Thursday, October 30, 2008
I'm blessed...
I have good days and bad days. It seems like everytime I have a bad one something happens to remind me how blessed I am. Grab a kleenex and take a look at this video.....99 balloons.... www.youtube.com/watch?v=th6Njr-qkq0
Geneticist & Stuff
It's been an interesting week to say the least. We saw the geneticist on Monday and she agreed that Hannah seems to have DRAVET syndrome. So, we then had a frustrated moment when she informed me our insurance would not cover the SCN1A test we needed. She also felt like Hannah had extreme hypotonia in both hands and quite a bit in her ankles. So, I left her office with a promise to help me in any way with my appeals to get the testing done. Luckily, the pediatrician that is my parent sponsor from the Idea League was a HUGE help to me in guiding me to talk to the right people. Yesterday I spoke with a representative at a different lab that can also do the testing and they are working to help get the insurance to pay for it. It just makes things easier when you know you have people in the ring on your side of the fight. So, we have the ball rolling in this area anyway.
Having DRAVET doesn't really change Hannah's treatment but it does help us know which drugs to stay away from, etc. The hardest part is the realization that she will never outgrow her seizures. Hannah is by far not the worst DRAVET child out there. Some of these kids have hundreds of seizures a day. The part that has us concerned is that some DRAVET kids have really long seizures called status. These seizures can cause death. Unfortunately these are what Hannah experiences. She doesn't have alot of seizures but when she does they are these life threatening ones. She will be one of only 500 known cases in the US. Incredbible. We have hope though because we know Hannah has responded to the right drug in the past and we beleive that she can do that again. We just have to keep praying and hoping. You can read more about DRAVET at http://www.idea-leauge.org/
I've been wrestling and wrestling with finding therapy resources for Hannah in our area. On Monday a friend sent me a link to a special needs ballerina program and when I checked it out I found camp hope therapy program which can give us everything we've been needing therapy wise for Hannah. I'm working to set up evaluations now. They have gymnastics, the horse riding therapy(can't remember the name), and dance programs too. It's just a really neat program all around for kids with special needs.
I typed up an FYI letter for Hannah's pediatrician just to kind of keep her in the loop about everything and asked some questions. They are referring Hannah to Scottish Rites for the low muscle tone. They'll evaluate her and if anything is needed they'll provide it. If nothing else, at least when another doctor comments about her muscle tone I can say she was evaluated by Scottish Rites already and there was nothing we could do, etc.
We're only 4 months from going to get Hannah's service dog. I'm putting the finishing touches on her video.(Thank you Rachael for loaning me your camera!) Some have asked, and yes we do still need help with travel expenses, and dog supplies. To get a tax deduction for your gift you can send the check to Central Baptist Church and make sure they know it is for Hannah Chapman. We'll be having other fund raisers soon but I haven't put them together yet. I'm so not begging guys. It's just easier to let everyone know in one place than answer the emails individually. I'm not lazy, just swamped. Forgive me please.
Central Baptist Church
PO Box 263
1100 Old Bynum Road
Hillsboro, TX 76645
Thanks for your continued prayers and support. We know we could not make it through any of this without it!
Having DRAVET doesn't really change Hannah's treatment but it does help us know which drugs to stay away from, etc. The hardest part is the realization that she will never outgrow her seizures. Hannah is by far not the worst DRAVET child out there. Some of these kids have hundreds of seizures a day. The part that has us concerned is that some DRAVET kids have really long seizures called status. These seizures can cause death. Unfortunately these are what Hannah experiences. She doesn't have alot of seizures but when she does they are these life threatening ones. She will be one of only 500 known cases in the US. Incredbible. We have hope though because we know Hannah has responded to the right drug in the past and we beleive that she can do that again. We just have to keep praying and hoping. You can read more about DRAVET at http://www.idea-leauge.org/
I've been wrestling and wrestling with finding therapy resources for Hannah in our area. On Monday a friend sent me a link to a special needs ballerina program and when I checked it out I found camp hope therapy program which can give us everything we've been needing therapy wise for Hannah. I'm working to set up evaluations now. They have gymnastics, the horse riding therapy(can't remember the name), and dance programs too. It's just a really neat program all around for kids with special needs.
I typed up an FYI letter for Hannah's pediatrician just to kind of keep her in the loop about everything and asked some questions. They are referring Hannah to Scottish Rites for the low muscle tone. They'll evaluate her and if anything is needed they'll provide it. If nothing else, at least when another doctor comments about her muscle tone I can say she was evaluated by Scottish Rites already and there was nothing we could do, etc.
We're only 4 months from going to get Hannah's service dog. I'm putting the finishing touches on her video.(Thank you Rachael for loaning me your camera!) Some have asked, and yes we do still need help with travel expenses, and dog supplies. To get a tax deduction for your gift you can send the check to Central Baptist Church and make sure they know it is for Hannah Chapman. We'll be having other fund raisers soon but I haven't put them together yet. I'm so not begging guys. It's just easier to let everyone know in one place than answer the emails individually. I'm not lazy, just swamped. Forgive me please.
Central Baptist Church
PO Box 263
1100 Old Bynum Road
Hillsboro, TX 76645
Thanks for your continued prayers and support. We know we could not make it through any of this without it!
Tuesday, October 21, 2008
The next Few Months....DRAVET
Hi All. I thought I'd send out an update. Hannah's back at school fulltime as of yesterday. She sure was glad. Me, I enjoy seeing her enjoying life, but there is always that uneasiness in having her away from me. I'm not sure if it'll ever go away. Every morning when I leave her I hug her to death and give her a million kisses. I know her teachers have to think I'm nuts. LOL!
