31. January 2009 by admin.

Dr. Mangano came in an spoke with us today. We talked about the surgical options that will be presented once they capture a seizure and can prove nothing is coming from the right side. If they can get one she will be able to go to the OR on Friday. We talked about risks of anatomical vs. functional hemispherectomy and the risks of Sarah having so many surgeries within a years time. I think what I am most afraid of is all the data being reviewed and then coming to us and telling us that there is nothing they can do and surgery wouldn’t help.

James Chapter 5
10Brothers, as an example of patience in the face of suffering, take the prophets who spoke in the name of the Lord. 11As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.

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30. January 2009 by admin.

Everything thing is the same. She has not had any seizures yet. She is having a lot of the coughing which we believe is coming from the brain stem since it is not showing up on the EEG. We were attempting to get her home this weekend, but she is on IV nutrition and that is making it difficult. Dr. Mangano spoke with Kim yesterday (finally). He told her that if they get what they need he would like to have in her in the OR next Friday. Please pray that they get what they need and there is a way to stop what is going on with Sarah. She would like to get back to moving on with her life.

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29. January 2009 by admin.

Sarah had a small seizure today. It was a staring spell. Not what the doctors are looking for, but they went ahead and hooked the EEG leads up to her so they will be ready.

Someone went outside and got her some snow to play with, so she won’t miss out on winter fun. 

Sarah playing with snow

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27. January 2009 by admin.

Well Sarah hasn’t had any seizures yet, so we are now in a waiting game. She has been taken off all of her seizure meds. Hopefully for good. Kim and I decided that if she doesn’t have any by Friday we will bring her home to wait for them. She is having a swallow study done today just to rule out any swallowing issues that would cause her to vomit and cough like she has been. The doctors are sure that isn’t the problem but they need to rule it out.

I got to spend last evening at the pediatrician until 10:30pm with Logan who has strep throat. Ava seems to be mostly over her cold. Just a residual runny nose.

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27. January 2009 by admin.

The plan for Sarah was given to us today. Dr. Lee still needs to capture a seizure on an EEG. They have stopped all of Sarah’s seizure medications and will wait for the seizures to start again. She will stay in the hospital for a few days and if we don’t see any by the end of the week we will probably take her home and wait. I guess everything that they have captured on EEG, PET, or MEG scans have been different and not originating in the same place. So her eye twitching, coughing, arm/shoulder trembling doesn’t seem to all start at the same place. I know it is confusing. I guess the best way I can say it is that all the data they have collected on her is inconclusive to pinpoint where possible connections may or may not be. They need to get a few full blown seizures on an EEG. After that there will be decisions on what will be done (Surgery).

Bottom line is that she will probably not have surgery this week. The steroids they gave her have held the seizures at bay so she had a good weekend. We have to wait for those to wear off too. We hate that her life is on hold again, but we would rather get the right answers over just fast answers.

Well besides what is going on with Sarah, her brother and sister are both sick too. There’s nothing like a pile on.

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24. January 2009 by admin.

We had long discussions with two of the three main doctors today. Dr. Franz wants to do an anatomic hemipherectomy, which means they would go in and remove the left hemisphere completely. Dr. Lee wants to do a functional hemispherectomy. You might be asking yourself the same question we asked. Didn’t she already have a functional hemispherectomy? Apparently she had a functional hemispherotomy. They explained the difference. I would type out the difference but I don’t have enough time.

Before any surgery is done the neurosurgeon (Dr. Mangano) wants to make absolutely sure that her right hemisphere is not responsible for any seizure activity. There are a couple ways they suggest finding out. One way would be to take her off all of her seizure meds and wait for the seizures to start up again and then scan her. The other is to go into the OR and make a small hole in her skull and put strips on her right hemisphere and record activity for about twenty minutes. If there is no seizure activity then they would go ahead and do a functional or anatomic (which ever is decided) hemispherectomy. Dr. Lee does not want to do the anatomic one because it can cause serious complications down the road. Dr. Franz wants to do the anatomic one because then you are absolutely sure there is no connections left. Our friend Jesse Hall had an anatomic hemispherectomy.

Bottom Line is that all three of the doctors are supposed to meet on Monday or Tuesday and then they should come to us with a plan which we can accept or reject. The real bottom line is that Sarah may not have surgery until late next week or the week after.

I will let you know more when I know more. Please keep praying that the correct path is made clear to us.

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22. January 2009 by admin.

They did a PET scan, EEG, and MEG today. We still haven’t seen the surgeon yet. It is making us a little upset that he hasn’t even stopped by to see her.

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21. January 2009 by admin.

They had to give Sarah valium this morning so she could rest from the seizures. What is going to happen is they are going to have to go back in and remove the disconnected hemisphere. What they believe is happening is that the bad side is sending seizures down to her brain stem and they are coming back up the other side.

She should have lesser risk of problems after this surgery since that hemisphere has already been disconnected. They are trying to get her into the OR as soon as possible. We are hoping for tomorrow (actually i wouldn’t mind if it was today).

I will keep everyone posted when I get a day and time. Please continue to pray for Sarah.

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20. January 2009 by admin.

Sarah is having seizures all day long now. We are hoping to hear from her doctors tomorrow or Wednesday. We are guessing that she will be back in the hospital within the next couple of days. This turn of events is an enormous let down. After she made it through such a crazy surgery we truly believed that we would never see another seizure from her again. I almost feel like it was all for not. The seizures are lasting longer than the ones she used to have and they are causing her to gag or vomit. I am so frustrated right now that I am having a difficult time talking or even writing about what is going on. I don’t mean to come off like a jerk. I am just in a bad place right now. I have been sitting in the house next to Sarah watching her have seizure after seizure the last four days. I hate that this is coming out like self pity. I am just worn down mentally. It feels like I am drowning.

Enough pity party for me. I will keep everyone updated as much as possible. Please continue to pray for Sarah. She doesn’t deserve any of what is happening to her. She doesn’t complain.

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18. January 2009 by admin.

Well Sarah is home, but doing no better. She is having quite a few seizures now. There is vomiting following the seizures, so it is hard for her to keep food down. The doctors are going to put their heads together this week and try and figure out where these seizures are coming from and what we can do about them. Since Sarah only had a functional hemispherectomy they may suggest the she have the bad tissue removed. I would hate to put her through another surgery but if it ends these seizures once and for all, I would have to be all for it. It would put her out of commission for a while, but I wouldn’t think that it would cause anymore deficits.

I guess I have to retract part of the last post where I was thinking that the episodes she was having were not seizures. We got to see a seizure that we normally wouldn’t. The infrared camera at the hospital showed Sarah waking up in the night having a seizure that looks totally different than the ones we see during the day. None of them are showing up on the right hemisphere, but that is the only comforting news we received so far.

Sarah did lose her other front tooth while she was in the hospital, but she didn’t swallow that one.

Please keep praying for Sarah.

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