When they opened at 9, I was the fourth caller (I dialed at 8:59 and hit send right at 9). However, they still didn't have any open appointments. I was given permission to be seen at Urgent Care. I've never been to an urgent care here. I'm nervous to go to just any urgent care with all of Jayen's past medical history and current prescription list. I had to option of waiting util 5PM for the Phoenix Children's Hospital Urgent Care to open, or use a local one. I called Matt and we decided he couldn't wait. I'm glad I didn't. I was right, Jayen's left ear ruptured and his right was "very angry"! He gave us two prescriptions; one antibiotic and one decongestant. He suggested we don't fly or go to the mountain in the next couple days. SHOOOOOOT! We have tickets for the North Pole Experience on Friday. I've been waiting for this for months. We've been telling the kids they have to be good to see Santa on Friday. I can't take that away from him. Now I'm nervous! We talked out a game plan and think he should be ok if we attempt it. I guess I will watch him closely the next 48 hours and see what we can do.
This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Wednesday, December 16, 2015
On a scale of 1 to 10? He's always a zero!
We've always laughed at Jayen's incredible pain tolerance. I've tried to explain to doctor after doctor or nurse after nurse, when they ask on a scale of 1 to 10 what I thought his pain was. HAHAHAHAHA, well last night we put Jayen to bed as usual. He laid down as well as normal, but woke up an hour later and wouldn't go back to sleep. After a few more hours of getting out, us putting him back, begging him to stay in bed, putting him back in bed, demanding he stay in bed, and finally agreeing he could sleep in our bed only for him to toss and turn all night long. Finally at 3AM I tagged Matt and went to sleep on the couch. He's had a bit of a runny nose, so when he didn't sleep at all and is a bit sick I put school on high alert. I had Jayen's para have the SPED teacher call me. As I was kissing him goodbye I noticed his ear was full of discharge. My heart sank. I knew right then exactly what was going on. I'm not a doctor, but I'm getting good at this stuff with Jayen. I believed his ear ruptured last night. He was in pain because of the pressure in his ear, but didn't show pain. I'm guessing it finally ruptured around 3AM when I went to go sleep on the couch. Matt said he slept great after I left! He woke up and acted normal. I was nervous that his threshold for seizures was so low, but not that I thought he shouldn't be at school. I don't know that I would have gotten him ready for school had I saw that earlier. They were also very nervous, as I would have liked them to be. When Ms. Hess called and was more concerned that I wanted her to be, we agreed that I would come get him. It was better anyway. If I was going to get him in to the doctor then it would be easier to have him home.
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