Home from the Hospital - yet again.

Kate was discharged from Memorial Hospital at about 11am this morning.

She has been seizure free for over 24 hours now (on phenobarbitol). We're also going to be getting some oxygen to have just in case she has another episode.

The seizures she started having again on Thursday were different than the first ones she had back in July. With these, she just looked 'spaced out' and her breathing got really shallow and erratic. The scariest part was that she would lose her pink color and start turning blue. This is what prompted us to call her cardiologist. He said it didn't sound like her heart was the problem, but more likely seizure activity. He told us to go get her checked out (the ER was the only available place), and we're sure glad we did. She was having seizures pretty regularly at that point (hourly at least) and was 'deSATing' pretty dramatically. During the seizures, her blood oxygen saturation (SAT) had gotten down to the high 40%'s, which is very low. Thankfully, with oxygen and once the seizure was over, she rapidly returned to her normal high 90's. VERY SCARY.
They attempted placing an IV many times Thursday night, to no avail. Again, this was very traumatic for Kate (and us). Eventually, they decided to put a 'NG' tube in through her nose down to her stomach. They were able to deliver the large 'loading' dose of phenobarbitol that way. Kate never would have tolerated receiving 7x her normal dose orally. Kate did not like the tube, but ultimately, it was less traumatic than either the IV attempts or an oral phenobarb dose. The added benefit of the tube was the ability to feed her breastmilk directly to her stomach, since the large loading dose of phenobarb expectedly sedated her. Without the IV, she would otherwise have had no way of receiving nutrition.
She was kept at the hospital for Thursday and Friday nights for observation, the biggest concern being the seizures resulting in additional major deSATs. Thankfully, once the phenobarb was in her system, she did not experience any more seizures.
On a positive note, her 'normal' blood oxygen saturation is 99-100%, meaning her heart is functioning very well. As the cardiologists have been saying for a while now, she's doing very well from a 'cardiac perspective'.

We'll be making appointments soon with her team of doctors at UCSF. I'm sure we'll revise the plan for her care at that point, but for now, we expect her to be on phenobarb at least for a few months more. They also gave us some tips for giving Kate her medicine that might make it less of an ordeal for her (and us).