So I'm writing a quick little note to let you all know that the sleep study is today! Yeah!! Been waiting for this day for forever it feels like.
Last week at our consultation with the new doctor, the nurse told me to wait around the house and she will call to let me know when the bed opens up for him. That way, I won't have to sit around the hospital all day until the bed becomes available. Well it's almost noon and they still haven't called. FRUSTRATING!
I'm so ready for this to just be done already, and get the results and change his medicine. Because I'm telling you, if I were a betting (wo)man, I would bet all that I have that that is what's gonna happen. But until then, the little guy is just seizing every day. :(
So, here's to waiting--not patiently! I don't know if it's getting older, or everything we've been through the past two years almost, but my patience is just about gone! I think it's time we move to the beach or some exotic island and maybe I can relax there. Sounds like a plan to me! :)
And one more thing.. I have only got one picture so far, from Rick "I love you". So people, get on this project already. I can't do it without you!
August 31, 2010
August 28, 2010
The Funk
So I know I've kinda been avoiding you all, but I've just been in some sort of funk lately. Things haven't really gotten worse, but they sure haven't gotten any better either.
This week we saw our new neurologist. Poor guy still thinks we want to see our other doc still. I'd love to be a fly on the wall when he calls her with the results of the test and she tells him she wants nothing to do with us. But anyway, that's enough of that. There's nothing I can do about that situation now so I'm just leaving it be. Everything happens for a reason right? At least that's what I've always believed and what I've been holding on to ever since my man was born.
So the appointment was basically just an assessment. I really thought Lucas was going to seize in front of him because I kept him up during his usual nap time and he finally fell asleep while we were waiting on the doctor and I had to wake him up--I couldn't have set that up better if I tried any harder--but to no avail. He did not seize, in fact, he awoke laughing and smiling at the doctor! Well that's a first.
So, of course it's always something...as I'm talking to the doctor I start to smell something funny. Let me tell you parents, no matter where you are, when you smell something funny, always check the diaper right away, otherwise, you just might get pooped on...twice! Yes I said twice. And yes, this was during the assessment. So as I'm trying to change his diaper, take his clothes off, clean my shorts, clean their table and floor, I know I'm forgetting questions I have and probably leaving out some information because all I could think was, I smell like poop...I can't wait to go home and change.
Well, the doc ended up getting some bloodwork done to check his medicine levels since the ER doctor upped the meds (to make sure the dosage is working). Until he gets the results from that and from the sleep study that we're finally doing this Tuesday, he's not changing the meds. This kinda made me sad. Not that I have anything against this medicine, because it has kept him seizure free while he's awake, but it's not controlling these breakthrough (sleeping) seizures at all and I know he will continue to have them until we get the right medicine. And that means, more potential damage to his brain and possibly physical function. Plus, the phenobarb is making him very aggressive and even a little mean at times. If he's not in a good mood, or if he's sleepy, he will literally swat at you and try and kick you. Plus he cries a whole lot more. Not that I should complain, because he's pretty much been a complete angel up until now, but I just worry that he knows he's feeling off right now.
One little bit of GREAT news is that we finally got the approval for his sit to stander! I called the lady and it should be here within two weeks!!! I can not wait. We've waited so long for this, and hopefully this will put him on the road to building those leg muscles up even more so we can work on walking!! He's been doing so great in the exersaucer so I think he will adjust to this pretty well.
Lucas has been doing a little better in therapy lately. The OT that comes to the house has been around the last three weeks in a row so he's finally getting used to her and had an awesome session this week. Unfortunately, it's not going quite as great with the OT we travel to Metairie to see every Thursday. We've only been able to go every other week for the past two or three sessions so he's acting all shy with her too now. It's so frustrating, because this used to be the one he would do awesome at every time, and lately we've been fighting tears, screams and temper tantrums for at least 30 minutes every session.
So, this week when were at this session, we saw a little girl using a walker. Well Lucas usually responds very well to other kids so I said, "Look at that pretty girl walking. If you stop crying and keep working, maybe one day you'll be able to walk too." Well the mom heard me and said that her daughter is five years old and is JUST starting to walk, so she understands all about this. Well this got me thinking...I know Lucas will walk someday, but I honestly never imagined in a million years that it would be five years before that day comes. I figured it would be two, maybe three--at the most--but five? Can't bee...can it? And then I really looked at the girl and she just looked so different from Lucas. She was short, and very skinny--you could say knobby knees would be a compliment. Well if you've ever seen Lucas, he's not short, and he's definitely not skinny. He's not fat or even chubby, but he doesn't "look" like a feeding tube baby. In fact, I get so many compliments from doctors for the way he "looks"--Healthy if you dare use that word. So that got me thinking, when Lucas starts walking and getting very active, will he drastically lose weight if he's still not eating? So I asked the therapist, and do you know her answer was..."Well I don't think Lucas will ever be REALLY active. But yeah, he'll probably lose a bit of weight."
