interesting day

Plans to go birthday shopping and hit the beach with Grammy, Ivy, Jess, and myself. Jess had other plans she had a seizure in car, a trip to ER, it wasn't sodium related so they discharged us home. Chicago in am for ROHHAD studies maybe they'll have some answers about whats going on with her.

Florida

Well we moved to Florida in June to a beautiful house. Jim and my father in law took up carpet and put tile through out most of the house, all the common areas. Jessica started school and i go with her everyday to monitor her status. We got medicaid and now I'm in the process of trying to get nursing none of this is made easy. Its hard because I'm in school with Jess all day so when i call them and usually leave a message when they return the call I'm back at school. Lots of phone tag. We have seen all the new Dr's and started counseling to help with adjustments. supposed to be going to Chicago in October just waiting for the OK. All in all things are moving just very slowly. At least we have only had little illnesses nothing big since we came down.

Well on 3/21 Jess had a staring spell on the school bus at the end of our driveway. She didn't respond to anything she woke up in the ambulance on her way to the hospital 1-1/2 hr after it all started. They did labs and her sodium was OK, so they admitted her and monitored her sodium as well as a 24 hr EEG and an MRI where they found nothing. They think she may of had a partial seizure but are not going to medicate because of all the side effects and there not sure that's what is happening. They discharged her on Thursday no change in orders just continue to monitor and return to ER for any problems.

Well finally got the trilogy for Jess and it alarmed the first night every minute saying apnea i called our resp guy Friday we made some changes and Friday night went well with the vent. Now the CO2 monitor is not working right. thank god we have one we can spot check her during the day but the one that is supposed to hook up to her at night while shes on the vent doesn't work right only works about 1/2 hour than quits. Her temperature has been bouncing all over from 95.0 up to 103.5 no rhyme or reason, heating blanket when low. i have to call ped and get orders for when it goes high. The new thing is now shes been breaking out in hives for no reason just complains on being itchy and when we check she has hives and we have to give her benadryl than shes off to sleep.

seizure

Well on Monday Jess had a seizure at school. They called to let me know she had a 20 min seizure and was on hour way to the hospital by ambulance, I met them there. Jess was babbling and yelling but not responding to us when talked to, like she was looking right thru us. After many hours in er we found out her sodium was only 122 and they believed that's what caused the seizure. We were transferred to the floor than transferred to another hospital that had a PICU. We arrived 2am in the morning her sodium dropped further to 114. They hung a sodium drip and we waited for her to wake up it was 28 hours and she woke for 30 second shrugged her shoulders in response and went back out for another 12 hours. Than finally when she came out of it and woke it took another day for her to fully mentally return. We were supposed to go home today but now the sodium is to high and we have to stay till it comes down. I've never been so scared of losing my baby. Now I'm hoping we can figure out how to control the sodium.

new symptoms

Spoke with ped today she called Chicago and they said the bradycardia and hypothermia show signs of the rohhad progressing and now is a time she needs to be watched closely because the autonomic dysfunction is escalating which could be detrimental. They suggested a 72 hr holter monitor they think she may need a cardiac pacer. She is scheduled for monitor on Wednesday at 9am and they will talk to us about AED. Cardiologist will read monitor results We now have orders to put heating blanket on if temp below 96f and take off when she reaches 96f. School nurse was notified of changes and Jess does have her own nurse as well. Hope to prevent any problems.

Jess was in ER for hypothermia a new symptom were dealing with, she went in with 90.2rectal and they discharged her with 93.3 rectal they had difficulty getting an IV started and a really hard time getting blood to make sure she wasn't septic. blood came back OK a little low sodium and blood sugar better than most test. because they were only going to use a warming blanket the DR and i agreed to discharge her home to comfort where i could use the warming blanket at home were still dealing with the hypothermia on and off but its something we have to deal with because its part of her syndrome. we will make it through because shes a fighter as well as i am.