Well.... Here we go. Daily injections.
Cheyanne's body produces 1 out of the normal 10-12 hormones on her own. In the stimulus test, she produced 5.something of hormone levels. So she qualifies for hormone therapy. Yea? Without this therapy, they do not think she will reach 5' tall. With it, she should grow to be 5' to 5'2". I guess my mom will get her dream of having another family member stay shorter than her! ;•D
So we are taking another growth plate X-ray, waiting for the doctor to fill out all the paperwork that united health care requires and we wait. Then when it all gets approved I get to meet with the nurse and learn how to use the shot machine to give Chey her daily shot of hormones. The positive is that she will only need injections until her growth plates close. .... Only 2 to 2 1/2 years. Oh saweeeeeet. Well this should help me get over my fears of needles and hurting my children!
- Posted using BlogPress from my iPhone
Tuesday, August 24, 2010
Monday, August 16, 2010
On to recovery
We are out of the hospital again. Another test & experience under our belts. Cheyane reports that room service still "rocks" but hospitals are boring. Can't say as I disagree!
The first medicine put her almost right to sleep. Not unusual.
However it did make her blood pressure drop. We got white lips and a bp of 52/30 ( if i remember right. Lots of numbers today.) at the lowest point. She only got 2 blood draws on that before they started flushing her system. I did a whole lot of this:
The second med she did much better on. She wasn't as sleepy and her blood pressure didn't drop as low. So she watched the Last Mimzy ( best line in the movie "Golf is not a sport. It's an obsession." sooooo true!) and I did ....
Yes. Yes I was THAT bored. Chey dozed in in out. But I was monitoring vitals & blood draws so sleeping didn't happen.
The BEST news is that her blood sugar never dropped. Relief. Now we just have to monitor her fluids and make sure she has more than normal.
Her lunch meal. What more could a- soon to be- growing girl need? French fries & ranch dressingb( I wasn't fast enough for them to be included in the picture), strawberries & cantaloupe, root beer, Cheetos and an Oreo cookie shake. The lunch of champions!!
And she definitely is that today. A super champ! ( autographs available upon request..)
- Posted using BlogPress from my iPhone
The first medicine put her almost right to sleep. Not unusual.
However it did make her blood pressure drop. We got white lips and a bp of 52/30 ( if i remember right. Lots of numbers today.) at the lowest point. She only got 2 blood draws on that before they started flushing her system. I did a whole lot of this:
The second med she did much better on. She wasn't as sleepy and her blood pressure didn't drop as low. So she watched the Last Mimzy ( best line in the movie "Golf is not a sport. It's an obsession." sooooo true!) and I did ....
Yes. Yes I was THAT bored. Chey dozed in in out. But I was monitoring vitals & blood draws so sleeping didn't happen.
The BEST news is that her blood sugar never dropped. Relief. Now we just have to monitor her fluids and make sure she has more than normal.
Her lunch meal. What more could a- soon to be- growing girl need? French fries & ranch dressingb( I wasn't fast enough for them to be included in the picture), strawberries & cantaloupe, root beer, Cheetos and an Oreo cookie shake. The lunch of champions!!
And she definitely is that today. A super champ! ( autographs available upon request..)
- Posted using BlogPress from my iPhone
Chey's hormone test
Well a lot has changed in an hour from what I thought I knew to what is actually going to happen. Hospitals and doctors SERIOUSLY need to get together and get on the same page! Way dumb!
Chey will be receiving 2 drug tries today. The results sent to her doctor and then at our appointment next week we'll get the results. One drug is in pill for ( yea!!!) the other is in liquid ( boo hiss). Then they will draw her blood every 30 min instead of every 15. ( yea!) AND I just found out that they are NOT giving her the medicines I would give her. They are stimulus that are put in medicines i would give her. The medicines today are testing in super strong doses to see which one stimulate the growth gland.
With these she runs a small risk of blood sugar drops, and her body fighting against the drugs and getting super exhausted. But it's so small a chance they don't even put a percentage on the chance. We like those odds! ;•D
Here's her room today. Definitely feel that I got gipped out of a nice sleep spot during the video EEG.. Check out THIS sleep couch!
Grrrr... Oh well. Pretty sad when you get emotional over a sleep couch in a hospital room.
The nurse had trouble finding her veins. So they brought out this big machine that glowed green and helped him to find it.
The voids the in green are her veins. So he knew where they should be and he poked, fished, and fished and fished and poked and fished and fished and after 2 minutes and tears from Chey he finally found it. And the blood came piping out. Literally. I think he collected as much as came out all over her and the bed! Had to have been the messiest draw I have seen in many years.
This is after he " cleaned". Nice.