The reason for this update is to just let y'all know what is going to happen in the next few months. We are pursuing a DRAVET syndrome diagnosis. I've spent a few weeks pouring over the information, talking with other parent's of DRAVET children, a pediatrician in San Marcos who's daughter also has DRAVET(she is also on the Idea League board of directors), and the Idea League themselves. The Idea League is a universal organization for DRAVET. There are only 500 known cases of DRAVET in the US and Hannah is likely one of them. So, in the coming months we will work to either confirm or rule out this syndrome. It's a pretty tedious process so please pray for us. There are only two labs in the US that perform the testing and there is only a hand full of specialist that treat it. Most of them are located in Chicago. We do know however that the epileptologist Hannah is scheduled to see in April has diagnosed and is treating one other case. The Idea League is sending information to Hannah's neuro, the epileptologist, and her pediatrician. It may take us quite some time to get the official diagnosis but we are putting things in motion. We have to try to get the insurance on board with the testing because their contracted labs can't do it and the specialists would be out of network if we have to see them. Fun, huh? LOL!
I could go on an on about how we came to this conclusion. The clinical manifestation of DRAVET has been on spot where Hannah is concerned. The drugs that are bad for DRAVET have been bad for Hannah. The drugs that are good for DRAVET have been good for Hannah. The whole sodium mystery we had when she was on Trileptal totally makes sense now. The bad news for us is that Hannah having DRAVET means she will not "outgrow" her epilepsy. The good news is that it seems like from Hannah's history when she is on the right drugs she responds well to therapy. There are DRAVET kids who are taking drugs only approved in Europe and are still not responding well to treatment. So, our goal first is to get her on the drugs that work and then we'll go from there. We've got to get these status episodes under control. God has had his hand on that girl! She's had three status episdoes in less than 3 months and is no worse for wear. I know kids who have experienced one episode, not to the extent Hannah did, and they can't talk or walk. They've been recovering for years. Actually I haven't met a kid yet who has had a status that wasn't severely affected. We really have been extremely fortunate. THANK YOU GOD!!!!!
We are still on to go get Hannah's dog in March. We're trying to do some fund raising to finish up her travel expenses. I'm thinking about helping Hannah design some Christmas cards and selling them off her blog. Anyone have any experience with that? Also, if anyone has a microwave they aren't using we can sure use it. Mine is on the brink. My video camera broke too and I need to finish up Hannah's video to send to 4paws to help them make a definate match for Hannah. If anyone has one I can borrow for a week or two, it would be really appreciated. If I can avoid having to make these purchases I need to. 3 hospitalizations, medication copays, doctor visit copays, deductibles, and half a dozen ER visit copays in the last 3 months has taken it's toll. Unfortunately we're not done yet. There are more tests and doctors to come.
Oh, and on top of all Hannah's stuff I will be seeing a gasto on the 30th. My doctor thinks my gallbladder is messed up. I've been having severe upper stomach pain off and on since July. Usually in the middle of the night. So, I dont' know what a gallbladder being messed up entails but I guess I'll find out on the 30th. It can't be fun, I'm afraid. Ugggh!
Wow, one of these days I'll give y'all GREAT news! I promise! LOL! I hate that everything is not too fun stuff to read, but if I'm real, this is our life at the moment. Thanks so much everyone for your prayers and support. I know I ramble on and on.
God Bless and Keep Each of You!
The reason for this update is to just let y'all know what is going to happen in the next few months. We are pursuing a DRAVET syndrome diagnosis. I've spent a few weeks pouring over the information, talking with other parent's of DRAVET children, a pediatrician in San Marcos who's daughter also has DRAVET(she is also on the Idea League board of directors), and the Idea League themselves. The Idea League is a universal organization for DRAVET. There are only 500 known cases of DRAVET in the US and Hannah is likely one of them. So, in the coming months we will work to either confirm or rule out this syndrome. It's a pretty tedious process so please pray for us. There are only two labs in the US that perform the testing and there is only a hand full of specialist that treat it. Most of them are located in Chicago. We do know however that the epileptologist Hannah is scheduled to see in April has diagnosed and is treating one other case. The Idea League is sending information to Hannah's neuro, the epileptologist, and her pediatrician. It may take us quite some time to get the official diagnosis but we are putting things in motion. We have to try to get the insurance on board with the testing because their contracted labs can't do it and the specialists would be out of network if we have to see them. Fun, huh? LOL!
I could go on an on about how we came to this conclusion. The clinical manifestation of DRAVET has been on spot where Hannah is concerned. The drugs that are bad for DRAVET have been bad for Hannah. The drugs that are good for DRAVET have been good for Hannah. The whole sodium mystery we had when she was on Trileptal totally makes sense now. The bad news for us is that Hannah having DRAVET means she will not "outgrow" her epilepsy. The good news is that it seems like from Hannah's history when she is on the right drugs she responds well to therapy. There are DRAVET kids who are taking drugs only approved in Europe and are still not responding well to treatment. So, our goal first is to get her on the drugs that work and then we'll go from there. We've got to get these status episodes under control. God has had his hand on that girl! She's had three status episdoes in less than 3 months and is no worse for wear. I know kids who have experienced one episode, not to the extent Hannah did, and they can't talk or walk. They've been recovering for years. Actually I haven't met a kid yet who has had a status that wasn't severely affected. We really have been extremely fortunate. THANK YOU GOD!!!!!
We are still on to go get Hannah's dog in March. We're trying to do some fund raising to finish up her travel expenses. I'm thinking about helping Hannah design some Christmas cards and selling them off her blog. Anyone have any experience with that? Also, if anyone has a microwave they aren't using we can sure use it. Mine is on the brink. My video camera broke too and I need to finish up Hannah's video to send to 4paws to help them make a definate match for Hannah. If anyone has one I can borrow for a week or two, it would be really appreciated. If I can avoid having to make these purchases I need to. 3 hospitalizations, medication copays, doctor visit copays, deductibles, and half a dozen ER visit copays in the last 3 months has taken it's toll. Unfortunately we're not done yet. There are more tests and doctors to come.
