Tuesday, May 31, 2011
Sunday, May 29, 2011
Stronger
This week has just been one of those, when it comes to Cole. He has needed rescue meds every day but Tuesday, with no apparent illness. This, has never happened. It is something that would have most likely sent a former version of myself into a depressed state. However, I have felt more empowered this week than hopeless.
I think things started to change about a month ago. After that first liberating experience of continuing to do what we had planned on, after a major seizure, we have been approaching things differently. I can only accredit this change in myself to time and support from other warriors. Now, occasionally I have just been stupid and tried to risk things that were SO not worth it. Case in point, I took Cole to the store for the first time in forever, it was a horrible experience. The only thing we really got out of it was groceries, and I could have sent Brian to get them on his way home. However, sometimes you just have to test your boundaries and see what is going to happen. Some days he can handle being in public, other days, not so much. Yet, doing something that is worth the risk is becoming easier to imagine.
In between things like our printer breaking for the second time, losing one of Cole's FL-41 lenses (and thankfully recovering it hours later), I have had plans. Like, real plans! For those of you who know me personally, you understand what this means to me. I'm a list maker; an organizer. Living for the last year and a half or so by the seat of my pants has not been easy. However, it has also taught me to have flexibility...and that the world won't end if I am 5 minutes late (well, maybe it won't). I planned on having some lovely ladies over to my home one night. Cole was having clusters, but he was in his father's capable hands. We planned on breaking out of the house once or twice while we had company in town. Cole had major seizures on both occasions, but we STAYED. This was a freakishly tough/great experience. I had my doubts if we would even leave the house after the week that Cole has had. He is still not eating well. I took him in for a blood draw on Thursday and they could only get half of a tube. He needed 6. They were closed on Fri, Mon is a holiday, so we have to try again on Tues. We need to see where all of his levels are before we can move forward with an action plan. I have been so confused. Do we go back on the full ketogenic diet? Do we up the depakote? Do we up the Keppra? Do we lower something? Do we? Do we? Do we? It has been mentally exhausting.
I am so grateful to Brian's brother, who is willing to put his pleasure vacation on the back burner. He didn't get to go to an amusement park, or museums, or many of the other attractions that one would come to our area to see. He wanted to spend as much time with his nephews as possible, taking into account Cole's restrictions. That is saying a lot for a single guy. Cole really misses him.
He even watched Cole for 3 hours so that Brian and I could go to church together. It was wonderful! People were worried. They came up and asked if Cole was okay and wondered why we were together! :) Can't wait for those nursing hours to be put to good use! It was also nice that they noticed.
We went back and forth on what to do on Saturday since the week had been rough and Cole was still struggling on Friday night. We eventually settled on trying out a beach that is within an hour of our home. I brought every thing I could think of to make it easier. Note to self: purchase a beach umbrella, immediately. We were not there for even 20 minutes before the excitement, light and noise got to my boy. He had a full on tonic clonic in the sand, with his O2 dropping into the 60s. I sent Brian back to the car for the oxygen tank, low and behold we didn't have any tubing! It's a good thing that he popped back up into semi-normal range within a few minutes. The seizure took two rescue meds to stop, but we just decided that we were going to tough it out. Cole wanted to be up and going fairly quickly, but did not want anything to do with the sand or the water. So he just stumbled/wandered for a while with his dad tagging along to make sure he was okay. It probably helped that a family near us had their disabled daughter in the bay. Her pink wheelchair was parked right on the sand and they carried her in to the surf. She was definitely more disabled than Cole and was older too. Probably around 11 or 12. However, I could still see the joy in her face while the waves bobbed her body up and down as two of her loved ones carried her in the brackish water. Her squeals of delight made me smile and think, "If they can do it, so can I".
I remember our friends from Australia recounting the story of their daughter having two major seizures on an airplane over the Pacific Ocean. I seriously thought they were crazy. Who would take a risk like that? I also remember talking to other parents about how they went hiking, swimming and even camping with their Dravet kids. I thought to myself, "It is going to take me a long time before I get there."
I am just proving to myself that I am stronger than I thought. Well, Cole is proving it to me too. After the meds wore off, he got in the water and played like any other three year old would. He was doing so well that we even went to a small museum afterwards. Risky? Most certainly. However, it was so good to just be together, doing something besides wanting to pull my hair out.
