Monday, June 30, 2008

Third time to try and update!

Surgery is over and Brenna is doing great. She will have a few days of struggle and pain. Thanks for the prayers and keep praying...will update more later!

Surgery is over!

Hey all just a quick note to let you know Brenna is doing good. Surgery went well and she is on the road to recovery. Thank you for all the prayers and we ask that you keep praying for her so that her next couple of days will go by quickly and she will continue to be strong. Doctors were in and out in a quicker time than expected.

Will update more later - God is good, all the time!

Surgery! (Just a brief update.)

Well Brenna went in this morning about 7 a.m. (right on time) and the Doctors said it would probably last til noon or one. We were called in to the ICU about 12:30! They were done and she was out of recovery and into the ICU. We have been with her throughout the day (it is almost 5 now!) And she is recoving slowly and painfully, but things went as planned. We will give more info. later - just wanted to drop a quick update!

Thanks for all the prayers...keep praying she will have a rough couple of days. She is quite the trooper!

God is an awesome and amazing God. HIS grace and forgiveness are as shocking as HIS healing power!

Sunday, June 29, 2008

King Clarke :)

It is a strange day. It makes the week seem so long and out of the ordinary when we don't attend FCC back in Cleveland. But a church is a church, wherever you are, even a hospital room. Brenna and I just finished singing a few praise and worship songs and she just drifted off to sleep. David went down to check out the service they announced they were having in the chapel. He heard it announced over the intercom and was interested in seeing what it was all about.

We got a text message that church back at home was really good and there was a baptism. God is so awesome!!

We did a little arts and crafts this morning and Brenna made a crown for Dr. Clarke. He came in and she presented it to him. He was very tickled and I took their picture together. He's a very happy, joyful guy. No wonder Brenna likes him.

Saturday, June 28, 2008

Action Shots

They brought a therapy dog by to say hi on Thursday after her test. His name was Connley and he loved Brenna - and she loved him too.
Dad and Brenna in the playroom on Friday. It's good to see her smile. They gave her a little backpack to hold her ponytail wires in so they wouldn't drag the ground. It was still pretty heavy. No wonder she got tired so quickly!

Layin' Low

We did get to go to the playroom for a while yesterday. We played a little bowling but her legs got tired, so then we let her shoot baskets while Daddy and I got the rebounds. She sat in a chair with a basket full of balls and shot them at a small goal. She enjoyed that for a while and then her arm gave out, so we played "Trouble" and then painted for a little bit. In all, I think we were out of the room for about an hour before she was totally exhausted and had to go back to bed.

The anesthesiologist came in and asked a few questions and said that she's scheduled for surgery Monday morning at 7:00. Hopefully all goes well and we won't be delayed again. I'm just so ready for it to be done and for her to get all those wires out of her brain!

Last night she had a little trouble going to sleep again, so we did a hidden-picture book for a while until I thought I might go cross-eyed. Then we listened to Chris Tomlin and Hillsong music to help her relax. She finally fell asleep and then slept pretty well through the night.

Today has been pretty much the same as yesterday. Uneventful - which is a good thing. I'm kind of concerned because they unhooked her again but she doesn't want to get out of bed. She's slept more today too and just been kind of down. Of course, a lot of that might be all the meds. They've really got her loaded up with the seizure medication and that can cause her to be pretty grumpy besides the fact that she has a hole in her head with hundreds of wires coming out. That would be enough to make any normal person a little bit on the grouchy side. Maybe after she wakes up she'll feel like moving around a bit.

As for me and David, we've about finished an entire Sudoku book and are eating way more than we should. It's not that we're hungry - it's just that eating out of boredom thing. But, I'm getting a lot of Bible reading done. That's a good thing. I should probably work on my Sunday School lesson, but I just can't get into that mindset right now. Oh well, maybe next week.

Friday, June 27, 2008

Brave Brenna

This is our girl with all the wires. They wrapped them in red coban (like sticky ace bandage) to keep them from tangling. Isn't she a brave little soldier?

Visitor from School!