Oh, and on top of all Hannah's stuff I will be seeing a gasto on the 30th. My doctor thinks my gallbladder is messed up. I've been having severe upper stomach pain off and on since July. Usually in the middle of the night. So, I dont' know what a gallbladder being messed up entails but I guess I'll find out on the 30th. It can't be fun, I'm afraid. Ugggh!
Wow, one of these days I'll give y'all GREAT news! I promise! LOL! I hate that everything is not too fun stuff to read, but if I'm real, this is our life at the moment. Thanks so much everyone for your prayers and support. I know I ramble on and on.
God Bless and Keep Each of You!
Sunday, October 19, 2008
Welcome to Holland
WELCOME TO HOLLAND
byEmily Perl Kingsley.
I am often asked to describe the experience of raising a child with adisability - to try to help people who have not shared that uniqueexperience to understand it, to imagine how it would feel. It's likethis......When you're going to have a baby, it's like planning a fabulousvacation trip - to Italy. You buy a bunch of guide books and makeyour wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It'sall very exciting.
After months of eager anticipation, the day finally arrives. You packyour bags and off you go. Several hours later, the plane lands. Thestewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up forItaly! I'm supposed to be in Italy. All my life I've dreamed of goingto Italy."But there's been a change in the flight plan. They've landed inHolland and there you must stay.
The important thing is that they haven't taken you to a horrible,disgusting, filthy place, full of pestilence, famine and disease.It's just a different place.So you must go out and buy new guide books. And you must learn awhole new language. And you will meet a whole new group of people youwould never have met.It's just a different place. It's slower-paced than Italy, lessflashy than Italy. But after you've been there for a while and youcatch your breath, you look around.... and you begin to notice thatHolland has windmills....and Holland has tulips. Holland even hasRembrandts.
But everyone you know is busy coming and going from Italy... andthey're all bragging about what a wonderful time they had there. Andfor the rest of your life, you will say "Yes, that's where I wassupposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... becausethe loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
byEmily Perl Kingsley.
I am often asked to describe the experience of raising a child with adisability - to try to help people who have not shared that uniqueexperience to understand it, to imagine how it would feel. It's likethis......When you're going to have a baby, it's like planning a fabulousvacation trip - to Italy. You buy a bunch of guide books and makeyour wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It'sall very exciting.
After months of eager anticipation, the day finally arrives. You packyour bags and off you go. Several hours later, the plane lands. Thestewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up forItaly! I'm supposed to be in Italy. All my life I've dreamed of goingto Italy."But there's been a change in the flight plan. They've landed inHolland and there you must stay.
The important thing is that they haven't taken you to a horrible,disgusting, filthy place, full of pestilence, famine and disease.It's just a different place.So you must go out and buy new guide books. And you must learn awhole new language. And you will meet a whole new group of people youwould never have met.It's just a different place. It's slower-paced than Italy, lessflashy than Italy. But after you've been there for a while and youcatch your breath, you look around.... and you begin to notice thatHolland has windmills....and Holland has tulips. Holland even hasRembrandts.
But everyone you know is busy coming and going from Italy... andthey're all bragging about what a wonderful time they had there. Andfor the rest of your life, you will say "Yes, that's where I wassupposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... becausethe loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Saturday, October 18, 2008
Ugggh!
Hannah woke up throwing up and having diarrhea. She's not running fever. Please pray seizures stay at bay even through whatever this is today.
Friday, October 17, 2008
Keppra
Hannah seems to be doing alright on the Keppra. No behavioral or emotional outbursts. She seems herself pretty much. Everyday she gets a little more back to herself. She didn't go back to school this week. I kept her with me to see how she did on the new med. I did take her for 2 hours yesterday and the school let me stay with her. She really enjoys school. She went for 3 hours today and I stayed with her again. If we get through the weekend without any issues she'll return on Monday as usual. She sees her neuro on the 23rd and the geneticist on the 27th. Please continue to pray for her. She's a trooper but her little body needs some time to heal. Her skin is a mess from all the tape that has been pulled off her. I've got to where I just let it wear off because I feel so bad rubbing at it. We've tried everything to get it off and it comes off some, but not all the way. Anyway, she just really needs a break.
I am going to see a gasto on the 30th. It looks like I may have gallbladder issues. I've been experiencing horrible pain since June. I had my yearly the other day and everything checked out o.k. and my MD feels like my symptoms are gallbladder related. So, I'm staying away from fatty foods and hoping I can put off any kind of surg. until I get Hannah straighted out. I know it's not a big deal, but I've just got alot on my plate right now. I'm kind of dog piled.
Didn't mean to make this post about me. I got a letter today from 4paws asking more questions about our family and Hannah's interaction with dogs. Well, Hannah hasn't been around dogs so I will have to find one that we can use for a few hours that is kind of calm and kid friendly. If any of you have one like that and wouldn't mind letting us come by or bringin it over, I'd appreciate it. We need to video her with the dog too. Any size dog will be fine.
I apologize for my brain dead posting lately. I haven't even tried to make it "correct".
Thanks for all you do!
I am going to see a gasto on the 30th. It looks like I may have gallbladder issues. I've been experiencing horrible pain since June. I had my yearly the other day and everything checked out o.k. and my MD feels like my symptoms are gallbladder related. So, I'm staying away from fatty foods and hoping I can put off any kind of surg. until I get Hannah straighted out. I know it's not a big deal, but I've just got alot on my plate right now. I'm kind of dog piled.