Brian and his brothers are off at the National Memorial Day Concert on the lawn of the capitol and I am here at home with Cole. Tomorrow, there will probably also be some activities that Cole and I won't be able to attend; but this weekend, we have been more active than we have been in probably a year. It had some highs and some lows. I'm not ready to fly over the ocean, or even drive in the car for more than an hour. There is also no way that I am going to adventure somewhere that doesn't have a decent hospital close by. Yet, I think that we have proved to ourselves that Mini-Hulk is so resilient that he is stronger than we think. Maybe I am too.
I think things started to change about a month ago. After that first liberating experience of continuing to do what we had planned on, after a major seizure, we have been approaching things differently. I can only accredit this change in myself to time and support from other warriors. Now, occasionally I have just been stupid and tried to risk things that were SO not worth it. Case in point, I took Cole to the store for the first time in forever, it was a horrible experience. The only thing we really got out of it was groceries, and I could have sent Brian to get them on his way home. However, sometimes you just have to test your boundaries and see what is going to happen. Some days he can handle being in public, other days, not so much. Yet, doing something that is worth the risk is becoming easier to imagine.
In between things like our printer breaking for the second time, losing one of Cole's FL-41 lenses (and thankfully recovering it hours later), I have had plans. Like, real plans! For those of you who know me personally, you understand what this means to me. I'm a list maker; an organizer. Living for the last year and a half or so by the seat of my pants has not been easy. However, it has also taught me to have flexibility...and that the world won't end if I am 5 minutes late (well, maybe it won't). I planned on having some lovely ladies over to my home one night. Cole was having clusters, but he was in his father's capable hands. We planned on breaking out of the house once or twice while we had company in town. Cole had major seizures on both occasions, but we STAYED. This was a freakishly tough/great experience. I had my doubts if we would even leave the house after the week that Cole has had. He is still not eating well. I took him in for a blood draw on Thursday and they could only get half of a tube. He needed 6. They were closed on Fri, Mon is a holiday, so we have to try again on Tues. We need to see where all of his levels are before we can move forward with an action plan. I have been so confused. Do we go back on the full ketogenic diet? Do we up the depakote? Do we up the Keppra? Do we lower something? Do we? Do we? Do we? It has been mentally exhausting.
I am so grateful to Brian's brother, who is willing to put his pleasure vacation on the back burner. He didn't get to go to an amusement park, or museums, or many of the other attractions that one would come to our area to see. He wanted to spend as much time with his nephews as possible, taking into account Cole's restrictions. That is saying a lot for a single guy. Cole really misses him.
He even watched Cole for 3 hours so that Brian and I could go to church together. It was wonderful! People were worried. They came up and asked if Cole was okay and wondered why we were together! :) Can't wait for those nursing hours to be put to good use! It was also nice that they noticed.We went back and forth on what to do on Saturday since the week had been rough and Cole was still struggling on Friday night. We eventually settled on trying out a beach that is within an hour of our home. I brought every thing I could think of to make it easier. Note to self: purchase a beach umbrella, immediately. We were not there for even 20 minutes before the excitement, light and noise got to my boy. He had a full on tonic clonic in the sand, with his O2 dropping into the 60s. I sent Brian back to the car for the oxygen tank, low and behold we didn't have any tubing! It's a good thing that he popped back up into semi-normal range within a few minutes. The seizure took two rescue meds to stop, but we just decided that we were going to tough it out. Cole wanted to be up and going fairly quickly, but did not want anything to do with the sand or the water. So he just stumbled/wandered for a while with his dad tagging along to make sure he was okay. It probably helped that a family near us had their disabled daughter in the bay. Her pink wheelchair was parked right on the sand and they carried her in to the surf. She was definitely more disabled than Cole and was older too. Probably around 11 or 12. However, I could still see the joy in her face while the waves bobbed her body up and down as two of her loved ones carried her in the brackish water. Her squeals of delight made me smile and think, "If they can do it, so can I".
I remember our friends from Australia recounting the story of their daughter having two major seizures on an airplane over the Pacific Ocean. I seriously thought they were crazy. Who would take a risk like that? I also remember talking to other parents about how they went hiking, swimming and even camping with their Dravet kids. I thought to myself, "It is going to take me a long time before I get there." I am just proving to myself that I am stronger than I thought. Well, Cole is proving it to me too. After the meds wore off, he got in the water and played like any other three year old would. He was doing so well that we even went to a small museum afterwards. Risky? Most certainly. However, it was so good to just be together, doing something besides wanting to pull my hair out.
