Saturday, January 11, 2014
I can't believe I haven't posted in about 6 months. Well, actually I can because the last 6 months have been a little wild. We have been in the process of trying to get Samantha in a program that would allow her to have a nurse. I am not sure if I have been more stressed out with the process or the increase in seizures Sam has had in the past 6 months. She is now averaging a big Grand Mal seizure once every 2 to 3 weeks with smaller seizures in between. She currently takes 3 meds to control, seizures twice a day and has two meds for emergency purposes. Sam had a seizure that lasted about an hour back in September that kept her in the hospital for several days. During that time we had an EEG on her constantly and even though she didn't have any other seizures that week, she had frequent spikes in epileptic potential. 90% of her large seizures have happened while she has been asleep so needless to say she doesn't sleep alone anymore. I think I was finally getting comfortable with seizures or actually comfortable with the emergency plan of what to do while she was in one until this weekend. She had been asleep for about a half an hour when she stared. We instantly gave her her the first medicine and were waiting the five minutes to start the next if it didn't stop it. After 10 minutes and both of her meds she was still seizing. She threw up and started gurgling. We had called EMS when she stared and were still waiting for them to arrive. We almost started CPR because she was really struggling to breath. I don't think I have ever been that scared in all of my life. Gwen was at the house and was very upset by everything that was going on. I can't even imagine how hard it must be for her to watch and hear her sister going through this. We took her to Baptist by ambulance. I can't even begin to tell you how I never dreamed I would ride in an ambulance this much. They did a CT scan and an MRI once again to see if there was a change in her shunts or her cyst. (Her last was in November.) We had been there so many times that we know the techs by name and know about their families. I am so thankful for the excellent care we receive at Brenner's. After everything checked out ok they sent us home about 4 in the morning last Sunday. Since that time I feel like I am at my breaking point. I just keep seeing her struggling for breath and starting to change color. My emotions are all over the place and I feel like I just can't get it together. I have tried to remember my blessings in the past few years and to live each day in thanksgiving. It is not that I have not been thankful is week. I really have because God was watching over Sam Saturday night. It is just like my nerves have just gone haywire. I know it will get better but it is just a little harder for me after last weekend. We did see Sam's neurologist this week and we are starting to change one of her medicines this week along with upping another medication to the maximum dose for her size. Please pray that this new combination of medicines will control or at least help lower the strength of her seizures. I have been told this could be a long process to find the right combination but I am not sure I can take any more nights like last Saturday for a long, long time. Sam is such a blessing to us. She askes for "fireflies" daily which are butterfly kisses. She knows her colors, recognizes most numbers, counts, is pulling up to the couch on her own and is doing countless other amazing things. I just want the very best for her and don't ever want one of these to change her. I am so thankful for my family. God knew what he was doing when he gave us Gwen first. She wrote on a paper for school just a few weeks ago that she wished she was a special needs kid so Sam wouldn't have to go through all that she goes through. I have often told her that God knew Sam needed a big sister like her. On a positive note Sam finally has nursing care during the day even though it is not completely set and steady yet we have got her in the program. I can't thank Sam's "other mother" Melissa for looking after Sam since she was born for me. She is such a Godly woman who stuck with us through months of scary seizures and you will forever be apart of our family. Any prayers you can send our way would be appreciated more than you know. Thank you for always praying and supporting our family. God has blessed us beyond measure with all of you.