Didn't mean to make this post about me. I got a letter today from 4paws asking more questions about our family and Hannah's interaction with dogs. Well, Hannah hasn't been around dogs so I will have to find one that we can use for a few hours that is kind of calm and kid friendly. If any of you have one like that and wouldn't mind letting us come by or bringin it over, I'd appreciate it. We need to video her with the dog too. Any size dog will be fine.
I apologize for my brain dead posting lately. I haven't even tried to make it "correct".
Thanks for all you do!
Tuesday, October 14, 2008
Going Home Again
We are going to try going home today. Hannah's eeg hasn't changed. She didn't have any more seizures. They gave her Keppra via IV and got it at a therapeutic level and they also have dilantin at a therapeutic level. we'll go home taking 250 mls' twice a day. We will remain on lamictal until the 23rd when we see the neuro. If she does well on Keppra then we will wean lamictal. The epi agrees with this approach. Sadly this is how it is. There is no cure for epilepsy so it's a guessing game when treating it. You start out on a med and a dosage and you just keep trying until hopefully you get to one that will control it. Sometimes, you will get control on a med for years and then all of sudden it'll quit working. It's so frustrating. So, hopefully keppra will work and we won't have any of the negative side effects that I fear. I'd love hannah to never have another seizure but at this point my goal is to get the status episodes under control. Seizures we can regretfully live with but status seizures we cannot. Please keep us in your prayers. We're exhausted. The only thing that keeps us going is prayers and the spirit of this little girl who fights this battle. I'm telling you, she is a HERO. She beats Tony Romo or any super star any day! They can't even compete with Hannah. LOL! She's incredible y'all. They came in to draw blood this morning and she was playing with the tech. Giggling and smiling and the woman had a needle in her hand! LOL! No, she's not crazy, she's just our happy go lucky lover of life princess! How can I let this get me down?
Monday, October 13, 2008
We're back in Cook's....Here are my two updates....
Well, we're back in Cook's. This time in the epilepsy monitoring unit. Thankfully we got medical intervention quick enough that Hannah did not go into respiratory distress so she did not have to be intubated. She's on regular oxygen. Right now they are about to start another dilantin drip. She's resting.
What a night! What a weekend! On Friday Hannah was her happy go lucky self. No illness at all. She had a blast Friday. Friday night out of the blue she has a seizure that lasts over 5 minutes and we end up in ER. I've already whined about that experience so I won't do it again. Saturday she did fine. Nothing out of the ordinary. Sunday she coughed all day but never ran a fever. About 10:30 she had a seizure that lasted 4 1/2 minutes. She came out of it but didn't start breathing again right away. David called 911 and she started breathing. Then she went into the second seizure right after that and it lasted nearly 6 minutes so I gave her diastat and we made a trip to Hillsboro ER in an ambulance. While at the ER Hannah did not seize anymore and all her bloodwork and x-ray's came back alright. They sent us home. We were home 30 minutes when she went into another seizure and it lasted over 6 minutes. We went back to the ER and they started a dilantin drip and sent us to Cook's in an ambulance.
We got to Cook's around 4 a.m. and was in ER until 9:30 a.m. We are in P410 in Epilepsy monitoring unit. Don't have alot of information right now. They are trying to make sure she doesn't have a status. We may get to see the epi that we weren't scheduled to see until April while we are in here. Also, it looks like they are finally going to put her on topomax again.
I'll post again when we have more information. Please pray for Hannah and for David and I. We're so tired. We were up the entire night and didn't get much sleep. Also, pray for the boys. They are both being so brave but I know they are worried. Thanks.
Next....
The neuro just came in and we had a long chat. He does not want us back on Topomax. He thinks we need to try other med combinations before we resort to going back on topomax. He's reasoning is that Hannah's biggest problem outside of seizures is development and when we took her off topomax her world opened up. I agree, but a part of me wants to go back to what works no matter the cost. I so wish I could know what Hannah would prefer. (((sigh))) Right now, the plan is to put her on Keppra. I'm very nervous about it because everyone I know that has a kid on it has told me horror stories about it. Saying it made thier kid psychotic, etc. He promised me that if we saw that it was going to affect Hannah that way we'd go off of it and he'd put her back on topomax. He says that he sees more people do well on keppra than don't. Anyway, they're about to hook her up to continual EEg and video EEg. When we get the results form all that we'll make a decision. Please pray we make the right one. I'll update when I can. She's still resting well.
What a night! What a weekend! On Friday Hannah was her happy go lucky self. No illness at all. She had a blast Friday. Friday night out of the blue she has a seizure that lasts over 5 minutes and we end up in ER. I've already whined about that experience so I won't do it again. Saturday she did fine. Nothing out of the ordinary. Sunday she coughed all day but never ran a fever. About 10:30 she had a seizure that lasted 4 1/2 minutes. She came out of it but didn't start breathing again right away. David called 911 and she started breathing. Then she went into the second seizure right after that and it lasted nearly 6 minutes so I gave her diastat and we made a trip to Hillsboro ER in an ambulance. While at the ER Hannah did not seize anymore and all her bloodwork and x-ray's came back alright. They sent us home. We were home 30 minutes when she went into another seizure and it lasted over 6 minutes. We went back to the ER and they started a dilantin drip and sent us to Cook's in an ambulance.
We got to Cook's around 4 a.m. and was in ER until 9:30 a.m. We are in P410 in Epilepsy monitoring unit. Don't have alot of information right now. They are trying to make sure she doesn't have a status. We may get to see the epi that we weren't scheduled to see until April while we are in here. Also, it looks like they are finally going to put her on topomax again.
I'll post again when we have more information. Please pray for Hannah and for David and I. We're so tired. We were up the entire night and didn't get much sleep. Also, pray for the boys. They are both being so brave but I know they are worried. Thanks.