Brian and his brothers are off at the National Memorial Day Concert on the lawn of the capitol and I am here at home with Cole. Tomorrow, there will probably also be some activities that Cole and I won't be able to attend; but this weekend, we have been more active than we have been in probably a year. It had some highs and some lows. I'm not ready to fly over the ocean, or even drive in the car for more than an hour. There is also no way that I am going to adventure somewhere that doesn't have a decent hospital close by. Yet, I think that we have proved to ourselves that Mini-Hulk is so resilient that he is stronger than we think. Maybe I am too.
Thursday, May 26, 2011
Ebb and Flow
Just like the waves, change is constant. In and out, good days and bad days.
In exchange for our great weekend, we have been rewarded with a couple of tough days.
Cole is still not eating very much. I'm pushing fluids through his tube, so he is hydrated, but I'm wondering how much longer we can hold out, waiting for him to decide that he wants food again.
After all of that stress about, "How am I supposed to send seizure shirts to the dog if he isn't having big seizures?"; I got two in 48 hours. Lucky. I should be careful what I wish for! I actually said, "This is great!" when he started seizing. Oy! I have issues. Now if I could only make it to Fed Ex within 24 hours :)
Yesterday we finally had that pre-school testing we have been waiting for since we arrived. Cole performed like a champ...he was perfectly charming, social and carrying on a full conversation. This kid is going to be the demise of me. How can he turn on the "I'm perfect, I don't have a disability" switch when I need him to show his true colors most? Why couldn't he have acted like he did when the Medicaid Waiver people were here? Oh, I'll never know. All in all, we might have to go through the same thing here that we did in Utah. His scores are just barely borderline. They are not sure if he will qualify. Well, that is because you caught him on a good day, on a new medication. Tomorrow will be different. Next week will be different, and so on. Now we just hurry up and wait for their decision. At least the testing staff here are nice, huge plus!
Last night I had a little get-together and all of the new people sent Cole into clusters. We tried out the Valium by g tube and it worked great! Walking, talking, just dandy. I'm sure feeling warm and fuzzy as compared to dizzy and weird is a plus in any one's book! I was so behind in getting things together. Brian's train got stuck on the track, sending him home later than usual. Cole also decided to seize Tues night, canceling my plans for prep, due to me having to watch him stumble around in a post ictal haze. Then, Wed morning, we were at the school testing, until just an hour or so before people were supposed to arrive. Hey, this is our life! My cupcakes got ruined, I was still running around making food and the table was not even set when people started coming in; but I've just learned to roll with it. In my previous life, I would have been so high strung about everything going perfect, that I wouldn't have enjoyed myself. Believe me, there are worse things in life than serving food that doesn't look straight out of a magazine shoot! Or having your kitchen be cluttered. As long as it tastes good and eventually is set out, that is all you need to worry about. It was great for me to have a conversation with adult women. I have really missed my friends, so it is great to finally be making some new ones.
Hopefully, Cole can have another great weekend. His favorite Uncle is coming into town for a couple of days. Seeing him in person is going to be much more exciting than talking to him on the phone at least twice a day (which he does every day). We'll probably take some risks this weekend to play with him. Let's just hope that Cole's brain decides to cooperate. If it doesn't, then we'll roll with that too.
In exchange for our great weekend, we have been rewarded with a couple of tough days.
Cole is still not eating very much. I'm pushing fluids through his tube, so he is hydrated, but I'm wondering how much longer we can hold out, waiting for him to decide that he wants food again.
After all of that stress about, "How am I supposed to send seizure shirts to the dog if he isn't having big seizures?"; I got two in 48 hours. Lucky. I should be careful what I wish for! I actually said, "This is great!" when he started seizing. Oy! I have issues. Now if I could only make it to Fed Ex within 24 hours :)
Yesterday we finally had that pre-school testing we have been waiting for since we arrived. Cole performed like a champ...he was perfectly charming, social and carrying on a full conversation. This kid is going to be the demise of me. How can he turn on the "I'm perfect, I don't have a disability" switch when I need him to show his true colors most? Why couldn't he have acted like he did when the Medicaid Waiver people were here? Oh, I'll never know. All in all, we might have to go through the same thing here that we did in Utah. His scores are just barely borderline. They are not sure if he will qualify. Well, that is because you caught him on a good day, on a new medication. Tomorrow will be different. Next week will be different, and so on. Now we just hurry up and wait for their decision. At least the testing staff here are nice, huge plus!