Yesterday afternoon Brenna got a visit from the counselor at her school in Cleveland, Mrs. Litrell. She had called and said that her husband worked for the airline and if possible she might fly out and visit if Brenna felt up to it. So, she flew in yesterday and brightened Brenna's day. It was good for her to see a familiar face and I know it made her feel special to know that a teacher came all this way just to see her. She brought Brenna a joke book - which she loved. She always wants to tell jokes and sometimes makes up her own. Mrs. Litrell stayed for a couple of hours and then left for home. We were thankful that she took a whole day out just to come and cheer up our girl. It really meant a lot to us.

During the afternoon, they did the speech mapping of Brenna's brain. I had no idea that it was going to be such a big to-do. They came in and rearranged the room so that they could bring in the computers and machines and then make room for all the people. Besides David and I, there were probably about 10 people either watching or performing the test. What they did was hook up some of the wires from her head to this machine and computer. They then asked her to point at pictures and they would send some kind of sensation to areas of her brain. Somehow, her response and the timing showed them where certain skills were in her brain. At one point, the area they were in caused her to have a severe toothache. She started crying and holding her mouth. So, they stopped where they were and Dr. Clarke said that they probably had touched the area where her facial feeling/nerves are. That was really weird. Anyway, the test lasted a little under an hour, but I think all the people and the test itself stressed Brenna out. I was glad when it was over. I am still uncomfortable with them messing with her brain - who wouldn't be? Then, after the test was over, Dr. Clarke showed us an actual picture they took of Brenna's brain during the surgery. (He made sure David wasn't squeamish). It was amazing and horrifying all together - to see my daughter's brain exposed like that. He showed us the grid of leads and where they are going to go in to remove the tissue. You could see almost her entire left half of her brain. My poor baby girl is going to have a huge scar, I'm sure. I know it doesn't matter - what matters is her getting better.

Anyway, today is going to be an easier day. Dr. Clarke said he would like to unhook her from the monitor so she could go to the play room this afternoon for a couple of hours. She's excited about that. It will be good for her to get up and move around a bit. It will be good for all of us to get up and move. Sitting in this room is really making my leg stiff. But I'm not complaining - I can't when I look at my daughter.

Thursday, June 26, 2008

Much Better!

Yesterday was a much better day! We started out the morning by getting Brenna's catheter out. Actually, it was coming out on it's own (ouch), so they took it out and we got her up out of bed for the first time and she was able to walk to the bathroom with help. Of course, it's kind of a huge ordeal with all the wires and attachments. Her poor little head probably feels like it weighs a ton!

She was also communicating much better. She would stay awake for longer periods of time and talk like normal. Thank the Lord! At one point she even gave Dr. Clarke a "peace out" sign when he left - which caused much laughter from the rest of us. Just seeing her sense of humor causes us to feel so much better about things.

She colored a little bit and then we worked on a hidden pictures book together. But she would fall asleep often. She woke up a little more yesterday evening and we watched half of the cartoon Robin Hood together. David and I are taking turns going to the Grizzlies House to get some rest, so it was my turn to stay in the hospital last night. She went to sleep at about 11:00, but then woke up whimpering around 3:00am. I'm not sure why, but she couldn't go back to sleep so I got up and read to her. It was supposed to help her sleep, but I think I was reading myself to sleep more than her. But after about an hour and a half, she drifted off, so I went back to my nice comfy cot and snoozed too.

This morning it was hard to motivate myself to move, but David brought in Starbucks and that helped tremendously!

Dr. Clarke came in this morning and asked her some questions. He was glad that she answered everything correctly and spoke clearly because he was seeing seizure activity on the monitor. He said he wonders if she's been having seizures at home that we don't even know about. (That's wonderful.) Anyway, he said her stomach pain seizures they've located pretty much coming from the hypo campus. The problem is that these other seizures are coming from a different area. So, when Dr. Boop gets back they have to discuss whether or not they're going to have to go into both areas to resect tissue or just the one area. I hate it that she's possibly been having more seizures all this time and we didn't even know it because the symptoms were so subtle. But I guess we just have to trust God to give the docs wisdom to know what to do about it.