Next....
The neuro just came in and we had a long chat. He does not want us back on Topomax. He thinks we need to try other med combinations before we resort to going back on topomax. He's reasoning is that Hannah's biggest problem outside of seizures is development and when we took her off topomax her world opened up. I agree, but a part of me wants to go back to what works no matter the cost. I so wish I could know what Hannah would prefer. (((sigh))) Right now, the plan is to put her on Keppra. I'm very nervous about it because everyone I know that has a kid on it has told me horror stories about it. Saying it made thier kid psychotic, etc. He promised me that if we saw that it was going to affect Hannah that way we'd go off of it and he'd put her back on topomax. He says that he sees more people do well on keppra than don't. Anyway, they're about to hook her up to continual EEg and video EEg. When we get the results form all that we'll make a decision. Please pray we make the right one. I'll update when I can. She's still resting well.
Saturday, October 11, 2008
Frustrated
Hi all. Just an update. We were in ER with Hannah again last night. David and I were in the livingroom hanging with Zach when I heard a strange noise on the baby monitor and sure enough Hannah was having a seizure. I had to give diastat to stop it and then we made a trip to ER because Cook's neuro's told us not to mess around. If she was having a seizure that I had to use diastat to stop, having clusters, or going into status to take her to the nearest ER. Two status seizures in less than 3 months is serious, and they feel like the ER can hopefully stop the seizures and keep status at bay if we get there in time. Thankfully the diastat seemed to work this time and she didn't have more seizures when we got her there. They gave her a dose of klonipin and sent us home. Because she hadn't been sick, wasn't running any fever and the only thing that had happened that day was she got a flu shot they didn't poke and prod her. For that we were thankful. She still has bruises and cuts all over her arms from her Cook's ordeal.
We got to ER and David took Hannah back while I filled out all the neccessary paperwork for the 100th time. In the mean time the triage nurse comes out all in a huff and says, "Chapman, where is Chapman?" Then she looks at me all hateful and says, "HANNAH, where is she?" I told her she'd already been taken back. She then sighed real heavy and said, "how much does she weigh? Do you know?" I told her and she turned with her little attitude. Then as she was walking away I said, "Good God! What is your problem?" She met me in a few minutes outside the door and patted my shoulder and said, "I'm sorry" I go in with Hannah and she is sleeping off the diastat pretty soundly. The ER doctor comes in about an hour later and starts asking questions. Then he tells me there is not really anything he can do. Can you give me a number so I can call the neuro he said. I gave them the number. I explained why we were there. He explained that he didn't mean to sound heartless but really if she wasn't seizing when we come in there is nothing they can do. DUH! I brought her there to have her vitals checked because I gave her diastat and the seizure lasted too long that she had. I can't predict whether she's going to go stauts or not! I was doing what the neuro's told me to do. Do they think I enjoy giving them $200 everytime I come there? UGGGGGH! So, he called the neuro. They asked about her vitals and then told them to give her klonipin and for me to continue giving it to her through the weekend. We did all that last time and she still went status a few hours after I did it. Thankfully this time it all seems to have worked and she didn't have anymore last night.
I'm soooooooooo frustrated with this situation. Basically they are saying we are doing all we can be doing. However, I can't accept that. We had complete seizure control for 2 1/2 years on topomax. At this point I'm ready to put her back on it to see if it'll work again. The only reason we took her off of it was becasue she had gone seizure free for 2 years and we chose it to get rid of because we thought she was having cognitive side effects. And her world did open up when she came off of it. It's a catch 22 I'm afraid. We either have seizures, life threatening seizures or we have a zombie. It pretty much stinks. Many people that have kids with Dravet syndrome think Hannah has it. When I mention it to the neuro's and doctors they look at me like I'm from Mars. Apparently there is only a handful of neuro's that can diagnose it or even know about it and they are in places like Chicago, ,etc. We see our neuro on the 23rd and I'm taking him the information I've gathered on it. Not that it'll matter really. We then have an epileptologist appointment in April of '09. Earliest available date. We see a geneticist on the 27th of this month as well.
I'm sorry this is not one of my positive moments. I"m just really frustrated, tired and scared. Please keep praying for Hannah and hope they can find some answers soon. Seizures we can handle even, but status we cannot. Well, we can, but it is really hard.
We got to ER and David took Hannah back while I filled out all the neccessary paperwork for the 100th time. In the mean time the triage nurse comes out all in a huff and says, "Chapman, where is Chapman?" Then she looks at me all hateful and says, "HANNAH, where is she?" I told her she'd already been taken back. She then sighed real heavy and said, "how much does she weigh? Do you know?" I told her and she turned with her little attitude. Then as she was walking away I said, "Good God! What is your problem?" She met me in a few minutes outside the door and patted my shoulder and said, "I'm sorry" I go in with Hannah and she is sleeping off the diastat pretty soundly. The ER doctor comes in about an hour later and starts asking questions. Then he tells me there is not really anything he can do. Can you give me a number so I can call the neuro he said. I gave them the number. I explained why we were there. He explained that he didn't mean to sound heartless but really if she wasn't seizing when we come in there is nothing they can do. DUH! I brought her there to have her vitals checked because I gave her diastat and the seizure lasted too long that she had. I can't predict whether she's going to go stauts or not! I was doing what the neuro's told me to do. Do they think I enjoy giving them $200 everytime I come there? UGGGGGH! So, he called the neuro. They asked about her vitals and then told them to give her klonipin and for me to continue giving it to her through the weekend. We did all that last time and she still went status a few hours after I did it. Thankfully this time it all seems to have worked and she didn't have anymore last night.
