Thank you all for your prayers! We are indeed blessed. Sparrow is doing well. She has been seizure free since Saturday!! Her EEG was normal, as was expected. She had a busy day yesterday with tests and seeing her Neurologist. She will have an MRI in July and we'll get the results later that month. Before you call me worrying that it's too far away, let me assure you... It's okay to be scheduled that far in advance. It gives Sparrow a chance to adjust to her medicine, get over any residual effects from the seizures and Husband has off the day of the MRI. It's not a fun test for her or for Mom and Dad to watch so it's best that it's a 2 parent day without Husband missing more work. It also gives her brain that many more days to build up the fatty brain tissue that makes an MRI clearer and therefore more accurate to read. Sparrow has some great Dr's and specialists who work for her and we're really thankful for that. We are just taking it easy today and trying to catch up on sleep and establish a new routine. She is taking a nap as I am typing this. She is quite wobbly and falls more often. She is mouthing her hands and staring. She is much more hyper before crashing to sleep, just generally more moody. She is normally such a mellow little girl that her behavior now is probably more typical of the average toddler. These changes could simply be after effects of the seizures or they could be side effects of the medication. Either way they will most likely resolve with in a few weeks time.
For those of you who are questioning my parenting skills in reference to putting this "sensitive" material on the Internet...I am doing this for several reasons. My family is scattered all over the country and my friends are spread throughout the world so instead of taking precious time away from Sparrow by explaining the same thing multiple times, everyone can be aware and updated quickly and without taking time away from her. It's also very good for me to document everything that she does before the memory fades, it's better for the Dr's that way - a great example of this is that we didn't see her neurologist until yesterday and since I had all the details here, I didn't have to question whether my sleep deprived, information overloaded, adrenaline saturated brain remembered every detail because it was right here. Finally, I know that other mom's may someday suffer through this with their little ones and they may need to see that it's not anything to be ashamed of, and that they are not alone. If you are that mom then you need to know to trust God in this. None of it is a mystery to Him. Run to Him for comfort and seek Him in prayer and in His word. I've taken some time and prayed for you, your children and your medical team, so you've already got at least one person praying for you. It really helped me to get on YouTube and watch other babies have tonic clonic seizures, you get an idea of what's "normal".
Thanks again everyone, I'll post anything new that happens in the mean time - walk with God.
Wednesday, June 29, 2011
Sunday, June 26, 2011
Sparrow is having seizures
Friday Sparrow didn't eat anything at all. I mean she refused all food. She woke up several times in the night. 5am yesterday (June 25, 2011) Husband got up and assuming she was fussy because she was hungry, he gave her milk. At 6 she was crying and he was going to get her up for the day (he's good to me, lets me sleep in anytime he's home). But she had thrown up. (this was likely after she had slept off her first seizure) I got up and gave her a bath she seemed fine. We decided she should sleep more but put her in bed with us. we all slept and Husband and Sparrow got up about 9am.
She has been a little constipated so when I got up (10am) he went to get some apple juice at the store. while he was gone I called my mom and Sparrow 'talked' to her. I then gave her about 5 baby spoonfuls of yogurt and another 2-3 of applesauce. I returned a call to my friend and while talking to her Sparrow (she was seated on the floor) fell over slowly onto her back. I ran to her but she had rolled to her side and was having a tonic-clonic seizure. It seemed like she would throw up so I picked her up and held her face down. She was still seizing. She threw up, when she was finished I laid her down and just gave her room, at this point I hung up on my friend (I had thrown the phone to the floor but not hung it up. This was an “old fashioned” landline), called Husband and told him to come home, and called 911. I had them on the line and she was beginning to relax. She turned blue, I carried her closer to the sofa so I had more light. I was still on with 911. She began to get more pink and eventually they hung up. 911 called back almost immediately and said they were 60 seconds away. Husband came in then and said they were outside. I took her out to them, she was asleep and really hard to arouse. She was fully awake when we got to the ER but still slow, clingy to anyone that held her.
No fever, no signs of infection. Blood tests were normal. They gave her iv fluids as a precaution. She signed that she was hungry so I gave her 2 packs of graham crackers and a little apple juice. One of the Dr's came in and asked how she was. I relayed what she had eaten. He asked if she had anymore episodes, I looked down at her and she was starting to seize, she threw up then turned blue same as the first time. Our neurologist office on call Dr told them to start her on keppra. They admitted us and the on call neuro will see us tonight or tomorrow. The general Dr for the peds unit said that most likely they will find the minimal amount of the keppra that works and keep her on it for 3-6 months, then try to see if she can be without it. Oh, her O2 sats would drop when they tried her on room air so she was on 1 liter of O2 for a while but that's all stable now and she is keeping her oxygen up on just room air.
My cousin T. is driving up tomorrow to be with us so that's a comfort. I'll update as we go along.
Thanks for all your prayers!!!! Husband and I really feel attacked. First that money issue. Then his car permanently broke down and we had to get rid of it,(Thursday) now this. But our God is an awesome God, He reigns on Heaven and Earth and He will help us through this. It's strange to have a sweet peace through this.
She has been a little constipated so when I got up (10am) he went to get some apple juice at the store. while he was gone I called my mom and Sparrow 'talked' to her. I then gave her about 5 baby spoonfuls of yogurt and another 2-3 of applesauce. I returned a call to my friend and while talking to her Sparrow (she was seated on the floor) fell over slowly onto her back. I ran to her but she had rolled to her side and was having a tonic-clonic seizure. It seemed like she would throw up so I picked her up and held her face down. She was still seizing. She threw up, when she was finished I laid her down and just gave her room, at this point I hung up on my friend (I had thrown the phone to the floor but not hung it up. This was an “old fashioned” landline), called Husband and told him to come home, and called 911. I had them on the line and she was beginning to relax. She turned blue, I carried her closer to the sofa so I had more light. I was still on with 911. She began to get more pink and eventually they hung up. 911 called back almost immediately and said they were 60 seconds away. Husband came in then and said they were outside. I took her out to them, she was asleep and really hard to arouse. She was fully awake when we got to the ER but still slow, clingy to anyone that held her.
No fever, no signs of infection. Blood tests were normal. They gave her iv fluids as a precaution. She signed that she was hungry so I gave her 2 packs of graham crackers and a little apple juice. One of the Dr's came in and asked how she was. I relayed what she had eaten. He asked if she had anymore episodes, I looked down at her and she was starting to seize, she threw up then turned blue same as the first time. Our neurologist office on call Dr told them to start her on keppra. They admitted us and the on call neuro will see us tonight or tomorrow. The general Dr for the peds unit said that most likely they will find the minimal amount of the keppra that works and keep her on it for 3-6 months, then try to see if she can be without it. Oh, her O2 sats would drop when they tried her on room air so she was on 1 liter of O2 for a while but that's all stable now and she is keeping her oxygen up on just room air.
My cousin T. is driving up tomorrow to be with us so that's a comfort. I'll update as we go along.
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| as of 7am she is sleeping peacefully in the hosp crib surrounded by a seizure bumper - looks like baby jail! |
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| sorry this is blurry. top # is her heart rate, middle # is her sao2's, bottom is respiratory rate. (all stable now!) |
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