This afternoon, they are going to map out the speech part of her brain. Clarke said it would just involve asking her lots of questions so it shouldn't be a big ordeal. I'm amazed at the technology here. Although the brain is still such a mystery, God has really allowed us to learn a lot about how it works. It makes me all the more amazed and in awe of Him and His creation!

Oh, her fever went down so that's good and as far as the fluid goes - they're still just observing her. Thanks for all the prayers!

Tuesday, June 24, 2008

What Now?

(David here)
Well last night was incredibly long and sleepless - shock! Brenna has a temperature! It is only 100 but is has gone up from 99.9. They gave her advil (easier to spell) right before they took her temp at 99.9 and in an hour went to 100. They are watching it - for now and in a few hours they will give her tylenol. Her left eye is beginning to swell - I assume trauma from the surgery.

Good news - (or Blessed news I should say), Dr. Clarke, the epileptologist, said he thinks they got enough seizures recorded last night (the first night, when it was to take 4-5 days!) So this is a huge act of God, I believe. So her next surgery is tenatively planned for Monday. So everyone can continue praying for her, but now more specifically for Monday plus the fever to go away!!!!

The surgeon is leaving today and will be gone for a few days, but will be back on Monday for surgery! On the MRI today (procedure after a surgery) they saw fluid, but it is not causing pressure at this time so they aren't too concerned. If the fluid builds then we could quite possible have an extra surgery to remove the leads before the Monday surgery. Several problems arise if this needs arises. 1. Dr. Boop (surgeon) is gone. 2. We want Dr. Boop. 3. The other Dr.(s) that would do it - I am not confident with!!! So PRAY ALSO for the fluid to not cause problems and that the leads don't 'need' to come out before scheduled surgery.

[All the above is informational without the big Dad's heart...the following...Dad's heart]
I knew ahead of time that this wouldn't be a piece of cake. One brain surgery is hard enough, two is too much, three - you think would be just a part of life (ha), four ridiculous and now we are at a point where we could have 'an extra' surgery - what in the world!

She is in a lot of pain! She had a hard time waking up yesterday from the surgery and has been lethargic a lot today. At one point today she was having seizures during her nap that registered on the monitor she is hooked up to, but I didn't know it because she didn't whine in her sleep and I think they didn't manifest themselves as stomach aches! Her hands were shaking one time and she wasn't speaking words that made any sense -- okay that frightened me! Reminded me of her big seizures she had while on protocol. Dr. is now trying to keep her calm (no seizures) and pain free. HEY THAT SOUNDS LIKE A GREAT IDEA!

A good thing is that she is complaining more - good because she is communicating more often and better. She is getting a back ache from laying down in bed so much, her throat is sore from tube down throat and head aches...she's miserable. Oh Lord Jesus, grant her physical peace!

As a father, this is killing me - I can't do anything to take away the pain nor can I speed up the process of recovery. This is where patience is tested at its best (or worst!)

Through all of this though - God has been here for us - praise HIM for that


It was a long night! David and I both decided to stay in the room with her. She actually woke up a little after I posted the blog and asked if we were going to sleep there. So that was good. Praise the Lord! I was so thankful to hear her talk a little. During the night, she slept pretty soundly but had several seizures. When she has a seizure, we press this little button and it flips on the light so they can get it on video. So we were up and down all night - lights on, lights off, holding Brenna every time she had a seizure, listening to the beeping every time her oxygen levels or respiratory rate got low, watching her brain waves on the monitor, etc, etc, etc.

They came in and took blood early this morning. I almost came a little unraveled when the lab tech was going to stick her. She already had an iv in each hand and one of them wasn't being used. I asked her why she couldn't just take blood out of the existing iv?? She said she would ask. Then the nurse came in and said they normally couldn't do that. I was pretty irritated. But just as the lady was about to put the needle in her arm, a nurse practitioner came in and said to wait. She looked at the iv and said it would be no problem to pull blood from it. She saved the day! I was so thankful. I know Brenna is tough, but come on - give her a break!!