I'm soooooooooo frustrated with this situation. Basically they are saying we are doing all we can be doing. However, I can't accept that. We had complete seizure control for 2 1/2 years on topomax. At this point I'm ready to put her back on it to see if it'll work again. The only reason we took her off of it was becasue she had gone seizure free for 2 years and we chose it to get rid of because we thought she was having cognitive side effects. And her world did open up when she came off of it. It's a catch 22 I'm afraid. We either have seizures, life threatening seizures or we have a zombie. It pretty much stinks. Many people that have kids with Dravet syndrome think Hannah has it. When I mention it to the neuro's and doctors they look at me like I'm from Mars. Apparently there is only a handful of neuro's that can diagnose it or even know about it and they are in places like Chicago, ,etc. We see our neuro on the 23rd and I'm taking him the information I've gathered on it. Not that it'll matter really. We then have an epileptologist appointment in April of '09. Earliest available date. We see a geneticist on the 27th of this month as well.
I'm sorry this is not one of my positive moments. I"m just really frustrated, tired and scared. Please keep praying for Hannah and hope they can find some answers soon. Seizures we can handle even, but status we cannot. Well, we can, but it is really hard.
Tuesday, October 7, 2008
Recovering
I apologize for just now posting an update. It's been a whirlwind of a few days. Hannah is home and recovering. She went back to school today and other than being a little tired which she will be for a while, she seems like she enjoyed the day.
Things will be a little up in the air for a while I'm afraid. Just a run down of what happened...Hannah went status on Oct. 1st and had to be intubated. She was then placed in PICU. After the status she ran 104 degree temp. They packed her in ice and rotated tylenol and ibupophen to try and get the fever down. It took an entire day for it to go down even with the ice. After the fever came down her CPK levels kept rising. They got near 5000. We stayed longer in PICU due to this level. While in Cook's they did some immunolgical testing as well as neurological testing. The preliminary tests came back alright. There are more extensive tests pending. We should get those back next week. We were released on Sunday to come home.
This episode was almost identical to the episode she had in July. That's two status episodes in less than 3 months. Not good. Her neurologist is concerned and is doing all they can do. The things we are doing right now are all we can do at the moment. Hannah has an appointment with her neuro on the 23rd to just review everything. We have an appointment with the epileptologist in April. Yep, you heard me, April. That's the earliest we can get in. The epileptologist specializes in epilepsy and will do some advance testing. His findings will determine if something more drastic than meds is needed to help Hannah like surg, etc.
On the 27th of Oct. Hannah will see the geneticist to see if there is anything genetic going on. We've been looking at DRAVET syndrome but Hannah fits some of the criteria but not most of it. There is a test that can be done too to determine DRAVET, and we will look into doing it as well. Just trying to get some answers.
The only problems since Hannah has been home is that the last three nights she's had nightmares. SHe's never had nightmares before. She is also breaking out in a cold sweat and is clammy feeling. The doctors seem to think the nightmares are trauma related. I mean this is the second time she's been through this in less than three months. They are suggesting therapy but
I'm not sure how therapy works for a child with autism. The clamminess and cold sweats they think are withdrawals from the narcotics she was on while intubated and trying to get the status to stop. Other than that she is eating alright and other than tiring more easily she seems to be doing fine.
We feel so blessed that we didn't lose our girl. Coming this close in less than three months is hard, I won't lie to you. I cried when I left her at school this morning. I just want to keep her close to me always. I think though that if something were to happen to her, say at school, I'd find comfort in knowing that she was doing or participating in something she enjoyed when it happened. As bad as I want to keep her close and safe, I can't. She deserves to live life to the fullest no matter what. I have to keep reminding myself of that. Hannah loves life no matter what happens. I can't stifle that with my fears.
We thank y'all so much for all the prayers, and notes of encouragment. There is no way to express our gratitude. This is much longer than I intended. Sorry! LOL!
Things will be a little up in the air for a while I'm afraid. Just a run down of what happened...Hannah went status on Oct. 1st and had to be intubated. She was then placed in PICU. After the status she ran 104 degree temp. They packed her in ice and rotated tylenol and ibupophen to try and get the fever down. It took an entire day for it to go down even with the ice. After the fever came down her CPK levels kept rising. They got near 5000. We stayed longer in PICU due to this level. While in Cook's they did some immunolgical testing as well as neurological testing. The preliminary tests came back alright. There are more extensive tests pending. We should get those back next week. We were released on Sunday to come home.
This episode was almost identical to the episode she had in July. That's two status episodes in less than 3 months. Not good. Her neurologist is concerned and is doing all they can do. The things we are doing right now are all we can do at the moment. Hannah has an appointment with her neuro on the 23rd to just review everything. We have an appointment with the epileptologist in April. Yep, you heard me, April. That's the earliest we can get in. The epileptologist specializes in epilepsy and will do some advance testing. His findings will determine if something more drastic than meds is needed to help Hannah like surg, etc.
On the 27th of Oct. Hannah will see the geneticist to see if there is anything genetic going on. We've been looking at DRAVET syndrome but Hannah fits some of the criteria but not most of it. There is a test that can be done too to determine DRAVET, and we will look into doing it as well. Just trying to get some answers.
The only problems since Hannah has been home is that the last three nights she's had nightmares. SHe's never had nightmares before. She is also breaking out in a cold sweat and is clammy feeling. The doctors seem to think the nightmares are trauma related. I mean this is the second time she's been through this in less than three months. They are suggesting therapy but
I'm not sure how therapy works for a child with autism. The clamminess and cold sweats they think are withdrawals from the narcotics she was on while intubated and trying to get the status to stop. Other than that she is eating alright and other than tiring more easily she seems to be doing fine.
