The first snag in the road...

Allyson has hit the first snag in the road to being seizure controled or free. The surgery itself went very well. They resectioned what they could and left what needed to stay.

As she is waking up from the surgery, she is unable to speak or move on command. The surgeons truely believe it is temporary. The next 24 hours will tell us more.

Keep praying,

Dana

Monday Morning

Allyson has had a rough morning. We woke up around 5:00 am to Allyson having a generalized seizure (grand mal) . even an hour afterwards, she was still very agitated and her head hurt badly. The resident ordered Dilantan thru her IV. It should take about ten minutes go in. After about 1 minute, Allyson began to vomit. I made them stop the drug. She got better right away. I wouldn't let them start the drug again until someone woke up her doctor. I'm like that, you know. Well her doctor sided with me. By this time, it was about time for her to go to surgery, so we opted to wait.

She went to surgery around 7:45 am. Surgery began around 9:00 am. It will be around 4 hours till she is done.

Will let you know more soon.

Dana

Sunday Night

Sorry, I haven't blogged today. It has been busy. Lots of visitors and an evening of brain mapping. We've just been really occupied.

Monday's surgery is set at 7:30 am. It should take around 5 hours. After surgery, she will be in ICU for 24 hours. Then she will be moved to a regular room, but not the room we were in this past week.

I will update everyone as I can.

Dana

Saturday

Saturday has been pretty slow. allyson hasn't had any more seizures. We have had lots of visitors.

The Doctors have pinpointed the spot of the seizure activity to a small spot in the frontal lobe. Randy and I are being cautiously optimistic because the spot is outside both the speech and motor areas. Based on the current information, Ally's doctor believes that they can completely get rid of her seizures if they take this spot out. Again, we are trying not to get too excited yet. But the idea is exciting.

Brain mapping is set for tomorrow. This is when they use electric impulse to see what happens with that part of the brain. The hope is that nothing happens which means the section doesn't control anything (which is what they believe.)

Hospital life is beginning to wear Ally down. She is feeling better which makes her want to get up and move more. Since she is wired to the wall, moving is difficult as the I.V. pole and large heavy pouch with 72 grid wires have to travel with her. The farthest she can travel is the restroom. Randy and I get out as much as we can. One of us has to be here all the time. Randy will be at church tomorrow, so I will be here to 2:00 PM or so.

If things go as planned, after surgery Monday, Ally will be in ICU for 1 night then on 7ANorth until we go home.

God Bless

Dana

SEIZURE!!!!

Around 2:30 PM today, Allyson a seizure that leasted about a minute and a half. The neuro docs were pleased with the readings they received. This relieves some of the pressure we were all feeling, most of all Ally. If she didn't have a seizure soon, things for the 2nd surgery on Monday would begin to have to be delayed. Talk about pressure!

Ally has also been slowly dropping her blood count numbers. We have been told if they don't come up by Sunday she will need a transfusion before Monday's surgery.

She is back on track with her pain meds. They also reinforce the head bandage which has helped a lot with her pain. She is now sleeping soundly and will be for several hours.

God bless

Dana

Lots of pain today

Ally has been in a lot of pain today. For the first time she gave it a 10 out of 10. We figured out that one of the residents stopped the Tylenol she was getting every 4 hours. So unless she asked for other pain meds, she was getting nothing. Well, the nurse practitioner from neuro set them straight. I believe the statement went something like " she just had her head cut open, she should be on round the clock Tylenol til Monday! Give her a break!" Go Nurses!

Ally is really getting down. I think the pain and lack of seizures is wearing on her nerves. She's crying a lot. I'm going to get my sunday school class to make her get well cards. maybe that will help. It's tough when you can't do anything to fix the problem.

Dana

Thursday Night

Ok - no seizures yet. Ally has now been taken off all of her meds. We are hoping for a readable seizure tonight.

She has had a much better day. Her head hurts when she lifts it off the pillow. The wires pull from inside her head. She had a lot of grids put in, 72 is more than the norm. The doctors needed to be thourough because of the difficulty of their locations. anyway, she hurts but still is only taking tylanol plus she has had 3 pain pills since monday. Like I said before, I take more drugs for a hangnail. She is a trooper.

Thanks for all your cards and prayers

Dana

Thursday

Today has been uneventful. We are waiting for Allyson to have a seizure. Like any teenager, they never do anything when you need them to do it. So we wait...and wait...and wait.

Ally is in a lot of pain. We are trying to keep her comfortable. She has to stay awake during the day. She does not want to co-operate, but she's trying.

More Later

Dana

Better news

The doctors think they have figured some of the trouble out. Rather than swelling, Dr. Mangano thinks Ally is reacting to the grids as an irritation. This is kind of like when you get a pebble in your shoe. He is hoping she will be better tomorrow.

So far tonight she has been awake since 8:00 pm. Which is the most she has been up all day. If she keeps the awake time, she be back on track by tomorrow.

Randy and I are just glad there isn't really any swelling like they originally thought. Obviously, that would have been bad.

More Later

Dana

Swelling part 2

They have done the 2nd csan. There is no change from the 1st. That is good. Allyson has woke once and been very alert for around 20 minutes around 3:00 pm. Since then she has been semi-awake and/or asleep. The Neuro team doesn't seem to be in the room when she does the weird stuff, always the pediatric team or a nurse. At least we know from the csan that it is not getting worse. It could just be pressure from the swelling. They will continue to monitor it closely.

More later.

Dana

Swelling

From the beginning, the surgeons told us to expect swelling. I always assumed they meant face or head. Well, this morning, Allyson was not responding well to commands and the neuro exams. The commands are about "who's president?" I suggested asking "who's still in American Idol?" if they wanted her to get it right.