Last night I had a little get-together and all of the new people sent Cole into clusters. We tried out the Valium by g tube and it worked great! Walking, talking, just dandy. I'm sure feeling warm and fuzzy as compared to dizzy and weird is a plus in any one's book! I was so behind in getting things together. Brian's train got stuck on the track, sending him home later than usual. Cole also decided to seize Tues night, canceling my plans for prep, due to me having to watch him stumble around in a post ictal haze. Then, Wed morning, we were at the school testing, until just an hour or so before people were supposed to arrive. Hey, this is our life! My cupcakes got ruined, I was still running around making food and the table was not even set when people started coming in; but I've just learned to roll with it. In my previous life, I would have been so high strung about everything going perfect, that I wouldn't have enjoyed myself. Believe me, there are worse things in life than serving food that doesn't look straight out of a magazine shoot! Or having your kitchen be cluttered. As long as it tastes good and eventually is set out, that is all you need to worry about. It was great for me to have a conversation with adult women. I have really missed my friends, so it is great to finally be making some new ones.
Hopefully, Cole can have another great weekend. His favorite Uncle is coming into town for a couple of days. Seeing him in person is going to be much more exciting than talking to him on the phone at least twice a day (which he does every day). We'll probably take some risks this weekend to play with him. Let's just hope that Cole's brain decides to cooperate. If it doesn't, then we'll roll with that too.
Monday, May 23, 2011
Love Letter To Depakote
Dear Depakote Sprinkles,
I just want you to know how you have made the last few days have the ultimate silver lining. See Depakote, I've been in a funk. You know that I always try to keep it real, right? Sometimes I have been downright blue lately, occasionally just bursting into tears without even knowing why. However, my little boy has been able to experience some things this week that all little boys should, because of you. This is what has been keeping me going.
He has been outside more in the last week than he has in the last year. We did yard work as a family this weekend. He even pushed around his toy lawnmower...you know, the one he discovered in the hospital so long ago? That has never happened to us. We were out there for four hours, Depakote! He is talking more than ever and saying hilarious stuff like, "Good morning, Captain Mommy!" All because of you. Well, you and a whole bunch of other stuff like elevation, diet and a variety of cocktailed medications. Still Depakote, you are something special right now.
Even when he had his first big seizure in 4 weeks yesterday, you were working your magic. His oxygen stayed up, he did not go unconscious. He only needed one dose of rescue medication, and it was only about 10 minutes long (instead of the usual 20). This, was a very great thing.
I know that it won't always be this way between us. Alas, my pronouncement of love may be very premature. The whole going anorexic thing could really put a damper on this. Oh, and the possibility of you damaging his liver, like you often do to others. Or the low platelets. Plus, you are kind of difficult to administer. Yes, Depakote, we may not be close for long, but I want you to know that you are giving a special boy a better life right now. Hopefully, you can stick around for a while.
Love,
Cole's Mommy
I just want you to know how you have made the last few days have the ultimate silver lining. See Depakote, I've been in a funk. You know that I always try to keep it real, right? Sometimes I have been downright blue lately, occasionally just bursting into tears without even knowing why. However, my little boy has been able to experience some things this week that all little boys should, because of you. This is what has been keeping me going.
He has been outside more in the last week than he has in the last year. We did yard work as a family this weekend. He even pushed around his toy lawnmower...you know, the one he discovered in the hospital so long ago? That has never happened to us. We were out there for four hours, Depakote! He is talking more than ever and saying hilarious stuff like, "Good morning, Captain Mommy!" All because of you. Well, you and a whole bunch of other stuff like elevation, diet and a variety of cocktailed medications. Still Depakote, you are something special right now.
Even when he had his first big seizure in 4 weeks yesterday, you were working your magic. His oxygen stayed up, he did not go unconscious. He only needed one dose of rescue medication, and it was only about 10 minutes long (instead of the usual 20). This, was a very great thing.
I know that it won't always be this way between us. Alas, my pronouncement of love may be very premature. The whole going anorexic thing could really put a damper on this. Oh, and the possibility of you damaging his liver, like you often do to others. Or the low platelets. Plus, you are kind of difficult to administer. Yes, Depakote, we may not be close for long, but I want you to know that you are giving a special boy a better life right now. Hopefully, you can stick around for a while.