She's still very lethargic. She responds only when we really prod her and then she goes back to sleep very quickly. She had an MRI that is routine for post-op. They didn't sedate her because she's still so sleepy. She did well. I was kind of worried that she might have a seizure during it, but she didn't. They saw on the MRI that she has fluid collecting over the electrode grid, but it's not causing any pressure so they're not concerned yet.

Dr. Clarke came in and said that since she had so many seizures last night, he thinks they've collected enough to get all the information that they need. Praise God!! I think everybody was praying for seizures. SO, if all goes according to schedule, he's going to give her more medication to calm down the seizures and help her brain relax a bit and then tomorrow he'll map out the location of her speech (they mapped out her movement earlier). What they hope is that they'll have everything put together so that Monday they can do the surgery. That's our hope too! I'm just so thankful that she's had seizures. I was worried that she might not have any at first so it would make us be in here longer. God heard our prayers!

She opened her eyes enough to meet the youth minister from East Win when he came by to see her. They also had a golden retriever on the floor who came by to visit her and she woke long enough for him to lick her hand. I convinced her to try some chicken noodle soup but all she ate was one noodle. She said it didn't taste good. She wanted to watch the disney channel but stayed awake for about five minutes and now she's snoring again. But, at least we've seen progress. I'm feeling much better now that I've seen her awake a bit more. But, still hate this whole process and watching my baby in pain. I don't like to wish the days away, but I'm longing for this to be over quickly.

I'm confident that God has her in His hand and I know undoubtedly that His hand is what I'm clinging to so we can make it through. Thanks for your continued prayers.

Monday, June 23, 2008

Wake-Up Brenna

We checked in this morning at 5:45 at Le Bonheur. Brenna was ready to go. Dad and Mom, (me) on the other hand were a little bleary eyed. I know I'm supposed to lie down and sleep in peace, but I think I looked at the clock every half hour. I finally got up at 4:45 and took a shower. As it turns out, it was a good thing I couldn't sleep because David had set his alarm on his phone for the wrong day.

Anyway, we got checked in and went right up to a room on the same-day surgery floor. The nurse came in and took blood and vitals, etc. By 7:00am they took us back to the "Bunny" room. It's the room where the patients get to pick out a new toy of their choice and then after surgery they can have it. We proceed through the bunny room and into the surgery waiting area. As soon as we got there, Dr. Boop met us. He told us that they had an emergency and he was going to have to operate on a boy and we'd have to be delayed. He was very kind and of course, we understood. If ours was an emergency, we'd want to have priority too. So, we went back to the room and waited........and waited........and waited some more. Brenna was pretty entertaining at first. Mamaw was there and some dear friends from Cleveland. Also, the music minister from East Win came. She was singing and dancing for a while, but then she got frustrated with the waiting and was bummed out. Finally, at about 11:15am, they called us back again. She got to pick out a second toy in the bunny room and then we went in and Dr. Boop showed us the picture of her brain. The anesthesiologist met with us and said they could possibly take out her loose tooth during surgery. Brenna was very happy about that.

Finally, we had to let her go. She took her stuffed dog and horse with her and practically skipped down the hall to surgery. As upbeat as she was, my heart was heavy watching her go. I'm familiar with that feeling because we've done it a few times, but it doesn't get any easier. It's that horrible, helpless feeling that makes you almost nauseous when they close the door behind her.