We feel so blessed that we didn't lose our girl. Coming this close in less than three months is hard, I won't lie to you. I cried when I left her at school this morning. I just want to keep her close to me always. I think though that if something were to happen to her, say at school, I'd find comfort in knowing that she was doing or participating in something she enjoyed when it happened. As bad as I want to keep her close and safe, I can't. She deserves to live life to the fullest no matter what. I have to keep reminding myself of that. Hannah loves life no matter what happens. I can't stifle that with my fears.
We thank y'all so much for all the prayers, and notes of encouragment. There is no way to express our gratitude. This is much longer than I intended. Sorry! LOL!
Saturday, October 4, 2008
Tomorrow and Test Results
If everything goes o.k. we'll probably go home tomorrow. Hannah is ready. She's doing alot better.
We got some tests results today. It looks like her immune system is working fine. No abnormalities. Basically the immunologist thinks Hannah's getting all these illnesses and will until her system builds an immunity to them. Most kids go through this earlier than Hannah but since
Hannah was never in daycare or out in public alot she didn't do it then. Now, being in school she is catching everything. (((sigh))) Speaking of school, she is READY to go back. Mom isn't ready but she is. LOL!
That leaves us with the reality that her epilepsy has changed and is worsening. We will see an epi when we get out of the hospital that will hopefully help us find some better control during times of illness. Honestly, I'm terrified. I hate the idea that we could go through this all Fall and Winter everytime she comes down with something.
So, I'll let y'all know if we get out tomorrow. Thanks for caring and all the messages. They have been a great help to us. I hope I can get some time to reply to each individually soon. Please forgive me not being able to. We covet your prayers.
We got some tests results today. It looks like her immune system is working fine. No abnormalities. Basically the immunologist thinks Hannah's getting all these illnesses and will until her system builds an immunity to them. Most kids go through this earlier than Hannah but since
Hannah was never in daycare or out in public alot she didn't do it then. Now, being in school she is catching everything. (((sigh))) Speaking of school, she is READY to go back. Mom isn't ready but she is. LOL!
That leaves us with the reality that her epilepsy has changed and is worsening. We will see an epi when we get out of the hospital that will hopefully help us find some better control during times of illness. Honestly, I'm terrified. I hate the idea that we could go through this all Fall and Winter everytime she comes down with something.
So, I'll let y'all know if we get out tomorrow. Thanks for caring and all the messages. They have been a great help to us. I hope I can get some time to reply to each individually soon. Please forgive me not being able to. We covet your prayers.
Friday, October 3, 2008
In a Room
We're in a room. P-401. I'm glad PICU is there when you need it, but that's one loud and busy place. Hopefully Hannah can sleep tonight.
I've talked with the Pedi that is going to coordinate her on floor care and he is doing some tests on Hannah's immune system in the morning. He didn't feel like her problem was an immunity problem. He feels like it's an epilepsy problem. Said that her epilepsy could just be changing and getting worse. Not something I wanted to hear.
The neuro came by and he could tell I was upset. We talked some about the situation and I felt some better. He's doing a battery of tests in the morning as well. We will be seeing an epileptologist and the geneticist soon.
Really ones not better than the other. Which do you pick? Immunity disorder or worsening epilepsy? We'll have to take what we get and do what we gotta do. I guess at least we'll know. Maybe.
Hannah's doing better and looks good. She's recovering well. Still hasn't stood on her own yet. We'll try all that tomorrow. Our hope tonight is that she gets a good nights sleep. Her CBK levels are going down so that is a good thing. I talked with the ICU doc last night and he explained to me that status epileptus is traumatic on the body. Hannh's recovered well the last time but each time she has an epidsode her body takes a huge hit. If the status's continue her recovery will start taking longer and longer and even permenant damage can take place. Scary stuff.
Please keep her in your prayers. I'll post an updated picutre.
I've talked with the Pedi that is going to coordinate her on floor care and he is doing some tests on Hannah's immune system in the morning. He didn't feel like her problem was an immunity problem. He feels like it's an epilepsy problem. Said that her epilepsy could just be changing and getting worse. Not something I wanted to hear.
The neuro came by and he could tell I was upset. We talked some about the situation and I felt some better. He's doing a battery of tests in the morning as well. We will be seeing an epileptologist and the geneticist soon.
Really ones not better than the other. Which do you pick? Immunity disorder or worsening epilepsy? We'll have to take what we get and do what we gotta do. I guess at least we'll know. Maybe.
Hannah's doing better and looks good. She's recovering well. Still hasn't stood on her own yet. We'll try all that tomorrow. Our hope tonight is that she gets a good nights sleep. Her CBK levels are going down so that is a good thing. I talked with the ICU doc last night and he explained to me that status epileptus is traumatic on the body. Hannh's recovered well the last time but each time she has an epidsode her body takes a huge hit. If the status's continue her recovery will start taking longer and longer and even permenant damage can take place. Scary stuff.
Please keep her in your prayers. I'll post an updated picutre.
News & NIght
The ICU docs just made their rounds. CBK levels are going down. We are going to move to the floor sometime today. I inquired about her continuously being sick since May and made it known we wanted it resolved before we left this hospital. They are putting the in house pediatrician on it when we go to a room and they said they would direct us to the help she needs to resolve these issues. Please pray we get some answers. Status epileptus is hard on the body especially the muscles and the heart is a muscle. If she continues to go status we are looking at some damage eventually that she possibly wouldn't recover from.
Hannah did not sleep much last night at all. She was up most of the night. They brought a 7 wk old baby that had been in a car accident in next to us. When the baby cried Hannah giggled. She has the giggles about the silliest things. There's another little girl that is in isolation by us and when people go in they have to put on gowns and masks. Hannah has just giggled and giggled at their masks. Once I thought she was sound asleep so I laid down on the little bed where I could see her but could rest too. I dozed evidentally because I woke up to her falling in the floor. She was trying to get out of here! LOL! Luckily she didn't hurt herself and no lines were pulled out. She just said, "uh oh whoopsie". Needless to say we've not left her bedside for more than a second again. At least we know she can't stand up yet, I guess. Anyway, nothing real eventful happened through the night.
