Hospital Recovery

On our way home from the hospital on Tuesday, March 1, I received a call from Theo's school nurse, Amy. She was just calling to check in and see if we had made any progress. I told her we were on our way home and she was very excited! Theo's school was in session on Wednesday, but he had Thursday and Friday off. I told the nurse that I was going to keep him home on Wednesday and we were going to have a nice, relaxing five days at home. I felt like this was the best course of action for us. I could watch Theo with minimal distractions and get a good baseline for his seizure activity, which I suspected was abnormally high while we were at the hospital because of all the distractions, noise, and lack of sleep.

[Another way Theo sleeps: inbetween the mattress and the rails]

I hardly ever open my door when someone knocks or rings the doorbell (usually it's just Amazon anyways). But the other day I heard the Ring go off and then the doorbell. I glanced at the door and saw I man standing there holding something. That was unusual, so I opened the door. He said he had a delivery from Emily and Katey! And guess what it was! THAI FOOD! Apparently they texted Josh and asked what one of our favorite restaurants was and what food we liked. Thank you so much Katey and Emily! Not having to worry about dinner after a long hospital stay was perfect!

I knew this would happen, but we got an update from Holland America about our cruise. They are cancelling our two day stay in St Petersburg and are adding in an extra day in Stockholm and we are getting a day in Latvia. I was really looking forward to seeing St Petersburg and Moscow, BUT sanctions are important. Putin is evil and this war needs to end quickly. I am more worried about the people in Ukraine and Eastern Europe then I am about my vacation. 

🇺🇦🇺🇦🇺🇦🇺🇦🇺🇦🇺🇦🇺🇦🇺🇦

We are still trying to figure out when to give Theo his medication, so it won't make him too sleepy during the day. He needs his Levetiracetam (Keppra) twice a day, Valproic Acid (Depakene) three times a day, and Clonazepam (Klonopin) once a day. All of these medications make him sleepy, so timing is important. 

[Taking a power nap at 8:00 AM after getting his Keppra]

On Thursday, March 3rd, Theo and I went to see his Pediatrician. The hospital likes you to check in with your Pediatrician soon after discharge, so they can stay updated on Theo's situation. Dr Dave wasn't there, but his NP was and we love her! We chatted for a while and filled her in on everything that was going on. During the visit Theo fell asleep because I gave him Depakene before we went to the appointment. See? Gotta figure these meds out!

We got this adorable card from cousin Cason! So sweet! Thank you for thinking of Theo!

After much trial and error we have decided it would be best to give Theo his Depakene at 2:00 AM (this is why g-tubes are nice), 10:00 AM, and 7:15 PM. This way it coordinates with his sleep and hopefully he won't get too sleepy during the day.

Theo had a few great days at home. On Wednesday he had 14 seizures, on Thursday he had 10, on Friday he had 9, on Saturday he had five, and on Sunday he had three. That is definitely what we want to see! This is going to be a balancing act while we figure out meds vs seizures vs Theo functioning in day to day settings. 

[Theo's seizures usually last only 1-3 seconds, so if they are longer then that I make a note]

Theo did go to OT and PT this week and those sessions went great! Theo only had one seizure during them. So, that's a win! I'm anxious to see how Theo does at school when he is around a lot of people, noise, lights, and other external stimulus. We do have a "Seizure Action Plan," but I REALLY hope we don't have to ever use it. 

I lift weights most mornings and then do cardio in the afternoon while Theo is at school. I either cycle or run, but I don't want to get burned out. I decided to buy a jump rope and see how that goes! I was only about to jump rope for about 20 minutes before I was done. The next day my abs were really sore! I guess it is a really good workout! I need to finish my marathon running series, but once I'm done with that I'm going to focus more on jumping. Wish me (and my knees) luck!