Tuesday, May 19, 2009

Pictures of Alex

Taun just emailed these pictures to me. They are the only pictures we have from Alex's hospital stay. All we had with us was Taun's cell phone. His head is wrapped to help the EEG leads attached to his head for the 24 hours. He was heavily sedated in one or more of the pictures and I wondered if he would ever be normal again. He is doing much better now and he is adjusting very well to being on medication. The Keppra-rage is mostly gone and we are so relieved to have our happy little Alex back. Thanks to all of you for your phone calls, prayers and support. We love you all and hope all is well in your neck of the woods.

Thursday, May 7, 2009

We're Home!

Don't have much time but I still wanted to update and Taun is not home to check for grammar so bear with me. We came home on Tuesday and Alex is making huge progress every day. When we came home he could still not walk or talk. He was still so drugged and wiped out. I am staying home the rest of this week to be with him and watch his improvement. As of today, he is walking and signing some things. I will know that he is 100% normal when he starts getting into mischief (ex: drinking from the toilet, smaking his brother, etc...)

He is on an anti-seizure medication called Keppra. They say that sometimes people who are on Keppra can get Keppra-rage. We have seen it and we don't like it. Hopefully his body will adjust to the medication and the rage will go away. He will be on Keppra for a year and then they usually taiper them off of the medication and see how they do. They also gave us Diastat to give him incase of a breakthru seizure. Without insurance, 2 doses cost $700. Thank goodness once again for insurance. I pray we never have to use it but I am glad we have it on hand incase it does happen.

Thanks to all of you for your thoughts and prayers on Alex's behalf. I am so grateful for the Priesthood and all of it's many blessings.

I will post more of the details later.

Sunday, May 3, 2009

What is PICU?

The Pediatric Intensive Care Unit at Primary Children's Medical Center. Why do I care? Because that is where I am right now. Here's the story: Friday at 3:30 p.m., I am just chatting with some co-workers after a faculty meeting and my cell phone rings. It is Taun so I answer because I was interested to find out how the boys were doing (Alex was quite sick Friday morning, vomiting and really lethargic, so Taun stayed home with them). I answer the phone, and Taun says, "They are taking Alex to the hospital in an ambulance again." I run to my classroom as fast as my pregnant body will move and then to my truck and speed home. I was almost hyperventilating when I got home. I saw the ambulances and police cars at my house. I get in the ambulance and ride to the hospital. Alex had another seizure. He started playing; so Taun thought he was getting better. He laid down and shortly after let a blood curdling scream, tightened up, started shaking, his eyes were rolled back and he appeared to stop breathing. Taun called 911 and they took him to the hospital. We were in the ER for about 5 hours while they ran all the tests and x-rays (chest x-ray, blood work, rsv test--big tube shoved down nose, squirt stuff in and suck it back out). Everything looked normal so they released us (about 8:00 p.m.) and we went to get Benjamin from JeriDawn's house. Taun went in to get Benjamin, and I stayed in the car with Alex. About 6-7 minutes later I hear the same blood curdling scream, and I look back to see my baby tight and shaking with his eyes rolled back. Again, he appeared to not be breathing. I jump out of the car and scream for Taun. JeriDawn calls 911 and they Ambulance takes him back to the hospital.

The hospital kept him overnight. He started having seizures again at 4:00 AM. By his time, Logan Regional Hospital decided to transfer him to Primary Children's. He continued to have seizures every 40 minutes, in the ambulance on the way to SLC. By the time we reached Primary Children's he was having seizures every 10 minutes or so. He was given two or three different anti-seizure meds and taken to have a CAT scan. It revealed nothing was majorly wrong with his brain.

It is Sunday night and thus far he has gone through a lumbar puncture, E.C.G, MRI and continuous blood tests. He is a little more alert and not having seizures. By tomorrow he should be out of the PICU into a room in neurology.