Love,
Cole's Mommy
Sunday, May 22, 2011
A View Inside MCH
I'll finally get to that mini-tour of Miami Childrens Hospital. We really loved all of the beautiful murals. Each one was unique. This one is outside of the playroom on the 3rd floor.
They even painted small corners.
Cole liked the lights around the ceiling at the main entrance.
The colors were all so beautiful.
This was on our floor. The little shiny circles are mirrors.
Cole loved the Radio Lollipop staff and their contests. It was fun to have a live radio show coming from down the hall!
Cole really loved exploring the halls once he was unhooked. He of course gravitated towards the fish tank in the neurosurgery waiting room. The boy loves his animals!
Here is a picture of the waiting room at the Brain Institute, where they hold the Dravet Clinic. Notice how it is white, without many patterns. Still a great room though.
All of the elevators are decorated different.
This is down in the main lobby.
Here is another one of the murals that incorporates mirrors. I really like how they have used so many different mediums in the entire hospital.
This is one of my favorites. I've always loved flamingos.
All in all, the entire hospital was decorated beautifully. This is just a small preview of the thought and care that has been put into its design.
They even painted small corners.
Cole liked the lights around the ceiling at the main entrance.
The colors were all so beautiful.
This was on our floor. The little shiny circles are mirrors.
Cole loved the Radio Lollipop staff and their contests. It was fun to have a live radio show coming from down the hall!
Cole really loved exploring the halls once he was unhooked. He of course gravitated towards the fish tank in the neurosurgery waiting room. The boy loves his animals!
Here is a picture of the waiting room at the Brain Institute, where they hold the Dravet Clinic. Notice how it is white, without many patterns. Still a great room though.
All of the elevators are decorated different.
This is down in the main lobby.
Here is another one of the murals that incorporates mirrors. I really like how they have used so many different mediums in the entire hospital.
This is one of my favorites. I've always loved flamingos.
All in all, the entire hospital was decorated beautifully. This is just a small preview of the thought and care that has been put into its design.
Thursday, May 19, 2011
Contradiction
Hey peeps, I know I promised pictures and a video. Sorry!
As a testament to me losing my mind...this week has turned out to be one after another one of those manifestations where what should be happening, and what really happens are totally opposite.
Med changes are always hard on every body. It's not just the meds though that are being inconsistent. Let's start with Monday. We did not get in bed until after 1 am due to flight delays. We were an extra hour in the air and an extra half hour on the ground. Let's just say, Cole did not take it very well. He slept in, which was great! The depakote has definitely made him sleepier. His naps are longer and he was sleeping through the night most nights since we have gotten back. However, once again that has changed. Darn full moon! Anyway, back to Monday-I get up and throw on some sweats and do a quick brush of my teeth so that I am at least properly dressed when the oxygen people come to pick up their very expensive concentrator that we did not even end up using. Having the peace of mind that it was available was great, but I don't know how much more our wallet can handle when it comes to travel oxygen. I am in the midst of an appeal with the insurance company. Really guys, it will be cheaper for you if you just pay for one. Then I can stop submitting reimbursements and appeals.Try to make a bean counter believe that one.
So, Cole is still roaming in his pajamas, which are stained since everything else is in the suitcase, still packed, or in the laundry. I hear a knock on the door and totally assume it is the oxygen company. Low and behold, it is the Medicaid Waiver worker. WHAT?! They were not supposed to come until next Monday...at least that is what my phone said. I have been waiting for this day for a month and a half now. Surely, they are here on the wrong day? Nope. I ushered her in with a shocked look on my face and told her to sit down. I did not have a single thing ready for our meeting, but I was not going to lose my appointment. I knew that they could not fit us in again until the end of June. Needless to say, I scrambled and stumbled around trying to gather information for the caseworker and the nurse that showed up later. Cole put on a terrific show and they saw us in all of our glory. He hit me, spit on me, broke two things, threw other objects, spilled stuff on my rug, yelled at me to take off his clothes, etc. He proved loud and clear that he is a handful. At the end of the meeting, the worker said that she had no doubt we would be approved and she has never had anyone that has been rejected that she personally felt qualified. That was wonderful news to my ears! A definitely different Cole than the charming, flirtatious boy from Miami. It will still take some time to get all of the nurses lined up and interviewed, but we are thrilled! I asked her advice on what agency to go with. None of the agencies she prefers are covered by my insurance or have school contracts, so it looks like I will be working with more than one agency. We still do not know how many Personal Care Assistant hours we will have, the Medicaid board approves that. Hopefully, it will be at least 4 hours a day for the weekdays. Maybe I can start cooking more than twice a week again! :) The nursing will only be 240 hours a year, which means less than a day per month and you have to access hours each month or you lose your place on the waiver. However, that is at least one night a month that Brian and I could go somewhere and know that we had a totally qualified, free caregiver for Cole.