Anyway, we've started the first med which goes for 90 minutes and a blood draw every 30 minutes. Then the next is the same but the dose is given thru iv. Then a final blood draw for blood sugar.
Such an exciting day!! We know your all jealous!
Now we are watching Hannah Montana and "enjoying" our stay. I'll post again when we leave...
.... And just as a reminder this test is to help find the right med to help her grow as well as help her in her maturing process.
Thanks for reading. Cheyanne LOVES to have messages left. She likes to hear about who cares about her and who is keeping track of her journeys. Please leave a comment so that I can read them to her.
- Posted using BlogPress from my iPhone
Chey will be receiving 2 drug tries today. The results sent to her doctor and then at our appointment next week we'll get the results. One drug is in pill for ( yea!!!) the other is in liquid ( boo hiss). Then they will draw her blood every 30 min instead of every 15. ( yea!) AND I just found out that they are NOT giving her the medicines I would give her. They are stimulus that are put in medicines i would give her. The medicines today are testing in super strong doses to see which one stimulate the growth gland.
With these she runs a small risk of blood sugar drops, and her body fighting against the drugs and getting super exhausted. But it's so small a chance they don't even put a percentage on the chance. We like those odds! ;•D
Here's her room today. Definitely feel that I got gipped out of a nice sleep spot during the video EEG.. Check out THIS sleep couch!
Grrrr... Oh well. Pretty sad when you get emotional over a sleep couch in a hospital room.
The nurse had trouble finding her veins. So they brought out this big machine that glowed green and helped him to find it.
The voids the in green are her veins. So he knew where they should be and he poked, fished, and fished and fished and poked and fished and fished and after 2 minutes and tears from Chey he finally found it. And the blood came piping out. Literally. I think he collected as much as came out all over her and the bed! Had to have been the messiest draw I have seen in many years.
This is after he " cleaned". Nice.
Anyway, we've started the first med which goes for 90 minutes and a blood draw every 30 minutes. Then the next is the same but the dose is given thru iv. Then a final blood draw for blood sugar.
Such an exciting day!! We know your all jealous!
Now we are watching Hannah Montana and "enjoying" our stay. I'll post again when we leave...
.... And just as a reminder this test is to help find the right med to help her grow as well as help her in her maturing process.
Thanks for reading. Cheyanne LOVES to have messages left. She likes to hear about who cares about her and who is keeping track of her journeys. Please leave a comment so that I can read them to her.
- Posted using BlogPress from my iPhone
Thursday, August 12, 2010
Test Results
Today's appointment went well. We got a lot of useful information BUT we are still no closer to "fixing" the problem.
The recorded seizures were very clear. Unfortunately, they still consider the area too big to go into and blindly operate. The seizures originate in the Parietal lobe. The yellow area in the pix below:
<---face. Back of head--->
"The parietal lobe is a lobe in the brain. It is positioned above (superior to) the occipital lobe and behind (posterior to) the frontal lobe. This area controls sensory and small motor..." Which kinda explains Cheys issues in some areas. A positive.
Where does this leave us?? Pretty much in the same spot as before the test. So here are the options they gave us.
1) The Dr.s still want the MEG imaging. I got precise clarification on this today. An MRI takes pictures of the brains "electric" waves. The MEG takes pictures of the "magnetic" waves. These are more fine tuned waves. Like the difference between a movie ( MRI) and a 3D movie (MEG). So they want to re-push United Health Care with updated test results to try to get them tocover this. If they won't...
2) We pay for the MEG. Approx. $10,000-12,000. .... Oh yes. Let's just do that because I have that right here in my purse. (very heaving sigh) I wonder if I could hold a bake sale?
3) We forgo the MEG and go in and do the "mapping". To "map" this area means that she would be put under anesthesia, open her skull, place all those electrodes from the video EEG she just went through directly on her brain, tape her up and let her sit in bed, take her off her meds and wait for her to seize again. 3-5 seizures. Again. Some people don't feel those things on their brains, others are in so much pain they are morphined till they seize and have enough seizures the drs are sure what to cut out in the surgery. --ssssaaaawwweeeeaaaaattt! Where do we sign up?? (yes I am totally sick to my stomach by this point).
4) We forget about brain surgery and we go for the VNS (Vegas nerve stimulator). This is basically a pacemaker for your major nerve. Every 3 +\- minutes an electric pulse is sent out and has been proven to help with seizure control. The success statistics: 2%-3% become seizure & medicine free. 60% have a decrease in seizure activity and are able to cut medicine needs. 25% are able to have more control but have to stay in meds. 15% it does nothing for. - lovely news! Thanks for that hope. (insert eye roll here)
5) We do nothing. When her seizures become worse again we can change medicines. 2 new ones have come out and there's about a 20% chance they might work. - Cheyanne is on her 11th medicine/ combo. Remember she's had seizures for 9 years. Yep the medicine is really successful! Whatever.