They did a csan and found what they call a "mass." From what I get from the explanation, it is slight swelling inside. This is not abnormal except that Allyson was very alert all day yesterday then went downhill late last night. the plan is to watch her till 2:00 pm and do another csan. Check the difference and go from there. The neuro checks are happening every hour instead of every 4 hours.

The long and short is she is not doing want they hoped for surgically. So we step back and fix that first then move forward with the rest. Allyson is a very determined young women who wanted this procedure very much, maybe more than her parents. She's a fighter. she will do well.

More to come.

God bless.

Dana & Randy

lots but yet nothing happening...

Things are going quite well today. Allyson is in less pain. Tylenol is all she is curently taking for the pain. Boy, do I feel like a wimp. I take more drugs for a hangnail.... She is swelling a little more this evening. I think that will get a little worse before it gets better.

She has been up twice. She needs to eat but hates soup, jello and pudding. We are trying ice cream and sherbet.

She hasn't had a seizure yet. They need her to seize with the grids in place to verify the starting spot. if she doesn't have one by the morning, they will begin cutting back on her meds to force a seizure.

We will know for sure how bad she feels at 8:00 PM tonight. If doesn't watch American Idol, we know she is really feeling bad.

God bless

Dana

Rough Nite but good news

Ally had a bad nite. They had to change her pain meds from every 4 hours to every 2 hours. the surgeons had to cut the muscle that controls her jaw to get to her brain. Every time she opens her mouth, it hurts. Even sedated, ally loves to talk. It was the first thing the surgeons told me she was doing after surgery. Direct quote "Allyson is awake and talking"

However it hurts to talk or eat. So we are going to need to get her to eat over the next few days. She will get to choose whatever she wants to eat, ice cream, pizza, popsicles, anything she wants. So at least I'm not trying to force feed her spinich.

Dr. Lee (the Neuro - specialist) visited ICU this morning. he said everything was looking great. Now we will proceed with the tests to make sure the doctors are finding the right spot.

Allyson should be in a room on 7A by this afternoon. She can then have visitors. She is still very groggy but will wake up for short periods of time.

More later.

God Bless

Dana

First Surgery is finished

The first phase of Allyson's surgery is done. They began today at 12:45 pm. The surgeons placed 72 grids on her left side. These grids will map her brain. The surgeons will know what functions the damaged portion of her brain controls. Dr. Lee said that he found exactly what he expected and was pleased with the outcome of the first surgery.

The rest of this week will be testing to verify previous information. She will be in ICU until tomorrow. Only parents can visit until she is out of ICU. She can have visitors after that. She should be on 7A by Tuesday if all goes well.

Dana

The night before...

the surgery is set for tomorrow at 12:50 PM. The time has changed at least 3 times. But we were assured this time was right. We have to be at Cincinnati children's at 11:15 am. The surgery itself should take about 5 to 6 hours. I will be blogging when I can about what it is going on.

After surgery, they will be trying to get Ally to have another seizure. this will allow the sensors that they set inside her head to verify the spot that the seizures start. Once the spot has been identified, the surgeons then begin to decided what the effected part of the brain controls.

Then the hard decisions must be made. There are some motor skills that could be affected by the resection. Randy, Ally and I will all be making the decision along with the doctors on what is worth risking (losing) in order to live a life without seizures. Example - Full use of her left pinky finger = most likely yes but any speech = most like no ...etc.

We will keep everyone updated as much as possible and call as we can.

Dana

Things are a little crazy here....

We are running a little ragged here. Friday, we got a call from the Elementary school saying that Josiah had Pink eye and we needed to come and get him right away. Normally, no big deal. You get drops. You get over it. WRONG! Not this time. If Ally gets it, she may not be able to have the surgery. This would delay everything another six months.

So Josiah has been a trooper. He has spent most of the weekend banished to our room. Not a horrible thing, there's a bathroom, tv, computer but no PS2. The drops 4 times a day are a challenge for a 7 year old but he is doing pretty good. This evening, his other eye began showing signs. So now it's 2 drops in each eye, 4 times a day. He hates it but understands he mus stay away from Ally and has to get better or he won't be able to get near Ally for a while.

Love and prayers,

Dana

First visit with actual surgeon

Hello everyone,

Today we had Allyson's first visit with the actual surgeon. There will be several doctor's involved. Up to now, the visit's have been with the doctor who has been determining the spot of the problem, Dr. Lee. He will be the one who sets the electrodes on her brain and verify they are in the right place for the set of tests that will be done between March 24 - 30.

Dr. MAngano, is the one who will be cutting. Ifeel that this pair is a little like the goodcop/badcop team. Dr. lee lets you know there is hope, good chances of life without epilepsy. Dr. Mangano comes in with the badcop routine which includes all of the risks and what could happen. I don't think Ally's chances are any less than they were before but the risks were just laid out for all to see. It just deflates the bubble a little.

Thanks for listening,

Dana

Allyson's Surgery has changed....

The neurosurgeon's office called today. They are moving Allyson's surgery up to March 24. Nothing is worse with Allyson, They just had a cancellation.

So the new schedule will be:

• March 24 - Surgery to place electrodes on brain.
• March 24 -30 - Tests to verify diagnosis
• March 31 - Resection will take place
• April 5 - release from hospital (approximately)

You can send her cards at:

Cincinnati Children's Hospital Medical Center

Floor - 7A

3333 Burnet Avenue

Cincinnati, OH 45229

Thank you for all your prayers and cards. We have all waited a long time to get to this point.

Dana Randy and Ally