on for 12 hrs straight. That’s exhaustion.

Video

The below 2 minute video (if I ever manage to get it uploaded) is actually the first video I’ve ever taken of Gabriel, shot tonight. His feeding tube came loose, but we got that reattached. I cut out the sound to get rid of the irritating crying of the neighbor baby, so it is a silent film.

Naar Huis?

Hij krijgt nu geen zuurstof meer toegediend en het infuus is uit zijn hoofd verwijderd. Hij ligt nog wel aan een monitor die de zuurstofverzadiging bijhoudt en heeft een sonde. Die sonde is omdat hij meestal maar de helft van zijn melk op kan drinken voordat hij zich teveel verslikt heeft of teveel slijm uit zijn longen moet ophoesten. Zijn luchtwegen zitten nog behoorlijk vol ook al krijgt hij één of twee keer per da\ suctie van de physiotherapeut. De artsen zeiden dat hij misschien volgende week naar huis mag maar dat valt nog te bezien.

Krijsen

In plaats van normaal te huilen is Gabriel de laatste dagen begonnen te krijsen om gewone dingen zoals een natte luier (laat staan epileptische aanvallen), zodat het nu moeilijk is ze uit elkaar te houden.