So, we went back to the room to wait......and wait.........and then we went down to eat lunch and then we waited........and waited some more. Of course they called every hour. They had said the surgery could take up to 3 or 4 hours, but it only took about an hour and a half. But then of course they had to close her up and then she went to recovery. They took her to the PICU for a while because her oxygen levels were low. But she didn't have to stay there. Finally at about 5:00pm, they called and said that they were going to take her up to a room on the EMU (epilepsy monitoring unit) and we could go up and wait for her. It was so good to finally see her be wheeled into the room where we could finally be with her and touch her. She was totally out of it, though. It took them about an hour to hook the wires up to the monitoring system that were coming out of her head. Each electrode that's on/in her brain has 16 or more hair-like wires that are twisted inside of one bigger wire. She has countless wires coming out of her head. It blows my mind. They put the electrodes in several different locations on the top and bottom of her brain and even inside where the tumor bed is. Her head is wrapped up in a turban style bandage. She's responded a little when we asked her to squeeze our hands or wiggle her toes, but she's still sleeping very soundly. One of the other doctors who was in the surgery came in and kind of made me a little nervous because he's concerned about her not waking up yet. But, Dr. Clarke - her epileptologist, who was also in the surgery, called the room and talked to David. He said that he thinks she's just in real need of some rest. He didn't want us to be overly concerned. That's easier said than done, but I trust him.
So, we're waiting for her to wake up and hoping she does soon. She's snoring pretty well right now. I hope she gets the rest she needs to recover and then wakes up when she's ready - which is hopefully within the next hour or so. If she doesn't wake up by 9:00pm, they'll probably do a CT scan to check for bleeding. We're hopeful it won't come to that.

Oh, and, they did remove her loose tooth, so she will be getting a visit from the tooth fairy tonight. (If the tooth fairy remembers and can get herself out of bed.)

Thursday, June 19, 2008


Just wanted to update everyone and request that you please put Brenna on your prayer list. We leave for Memphis on Sunday after Church and will check in to Le Bonheur Children's Hospital for surgery on Monday morning at 6:00am. St. Jude does not do the brain surgeries at their hospital, so we'll be doing it there. Her surgeon will be Dr. Boop, who also did her last surgery. It will be in two phases. The first surgery is to put the electrodes on the surface of her brain to map it out and get an exact location of the seizure area. It's also to show them where they do Not want to go. They will close up her head and leave the wires in for about 5-7 days to gather all the info that they need. Obviously she will be inpatient for this entire time. Then, after that, if they decide that there is no risk in harming her speech or motor skills, etc, they will do the second surgery which will be going in to remove the part of her brain that is causing the seizures. She could be in the hospital for a couple of weeks.

Brenna is not nervous at all. She's ready. I'm ready too, but just ready for it to be over! I thank you all for praying for our little girl. With thanksgiving for what God is going to do, we are presenting our requests to Him so that the peace of God which is beyond our understanding will guard our hearts and minds in Christ Jesus!!

Thursday, June 12, 2008

Fun Pics

Here's a couple of pics of the kids. Above is the three of them with the new kittens and below is Brenna in the mad scientist outfit from jr. church. She's a nut!

Decision Made!

God has blessed us with clear scans once again! Praise Him!

We saw once again today how Brenna can use her blue eyes to wrap people around her finger. We went in for MRI at 6:45 this morning. Which, really is a good thing. The earlier the better for us. Anyway, when they took her back to sedation, David went with her because I'm kind of afraid to get anywhere close to a giant magnet with the metal in my leg. :) She didn't have an iv in, so they were going to put one in, but she asked if she could be put to sleep with the "gas" first and then have them put the iv in. Normally, they don't do that, but David said the anesthesiologist basically said, "Whatever you want, Princess." That was really nice, especially after they had goofed up the first MRI schedule.

So after the MRI and she woke up in recovery, we went back to the Grizzlies House to pack up. We then went to our meeting with the neurosurgeon. His name is Dr. Boop, which is a little comical, but he's a great guy - very compassionate and takes time to explain things. He went over the procedure again with us and when we asked him he said if it were his daughter and the meds weren't working, he wouldn't hesitate a second to do the surgery. When you think of all the side effects of the seizure meds, it's pretty obvious that we can't leave her on them long term. Her quality of life will be so much better if we can get her off those meds and stop her from having these seizures. So we talked it over and decided that this is something that we need to do. Brenna agreed. Dr. Gajjar came in and also confirmed that he thought the surgery would be the best thing.

Now, am I excited about it??? No. Actually, I dread it. But, I feel at peace with our decision and confident that this is the road we're supposed to travel. It will probably be a two week ordeal, but the risks are relatively the same as with her first two brain surgeries. The director of the neurosurgery dept. will probably call tomorrow or next week to let us know the exact date we are to come, but it will probably be around the 23rd of June. That is when Dr. Clarke and Dr. Boop will both be available.

