30 days of love and support

Oh what a crazy day! We were so hopeful to be getting discharged today that we had everything packed and ready to go before Dr. Ritter even made his rounds. Today marks exactly 30 days since we left our home for the hospital. It doesn't feel like that long though. Our experience at the hospital has been so positive. We have met so many wonderful nurses, who truly are amazing at what they do. We didn't mind being in 5026! We actually enjoyed it. Jayen was loved by so many! People would stop by our room every shift, our walks were filled with people stopping to say hi, they EEG techs would play peek-a-boo with him behind the counter, he convinced doctors, PA's, neurosurgeons and so many others to get tattoos, he had people falling dead in the middle of the floor while playing guns with him. It was never a dull moment! We wanted to thank them all for everything they have done for Jayen and our family. So we bought the biggest candy jar we could find and filled it to the brim. Inside we put a picture of Jayen with the caption, "You all were too sweet! Love Jayen". We are hoping that candy lasts a few weeks so some of our friends on vacation can enjoy it when they return too.

We walked around to personally say thank you to some friends. We are really going to miss them!

 

 

 

We also had to stop and tell Ms. Olivia good bye. Ms. Olivia had grids placed two weeks after Jayen. It was so great to see her positive attitude and great spirits. It was nice to share our journey with them too. We are so proud of her at how brave she is through all of this. I hope that we can keep in touch and see where her journey takes her. We will continue to pray for her and her family. We love you guys so much. Keep positive and know that there is a plan. It might not be the same one you thought it was going to be, but there is one and it is a great plan.

P.S. I hope you stole our room when we left!

 

We did eventually get to see Dr. Ritter and get our discharge papers, and we did eventually tell everyone good bye enough times, and we did eventually get everything packed in the car; living somewhere for 30 days you really accumulate a lot of stuff. So we were ready to get on the road and start heading towards our normal life. But I kept thinking about how normal this normal life was going to be. The really was the start of a new life. A new life for Jayen, a new life without seizures, a new life for all of us. I kept thinking about a conversation Matt and I had the day before. I mentioned to Matt that Jayen is only 4. There could be a time in his life where he doesn't remember having seizures. I don't remember much, if anything, from when I was 4. Could this catastrophic diagnosis we were given nearly 4 years ago really be just a blog post from the past? Could his story, his journey, be filled with normal kid things? Could my kid soon not have to come with a set of instructions? I'm overjoyed at this thought, but so cautious. Cautious that there is still only a 60% chance that this means seizure freedom.

 

The six hour car ride gave me plenty of time to dwell on my thoughts. Not such a great idea! So I called the pharmacy to make sure everything was in place to pick up Jayen's prescriptions as soon as we got into town since we would be about an hour late giving him his meds. And of course this is where the drama started. Two hours before we were supposed to be in town they informed me that the prescription was written wrong and they needed to clarify things with the doctor. So they put a page into the on call doctor and would wait for a response. An hour later they finally heard back from the doc and supposedly had it all straightened out. It took me six calls, including back to the nurses desk of the hospital I just left, and 40 minutes standing in front of the lady at the counter giving her the death stare because my son didn't get the 2pm dose that was recommended (that's what time we left the hospital and the prescription was faxed to Bellevue and no one put it together that we would need it before we got home) and they wouldn't give me the 8 pm dose because they were waiting for the doctor to call back even though I talked to the doctor and he said he wasn't calling back. I learned my lesson. ALWAYS pick up the prescriptions from the hospital so you have them in hand when you walk out the door! NOTE TAKEN!

 

We finally arrived home around 9:30pm. The kids were still up waiting for us. I felt so horrible and will probably be yelled at by the teacher tomorrow for keep him up so late, but we had been gone for 30 DAYS! All I wanted to do was hug my babies. I just wanted to be a complete family again. It was such a breathtaking moment seeing the smiles on every one's faces. Brilyn kept following Jayen around the house. She was so happy he was home, happier he was home than me! But ever so quickly the smile was wiped off our faces as reality smacked us on the hell. Well quite literally smacked Jayen on the head. Brilyn was playing with Jayen and his thermos cup and decided to smack him on the top of his head with it. I had no other reaction then to start crying and praying that we didn't need to start driving 6 hours back to the hospital. I don't know how we are going to do this. Jayen's new life, our new life is going to take some getting used to. This is just the beginning!