Wednesday Charlotte had to give Jude some Valium because he was so rigid and cranky. So I began to wonder if he was starting to get under the weather.
Saturday night Jude started running a fever and wanted me to hold him constantly. I informed our weekend nurse on Sunday morning that Jude was running a fever over night and we had gotten very little sleep. As I staggered back to bed and covered myself with my blankets the nurse came to my door in a panic.
Nurse: Jude's heart rate is at 219!!!
Me: Ok well let's evaluate this
Nurse: I just... I mean I know I need to call when it's that high (he was very worried)
Me: This happens with Jude
So I start looking at the machine running things through my head.........pulse ox: 96, heart rate: (now at) 186. Fever: Axillary 102.2 (so 103.2). Cheeks are flushed and skin is dry/flaky, urine is dark. I immediately start rationalizing things in my head. I know you can't always trust the pulse/ox machine...especially with a seizure patient...but it's probably pretty accurate. So then I start wondering if the dark urine and chapped lips are due to dehydration from the fever or if we are dealing with a kidney issue. I noticed that his nasal area is swollen near his eyes and he winced when I touched his ear.....hmm possible sinus/ear infection? I took out a stethoscope and listened to his lungs.........hmmmmm clear up top for sure.........bottom lobes sound a little diminished........could be respiratory. I ask the nurse to draw up some Motrin. I feel if we get his fever down his vitals will stabilize better. I also asked him not to administer the abuterol because it wouldn't be a good combination with a high heart rate. I explain again that Jude does this sometimes and we have learned not to panic right away. Poor nurse.....he isn't used to this with Jude. Charlotte is a pro but she deals with Jude being ill about every 3 months.
So we give him the Motrin and I woke Mike up and sent him to the store for pedialyte. I turn Jude to the left side and then turn off the lights. I am patting him and his pulse ox goes up to 98 and his heart rate starts coming down. When Mike got home I put 3 ounces of pedialyte in his IV and Allen poured in his food, etc. I let the nurse know that Jude needs to sleep. The sweet concerned nurse said when Jude wakes up he would give him his breathing treatment if his heart rate is down and I agreed.
I went to lay back down for a little while. I knew Jude needed to go in but I also knew this probably didn't warrant a trip to the ER and Cook's Children's clinic in Southlake probably didn't open until 10am since it was a Sunday. I also figured Jude needed the rest and we needed to get everything stabilized on him before we stressed him out moving him. So about noon we took him to the clinic. The doctor drew blood and did a chest X ray. My poor boy is going to wind up glowing from his every 3 month chest X ray. She said the blood looked like he had a viral infection, but that she thought he might have a sinus infection too. So she did prescribe him an antibiotic and instructed us that if he wasn't feeling better in a few days to take him back in. I knew she was giving us her best guess..........but isn't that what we all do with Jude? So I am hoping that the antibiotic will cure whatever his ailment is.
So we went home and last night Jude would NOT let me put him down for any reason. If I laid him down to go to the bathroom by the time I got back he was in a full on raging fit. He was just miserable. So finally about 10pm we administered the Valium and I took Jude to my bed. I asked Mike to sleep on the couch so I could be next to Jude to assure him he was okay.......that as a good decision. Jude woke up several times throughout the night, but I would lay my hand on him and he would go back to sleep. About 3am he woke up with over 104 degree fever so I gave him more Motrin to bring it back down. He slept pretty soundly then until 5-6am and he woke up crying. I soothed him back to sleep until about 7:30. Then he got up seizing and throwing up, but then he mustered a little grin. The grin made me feel like he is doing okay just having a hard time. So we will watch him for the next few days. We have learned not to panic just evaluate the situation and take it a step at a time.