We continue to ask for your prayers as this day will come even quicker than we think. I know that God will use these doctors to heal our little girl's brain, but it's hard to think about them cutting into it for the third time.

I can't help but think that God has led David to preach on the subject of peace for such a time as this. He is King and sits enthroned over the flood and He blesses His people with peace. Thank You, Lord.

Suburban Woes/Long Days in Memphis

You'll never believe, I'm sure, that we had car trouble Tuesday night. I mean, who woulda thought?? After her testing on Tuesday, we went out to Habitat for Hope for the evening to chill and be refreshed. The girls got to ride horses and the boys got to 4-wheel it for a while and we had a fun evening away from "sick" stuff. We got back into town after dark and pulled into the Grizzlies House parking lot. Strangely enough, the suburban wouldn't shut off. David worked and worked on pulling and pushing in every direction, putting it in gear and out, etc. It just would not turn off. We just looked at each other and sighed. I called my Dad for ideas on what to do. David unplugged the battery - we thought that might kill it. It didn't. Then he pulled the wire out of the distributor and that finally did the trick. Then the key turned off and he was able to start it up and then turn it off again without problems.

I think that I'm starting to get the idea that our suburban just likes Memphis and wants to stay. I mean, it's done everything possible to make us leave it here - flat tire, broken belts, getting stolen, sticking ignition switch. It obviously wants to stay here and I think we're about ready to let it.

Anyway, the days have been kind of long as far as testing goes. Not because Brenna's had a lot of tests, but just the opposite. She only had one thing Monday, two on Tuesday and yesterday. So it kind of seems to be dragging on forever. We met with Dr. Clarke yesterday and had a good visit. He definitely recommends the surgery. He said after all the meds we've tried, our chances of ever getting the seizures under control with medication only are like 5%. Whereas, with surgery, the percentage goes up to more than 70%. Apparently it's a surgery they do several times a week so it's not a new thing.

Brenna had her MRI this morning and at 11:30 we'll go to meet with her neurosurgeon that did her last surgery. He's a great guy and will explain in detail what the surgery would entail. Then, we'll make our decision. We will also get the results of her scans and then the last thing of the day will be endocrine. We might not finish up with appointments until after 3:00, but we're still going to hit the road afterwards. There's no place like home and we would like to get there today.

I'll post our decision and scan results also, later on. Thanks for all the prayers!

Monday, June 9, 2008

Waiting in Memphis

Well, here we are. It's check up time again for Brenna. It's also the week we meet with the epileptologist and surgeon to decide whether or not we're going to do surgery. We've been praying about this meeting for a long time. And we know that many others have as well. We just want God's wisdom in making the right choice for Brenna and we know we can't do it on our own. It's really comforting to know that so many are praying for God's guidance for us. I know that He will make the way clear.

We arrived here last night a little before 10:00. We had to be in Assessment Triage at 7:45am this morning. Brenna was scheduled for an MRI at 8:45, so she couldn't eat or drink anything. So we got to the new CHili's Care Center - which is a new building at St. Jude that Chili's donated. When we checked in, we found out that they had moved us up to 7:15am - oops, but they were running behind so it didn't matter. They got her vein on the first poke and then left the iv in because she was to be sedated for the MRI. We went on and signed in for MRI....................almost three hours later we find out that they failed to tell us the MRI machine that they use on Brenna was broken and they rescheduled her MRI for THursday. I knew they were running behind because of all the people waiting, but I was a bit frustrated to find out that they hadn't told us we were rescheduled. They took her iv out and we decided to go to lunch since we had all skipped breakfast.

Our plans have changed a bit now. We hoped to go home on Wednesday after our meeting with the docs, but it looks like it will be late Thursday or even Friday now. Oh well, I guess we're used to our plans being changed. I think we've come to expect it.

Right now, our plan is to go see Kung Fu Panda at the Peabody Place. We need to go have a few laughs and we might as well make the best of it.