Katie was discharged from the hospital yesterday. It always takes way longer than they say. 11am turned in 1pm which turned into 2pm….sigh…I honestly should know this by now. Our Thursday early afternoon follow-up neurology appointment turned into a hospital admission for 3 nights.

Before I get into the nitty gritty, it was interesting to log in to facebook and see my daily memories for the following week of the calendar over the past few years. Just last year at this time we were at Disney for Katie’s Make a Wish trip. In 2011 we were in in-patient rehabilitation at Levine Children’s hospital recovering from her 1st brain surgery. In 2013, Katie was recovering from her 2nd brain surgery at Duke Hospital and in 2015 the same week I had just published Dream Big Henry! Crazy stuff, huh. It’s cliche to say that life can change on a dime but…well, it really can and does. What were you doing this week last year? 5 years?

To catch you up, I’ll summarize the past few months. It’s hard to remember who I told what and when. Katie has been on 3 seizure meds for quite sometime. I took her for a routine follow-up appointment in October. The bloodwork done at the time showed the levels of one of her meds was high….extremely him. For some reason meds can interact and cause the numbers to be higher when taken together. We decided to decrease one of the meds over the course of a month’s time and recheck her levels. After decreasing the medicine for a month the seizures started to increase and she would be nauseous, she wouldn’t eat and her balance was poor. We then determined that the med we decided to wean was actually doing more for her seizure control than we thought so we had to go back up on the dose which got us back to toxic levels. By this time we were in December and she really wasn’t herself so I updated her doctor. We did bloodwork again at the beginning of last week and they got us on the schedule to come in Thursday.

While we were there they got her lab results and now the numbers for her liver enzymes were high. She sent us to lunch and told me she was going to consult with neurology and hepatology while we were still at Duke to get some answers before we got on the road and possibly have to return. Several conversations and hours later they all thought it better to stop a medicine right away and do further tests on her liver. The safest way to do this was in the hospital because of possible seizure increase from stopping the medication so suddenly.

Finally around 4 pm we got the call that a room was ready and we just had one more stop before getting escorted to our room. Last stop, covid test. After a very unpleasant daughter that did not appreciate having a swab shoved up her brain and a 15 minute wait they informed us she was positive. UUUGH…now we had to wait to see if she would still be admitted and where would she be put for her stay. What the heck? We all had covid before Christmas and haven’t been anywhere since. School hadn’t even gone back yet. I was very confused to say the least. They ended up admitting her but we were put on a different wing.

To not get into all the complex medical jargon, we basically had to shelter in place in our quarantine room and let the medical professionals do their thing. Peds, liver doc and neuro all consulting together. It is documented in medical research that particular seizure meds can effect the liver but with the covid diagnosis thrown in they had to be sure that wasn’t causing havoc on her liver. I learned that you can test positive for covid 3 months after having the virus. 3 MONTHS. While they had her there they went ahead and did a full liver work up including an ultrasound just to be sure everyone could be on the same page.

Katie was pretty much in charge for 3 days. She pushed all the buttons on the bed. She completely monopolized my phone watching youtube videos. She got the comfy bed while I slept on a rock. She even controlled the TV the majority of our stay. She made me watch news, awful cartoons, infomercials and telemundo. Don’t ask. Who knew accents and dramatic acting were so entertaining. Plus, I really think I need this new egg pod thing that quickly and effortlessly boils and peels eggs. Must have egg pod!!

I must admit, being quarantined in a hospital room has its perks. It isn’t fun being stuck inside a tiny room but everyone stays out unless necessary. No janitor coming in a 3 am to take out the trash or a doctor with 10 interns doing rounds at 6:30 am every morning. No cafeteria lady interrupting nap time to retrieve a lunch tray. Plus we got a fun walkie-talkie to talk to staff through the door. Katie kept stealing it and ordering coffee and chocolate milk.

In conclusion, her liver numbers are starting to go down. Thankfully we haven’t seen much change in stopping the medicine so suddenly. Her balance, appetite and behavior are improving. We started a new medicine to replace the one she stopped. So far so good but it’s only been 24 hours. We go back in February to follow up with the Hepatologist.

Thank you all for the prayers, thoughts and encouraging words.