I do need to let you know the brain surgery success rate. 85% become seizure free. 10% the seizures become maybe one a year and significantly decrease in duration & intensity. 5% have little to no change. - I just LOVE statistics. They are yummy friends!! But I appreciate the honesty of my doctors. They really inform us about everything and then give us their suggestions. And I do like the fact that they sound hopeful, positive, and want in running every test to see this thing at as many angles as possible before we jump into ... Well... Her.
So what do we do? No clue. I really don't. No option is prefect. When we ask Chey she says " I just don't want to be broken anymore. Whatever it takes to make them go away." wow. What do you say to that? We try hard to make her understand that "they" may never go away... But we don't want to dash hopes of normalcy either. I think both Joe and I are slowly giving into the "this is as good as it's going to get" mentality. The mentality of big celebrations of small milestone reached and kept is where we are at. Like she can remember how to tell time on a clock but doesn't understand its passing around her. But it is truly hard to accept that your child, who you love to death but are trying to teach to be self sufficient, is never going to be able to be that...... Free.....
- Posted using BlogPress from my iPhone
The recorded seizures were very clear. Unfortunately, they still consider the area too big to go into and blindly operate. The seizures originate in the Parietal lobe. The yellow area in the pix below:
<---face. Back of head--->
"The parietal lobe is a lobe in the brain. It is positioned above (superior to) the occipital lobe and behind (posterior to) the frontal lobe. This area controls sensory and small motor..." Which kinda explains Cheys issues in some areas. A positive.
Where does this leave us?? Pretty much in the same spot as before the test. So here are the options they gave us.
1) The Dr.s still want the MEG imaging. I got precise clarification on this today. An MRI takes pictures of the brains "electric" waves. The MEG takes pictures of the "magnetic" waves. These are more fine tuned waves. Like the difference between a movie ( MRI) and a 3D movie (MEG). So they want to re-push United Health Care with updated test results to try to get them tocover this. If they won't...
2) We pay for the MEG. Approx. $10,000-12,000. .... Oh yes. Let's just do that because I have that right here in my purse. (very heaving sigh) I wonder if I could hold a bake sale?
3) We forgo the MEG and go in and do the "mapping". To "map" this area means that she would be put under anesthesia, open her skull, place all those electrodes from the video EEG she just went through directly on her brain, tape her up and let her sit in bed, take her off her meds and wait for her to seize again. 3-5 seizures. Again. Some people don't feel those things on their brains, others are in so much pain they are morphined till they seize and have enough seizures the drs are sure what to cut out in the surgery. --ssssaaaawwweeeeaaaaattt! Where do we sign up?? (yes I am totally sick to my stomach by this point).
4) We forget about brain surgery and we go for the VNS (Vegas nerve stimulator). This is basically a pacemaker for your major nerve. Every 3 +\- minutes an electric pulse is sent out and has been proven to help with seizure control. The success statistics: 2%-3% become seizure & medicine free. 60% have a decrease in seizure activity and are able to cut medicine needs. 25% are able to have more control but have to stay in meds. 15% it does nothing for. - lovely news! Thanks for that hope. (insert eye roll here)
5) We do nothing. When her seizures become worse again we can change medicines. 2 new ones have come out and there's about a 20% chance they might work. - Cheyanne is on her 11th medicine/ combo. Remember she's had seizures for 9 years. Yep the medicine is really successful! Whatever.
I do need to let you know the brain surgery success rate. 85% become seizure free. 10% the seizures become maybe one a year and significantly decrease in duration & intensity. 5% have little to no change. - I just LOVE statistics. They are yummy friends!! But I appreciate the honesty of my doctors. They really inform us about everything and then give us their suggestions. And I do like the fact that they sound hopeful, positive, and want in running every test to see this thing at as many angles as possible before we jump into ... Well... Her.
So what do we do? No clue. I really don't. No option is prefect. When we ask Chey she says " I just don't want to be broken anymore. Whatever it takes to make them go away." wow. What do you say to that? We try hard to make her understand that "they" may never go away... But we don't want to dash hopes of normalcy either. I think both Joe and I are slowly giving into the "this is as good as it's going to get" mentality. The mentality of big celebrations of small milestone reached and kept is where we are at. Like she can remember how to tell time on a clock but doesn't understand its passing around her. But it is truly hard to accept that your child, who you love to death but are trying to teach to be self sufficient, is never going to be able to be that...... Free.....
- Posted using BlogPress from my iPhone
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