We have noticed on the depakote that Cole has reverted back to not eating. Seriously, he could take or leave food. We are right back to where we were before the g tube, but bless it-we are not in the hospital for failure to thrive. He is not dehydrated and is still getting all of his meds and supplements. It really is one of the smartest decisions we have ever made for his care. I am really worried about him not eating again. This means re-adjusting the diet, probably re-adjusting the Keppra and a whole bunch of other things. How am I going to know what is really making the difference? It is hard to tell when you change a bunch of things at one time. Get this, here comes the contradiction...depakote is supposed to be an appetite stimulant. Hey, we are talking about Mini Hulk here, he defies all "norms". The doctors are as confused as I am and the only answer that I am getting right now is to liberalize the diet he is on right now, which is more of a Modified Atkins. They want him to eat more fruit and starchy vegetables. He's not even eating his favorite foods, how am I going to get him to eat more than usual?
Right now our treatment is:
Keppra 800 mg (400 morning and night)
Depakote 500 mg (250 morning and night)
Nano VM Multivitamin powder (replacing his Calcium, magnesium, old multivitamin, K phos)
Carnitor 7.5 mL
Vitamin D 800 IU
and a skewampus version of the ketogenic diet
I know that it is not the multivitamin causing this because we did not start it until yesterday. He has not really eaten since we started the depakote, so I can only name it as the changing factor. For something that sometimes makes people gain too much weight, it sure is working opposite on my boy. The doctors said that I should just tube feed him, but I am not ready for that yet. Just because he has a g tube doesn't mean that I have to use it to feed him. I think that he has the potential to just become anorexic and stop eating completely. It has happened to two of my close friends children, why not?
Really, there are so many things lately that are supposed to be working one way and end up doing the opposite. SO, I guess the theme of this week is contradiction. Maybe next week can be something like beating the odds? We have almost gone a full month without rescue meds for a status seizure! That, has not happened in over a year. Which is kind of hilarious, because we are supposed to be sending shirts to his seizure dog every week. For the first time ever, we WANT him to have at least one big seizure a week! The more shirts we send, the better they can train the dog. Cole is also speaking more clearly than he ever has and is picking up new words daily. We were worried the depakote would impair his speech. My little contradiction:)
As a testament to me losing my mind...this week has turned out to be one after another one of those manifestations where what should be happening, and what really happens are totally opposite.
Med changes are always hard on every body. It's not just the meds though that are being inconsistent. Let's start with Monday. We did not get in bed until after 1 am due to flight delays. We were an extra hour in the air and an extra half hour on the ground. Let's just say, Cole did not take it very well. He slept in, which was great! The depakote has definitely made him sleepier. His naps are longer and he was sleeping through the night most nights since we have gotten back. However, once again that has changed. Darn full moon! Anyway, back to Monday-I get up and throw on some sweats and do a quick brush of my teeth so that I am at least properly dressed when the oxygen people come to pick up their very expensive concentrator that we did not even end up using. Having the peace of mind that it was available was great, but I don't know how much more our wallet can handle when it comes to travel oxygen. I am in the midst of an appeal with the insurance company. Really guys, it will be cheaper for you if you just pay for one. Then I can stop submitting reimbursements and appeals.Try to make a bean counter believe that one.