I did get to rest some early this morning. Thanks to my fabulous husband. He got up around 5 and took my place and I slept from 5 to nearly 9 with a few interuptions. Please continue to pray for Hannah. More than anything I want some answers. I want my girl well.
Hannah did not sleep much last night at all. She was up most of the night. They brought a 7 wk old baby that had been in a car accident in next to us. When the baby cried Hannah giggled. She has the giggles about the silliest things. There's another little girl that is in isolation by us and when people go in they have to put on gowns and masks. Hannah has just giggled and giggled at their masks. Once I thought she was sound asleep so I laid down on the little bed where I could see her but could rest too. I dozed evidentally because I woke up to her falling in the floor. She was trying to get out of here! LOL! Luckily she didn't hurt herself and no lines were pulled out. She just said, "uh oh whoopsie". Needless to say we've not left her bedside for more than a second again. At least we know she can't stand up yet, I guess. Anyway, nothing real eventful happened through the night.
I did get to rest some early this morning. Thanks to my fabulous husband. He got up around 5 and took my place and I slept from 5 to nearly 9 with a few interuptions. Please continue to pray for Hannah. More than anything I want some answers. I want my girl well.
Thursday, October 2, 2008
CPK levels
We are still in PICU. Hannah's CPK levels keep coming back more elevated than the time before. This shows stress on the heart and they will not move her to the floor until those levels go down. As long as they are increasing she needs to be monitored closely. That's the bad news. The good news is that Hannah is off vent, oxygen, cath, and g-tube. She is awake and talking some. Still pretty groggy. We do not know how bad her muscles have taken a hit yet. We know they did because the CPK is muscle related and the tests they did to measure any muscle breakdown showed some. They put her on meds to keep the breakdown from continuing so hopefully they were able to intervene in time. Her fever tried to return earlier but it went back down on it's own before it got too high. That's about all the news I have so far. We have a really good nurse tonight that has Hannah all fixed up for the night. She even helped me comb through the disaster the EEG left in her hair. She's awesome.
Finally Progress
Hopefully, I can post before I get disconnected. In the last 30 minutes they have taken Hannah off the vent, g-tube, and the cath. She's awake and talking a little. She's hoarse of course. They are monitoring her closely. Making sure her blood gases stay good. She's still pretty out of it but steadily coming out. The neuro is going to have them take the EEG off. If everything stays good we may move to the floor this evening or tomorrow morning. They are concerned about the status seizures because they are dangerous and this is the second status episode she's had in the last 2 1/2 months. We'll be talking more about them with the neuro and possibly the epi. I'm going to ask about seeing an immunologistg while we're here. I'll update again soon when I know more.
For those of you that are asking, yes, she can have visitors. Even in PICU. They will only allow 2 at a time to come in. When we go to the floor the number doens't matter. Yes, she can have gifts. The only restriction is on balloons. They cannot be latex.
Please keep praying for Hannah. She's still not out of the woods, but PTL, we're getting closer by the moment.
For those of you that are asking, yes, she can have visitors. Even in PICU. They will only allow 2 at a time to come in. When we go to the floor the number doens't matter. Yes, she can have gifts. The only restriction is on balloons. They cannot be latex.
Please keep praying for Hannah. She's still not out of the woods, but PTL, we're getting closer by the moment.
The night
Hannah rested well through the night. They kept her sedated. Her fever is almost completely gone. She has a few issues due to the fever that they are combatting. One is the break down of muscle tissue. She tested positive for it so they given her medicine to combat that. They are weaning off all the sedatives they were giving her and trying to wake her up. Once they get her awake and she has another good blood gas they will try to take her off the vent to see if she can handle it. I'm waiting on the neuro to come by so we can see what the plan is for today. I'll post again when I have more information. Please keep praying for her.
Wednesday, October 1, 2008
PICU Stay Again
Things are finally settling down some. Hannah woke us up at 5:30 a.m. seizing and by 8:30 a.m. we knew that the ones she was having wasn't going to stop. They were getting more frequent and longer in length. We went to Cooks where she went into status. They stabilized her and got the seizures controlled around 1. We are in PICU at Cook's. Right now they are keeping her sedated because she's on the vent and they don't want to remove it until her blood gases are better. At one point her fever was near 104 so they packed her in ice and was giving her meds to bring it down. It finally started coming down around 7:30. Right now it's nearly normal. They are going to keep her sedated and on the vent through the night and decide waht to do in the morning and see how she is responding. She has opened her eyes and looked at both David and I and responded to us. So, basically we're playing the waiting game again. Not sure what set this off this time. The guys had a mean stomach virus the last couple days and she could have come down with it. She did seem to have a touch of pneaumonia on one of her x-rays too. I know most of this probably makes little sense or sounds like a kindergartner telling it, I'm really close to brain dead. LOL! Forgive me. I'll keep this page update
Seizure day....
We woke up to Hannah seizing at 5:30 a.m. She doesn't have fever. I am waiting until the doctor's office opens so I can call and see what they think. The boys had a stomach virus yesterday so she may be trying to come down with it. I don't know. I'm alone with her today. David can't miss work. They are having lay offs at his job and he needs to try to keep from being one of them. Kyle had tests at college so he couldn't stay with me and Zachary had already missed two days with the virus. I'm always scared. No matter how hard I fight it, I'm terrified. And it's really hard when it's all on you to do whatever is neccessary. Please pray. Thanks.
Subscribe to:
Posts (Atom)
