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.
Tuesday, June 24, 2008
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.
pm
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.)
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.
pm
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
Surgery
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!!
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.
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!
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.
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.
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