Thank You

First of all, Mike and I want to say "Thank you" to all of you who have supported us through this very difficult time. Words cannot express our gratitude. When we got home late last night Mike and I read your words on the last few posts with tears in our eyes. Thank you for your words, your encouragement and especially your prayers. We believe that Savannah was so blessed, as were we by the many prayers in our behalf. Thank you. And thanks to my sister Jenny for just doing the blog and posts without even asking. It was nice to have all of your encouragement.

On Sunday around 3:15 pm Savannah had her first seizure. She had just got up from her nap and was her usual self. I noticed that she felt a little warm, nothing too serious but I knew even without checking a temp that she had a slight fever. She was playing and then came to me and laid her head on my chest and started making strange swallowing noises. I looked at her and knew she was having a seizure. I called for Mike. When she finished I gave her Motrin figuring it was a febrile seizure and it would pass. She didn't look at me, she didn't cry and was very flaccid and weak. I was hoping she was just post ictal when she started to seize again. We called 911 and the paramedics arrived. Her sats were initially in the high 70's, but jumped quickly to 92. They put her on blow by o2 and transfered her to the ambulance where she continued to seize. They had a hard time getting an IV line in (everyone did, even the special IV team at Children's). When we got to the ER about 10 minutes later everyone started working on her immediatly to stop the seizures. The gave her 2 mg Ativan and then had to follow it up twice with .5mg more each time just to get them to stop. After they stopped she was given Dilantin (anti seizure med) loading dose. She had her eyes open the whole time, they were just looking up and to the right. When they noticed that her left pupil was larger than the right I just started to cry. You would think a little bit of medical knowledge would help in these kind of situations, but in reality it just made it so much worse. I have seen people with hypoxic brain injuries, people who have serious long term effects from incidents just like this. I was just so scared, and felt like I would never see my little girl again. My mom talked to me at this time, and after we hung up she and my Dad decided to get in the car and drive down. They will never know the amount of relief I felt when I heard they were coming. I love them so much and will be eternally gratful that they did this for us, without me even having to ask. Thank you so much!

A CAT scan was done, without contrast so is wasn't something that could show brain function but they were able to see that there was no mass (huge relief). Then they decided to ship her to Rady Childrens Hospital in San Diego. Now that her seizures were controlled they felt she was stable enough to move. Her sats were stable but they considered intubating her for the transport. I am grateful they did not have to, I am also grateful that they felt she could go 20 minutes by ambulance instead of by life flight. Rady Childrens Hospital is apparantly one of the top hospitals in the US and they sent a transport team. Resp. Therapist and a life flight nurse for the transfer. When we arrived at their step down ICU she had 2 more seizures and they gave her another 1mg of Ativan. They then did a lumbar puncture. They wouldn't let me stay in the room, even though I begged. Afterward the nurse told me that even though Savannah wasn't responding to anything at all she did cry a little and try to squirm away during the proceedure. Even though I don't want her to hurt, this was really good news that she was responding to painful stimuli. It was a tough night to say the least. Mike took the kids back to the condo and so I was alone with my thoughts and fears. Savannah had one more seizure, the last one at 11:30 that night. The seizures escalated with each one. The last involved her whole body. My parents arrived to the condo at 5am the next day, slept just a couple of hours and then sent Mike to be with me while they watched the kids. Because of the swine flu, the hospital was on lock down. No one except parents could visit.

The next day she had an EEG in the morning which was normal and an MRI that afternoon which was normal. I was so relieved to hear that, and kept hoping she would start to wake up. That evening she started to open her eyes, and started to cry. What a beautiful noise! She still wouldn't look at us, but wanted me to hold her. That night she had 2 really bad fits (lasting about 4 hours total) that she was totally inconsolable. She would writhe around on the bed, hit me, scratch and scream if I tried to hold her. I was worried it was the medication Keppra that she was on but the neurologist felt she was just coming back after the seizures. The neurologist said that it would probably take at least a week for her to get totally back to herself, and that left untreated this could have caused death and it was so important that she stay on these meds for 6-12 months.

They never could figure out what caused this, although they all agree that Savannah probably has a seizure disorder. They won't clasify it as epilepsy yet, but we are all watching her closely. What occured is called Status elipticus. Meaning she had a seizure that lasted more than 30 minutes. On Tuesday evening she was discharged, they really wanted us to make it home on our flight and follow up with neurology here. Right before discharge she started holding up her head on her own, started to look and focus on me. Yesterday at this time she started to walk a little bit. Right now she can walk but she is still pretty unsteady. Personality wise, she is more irritable, and doesn't seem like herself but I keep seeing little glimpses of her every once in awhile. When I met with the Neurologist here up at Primary's today he assured me that although she is taking longer than usual to get back to baseline, he was optomistic that she would totally return in about a week. We hope and pray that he is right. I am so grateful for all of you, sorry for the rambling post, I just wanted all of you to know what happened and where we are now. Thank you, we love you all! Our prayers were answered and I thank my Father in Heaven for being mindful of our little family.