So, Cole is still roaming in his pajamas, which are stained since everything else is in the suitcase, still packed, or in the laundry. I hear a knock on the door and totally assume it is the oxygen company. Low and behold, it is the Medicaid Waiver worker. WHAT?! They were not supposed to come until next Monday...at least that is what my phone said. I have been waiting for this day for a month and a half now. Surely, they are here on the wrong day? Nope. I ushered her in with a shocked look on my face and told her to sit down. I did not have a single thing ready for our meeting, but I was not going to lose my appointment. I knew that they could not fit us in again until the end of June. Needless to say, I scrambled and stumbled around trying to gather information for the caseworker and the nurse that showed up later. Cole put on a terrific show and they saw us in all of our glory. He hit me, spit on me, broke two things, threw other objects, spilled stuff on my rug, yelled at me to take off his clothes, etc. He proved loud and clear that he is a handful. At the end of the meeting, the worker said that she had no doubt we would be approved and she has never had anyone that has been rejected that she personally felt qualified. That was wonderful news to my ears! A definitely different Cole than the charming, flirtatious boy from Miami. It will still take some time to get all of the nurses lined up and interviewed, but we are thrilled! I asked her advice on what agency to go with. None of the agencies she prefers are covered by my insurance or have school contracts, so it looks like I will be working with more than one agency. We still do not know how many Personal Care Assistant hours we will have, the Medicaid board approves that. Hopefully, it will be at least 4 hours a day for the weekdays. Maybe I can start cooking more than twice a week again! :) The nursing will only be 240 hours a year, which means less than a day per month and you have to access hours each month or you lose your place on the waiver. However, that is at least one night a month that Brian and I could go somewhere and know that we had a totally qualified, free caregiver for Cole.
We have noticed on the depakote that Cole has reverted back to not eating. Seriously, he could take or leave food. We are right back to where we were before the g tube, but bless it-we are not in the hospital for failure to thrive. He is not dehydrated and is still getting all of his meds and supplements. It really is one of the smartest decisions we have ever made for his care. I am really worried about him not eating again. This means re-adjusting the diet, probably re-adjusting the Keppra and a whole bunch of other things. How am I going to know what is really making the difference? It is hard to tell when you change a bunch of things at one time. Get this, here comes the contradiction...depakote is supposed to be an appetite stimulant. Hey, we are talking about Mini Hulk here, he defies all "norms". The doctors are as confused as I am and the only answer that I am getting right now is to liberalize the diet he is on right now, which is more of a Modified Atkins. They want him to eat more fruit and starchy vegetables. He's not even eating his favorite foods, how am I going to get him to eat more than usual?
Right now our treatment is:
Keppra 800 mg (400 morning and night)
Depakote 500 mg (250 morning and night)
Nano VM Multivitamin powder (replacing his Calcium, magnesium, old multivitamin, K phos)
Carnitor 7.5 mL
Vitamin D 800 IU
and a skewampus version of the ketogenic diet
I know that it is not the multivitamin causing this because we did not start it until yesterday. He has not really eaten since we started the depakote, so I can only name it as the changing factor. For something that sometimes makes people gain too much weight, it sure is working opposite on my boy. The doctors said that I should just tube feed him, but I am not ready for that yet. Just because he has a g tube doesn't mean that I have to use it to feed him. I think that he has the potential to just become anorexic and stop eating completely. It has happened to two of my close friends children, why not?
Really, there are so many things lately that are supposed to be working one way and end up doing the opposite. SO, I guess the theme of this week is contradiction. Maybe next week can be something like beating the odds? We have almost gone a full month without rescue meds for a status seizure! That, has not happened in over a year. Which is kind of hilarious, because we are supposed to be sending shirts to his seizure dog every week. For the first time ever, we WANT him to have at least one big seizure a week! The more shirts we send, the better they can train the dog. Cole is also speaking more clearly than he ever has and is picking up new words daily. We were worried the depakote would impair his speech. My little contradiction:)
Sunday, May 15, 2011
This Confusion Has Been Brought To You By Blogger
Sorry to those of you who subscribe to us through a reader. Blogger had a lot of issues this week. I have been really happy with blogspot and know that there are ups and downs with any server. However, two whole days of malfunctions was a little rough. I wish it could have happened during a "maybe blog once a week" period, instead of the three posts a day time we've been having lately, but que sera sera.
I lost all of the comments, right dates and labels so I had to go back and tweak some things. Once again, sorry for all of the repeats in your reader...we're back in business now!
Soon to come, the remaining posts from Miami and maybe even a video :)
I lost all of the comments, right dates and labels so I had to go back and tweak some things. Once again, sorry for all of the repeats in your reader...we're back in business now!
Soon to come, the remaining posts from Miami and maybe even a video :)
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