So now, how do we go from "He's doing so well", and "He'll probably walk before he crawls" to he won't be very active? Again, I never thought he would be able to play a whole soccer game without taking a break, but to never even be able to play soccer at all? To not have enough energy to run or do the things that kids love to do? It just breaks my heart. And so I'm putting this out there--Lucas will run. He will play soccer and maybe even baseball with his brother. On a real team. And he will be great--just like his brother. And he will win a trophy or a tournament. He will try out for some team in school--and make it. He may not start, but he'll play. He may not be the best, he may have to work harder than every other person on that team put together, but he will play. They say if you put things out in the universe like that, that they are more likely to happen. So there it is universe.
And one more depressing thing to write. Lucas will not be going to school this year. :( I was trying to get him in to the local baptist mother's day out program one day a week. But, since he's not walking or eating, they won't take him. Well she said as far as the feeding went, I would have to go every day and feed him. And we could talk about the mobility issues to see if we could work around that. But who wants to do all of that. I just bowed out gracefully. Besides, if I have to go feed him in the middle of the day, he's just gonna cry when I have to leave again, and what good is that doing for him anyways? Maybe next year...
Well I can not leave you with a completely sad entry so I will write one more thing. I have an idea. I want to write a book for Lucas, but I need your help. Even though Lucas has the capacity to talk now, I am still planning on teaching him to sign. And what I want from you is to learn one sign. One word or phrase that he can say. (i.e. more, all done, eat, speak, go to sleep, tired, mother, father, etc.) So, once you've learned your word, take a picture of you signing that word and email it to me at lindsey_preferco@yahoo.com with "Lucas' Book" as the subject. I'm hoping to get all of his family and friends to do this so he can see familiar faces which would make him want to learn how to do it. Once I've gotten enough, I plan on putting it all together in a book format so we can read it daily and practice with you all. Just be sure that the sign you choose is pretty simple--as it will be shown through a still shot. I better get a lot of emails!
This week we saw our new neurologist. Poor guy still thinks we want to see our other doc still. I'd love to be a fly on the wall when he calls her with the results of the test and she tells him she wants nothing to do with us. But anyway, that's enough of that. There's nothing I can do about that situation now so I'm just leaving it be. Everything happens for a reason right? At least that's what I've always believed and what I've been holding on to ever since my man was born.
So the appointment was basically just an assessment. I really thought Lucas was going to seize in front of him because I kept him up during his usual nap time and he finally fell asleep while we were waiting on the doctor and I had to wake him up--I couldn't have set that up better if I tried any harder--but to no avail. He did not seize, in fact, he awoke laughing and smiling at the doctor! Well that's a first.
So, of course it's always something...as I'm talking to the doctor I start to smell something funny. Let me tell you parents, no matter where you are, when you smell something funny, always check the diaper right away, otherwise, you just might get pooped on...twice! Yes I said twice. And yes, this was during the assessment. So as I'm trying to change his diaper, take his clothes off, clean my shorts, clean their table and floor, I know I'm forgetting questions I have and probably leaving out some information because all I could think was, I smell like poop...I can't wait to go home and change.
Well, the doc ended up getting some bloodwork done to check his medicine levels since the ER doctor upped the meds (to make sure the dosage is working). Until he gets the results from that and from the sleep study that we're finally doing this Tuesday, he's not changing the meds. This kinda made me sad. Not that I have anything against this medicine, because it has kept him seizure free while he's awake, but it's not controlling these breakthrough (sleeping) seizures at all and I know he will continue to have them until we get the right medicine. And that means, more potential damage to his brain and possibly physical function. Plus, the phenobarb is making him very aggressive and even a little mean at times. If he's not in a good mood, or if he's sleepy, he will literally swat at you and try and kick you. Plus he cries a whole lot more. Not that I should complain, because he's pretty much been a complete angel up until now, but I just worry that he knows he's feeling off right now.
One little bit of GREAT news is that we finally got the approval for his sit to stander! I called the lady and it should be here within two weeks!!! I can not wait. We've waited so long for this, and hopefully this will put him on the road to building those leg muscles up even more so we can work on walking!! He's been doing so great in the exersaucer so I think he will adjust to this pretty well.
Lucas has been doing a little better in therapy lately. The OT that comes to the house has been around the last three weeks in a row so he's finally getting used to her and had an awesome session this week. Unfortunately, it's not going quite as great with the OT we travel to Metairie to see every Thursday. We've only been able to go every other week for the past two or three sessions so he's acting all shy with her too now. It's so frustrating, because this used to be the one he would do awesome at every time, and lately we've been fighting tears, screams and temper tantrums for at least 30 minutes every session.
So, this week when were at this session, we saw a little girl using a walker. Well Lucas usually responds very well to other kids so I said, "Look at that pretty girl walking. If you stop crying and keep working, maybe one day you'll be able to walk too." Well the mom heard me and said that her daughter is five years old and is JUST starting to walk, so she understands all about this. Well this got me thinking...I know Lucas will walk someday, but I honestly never imagined in a million years that it would be five years before that day comes. I figured it would be two, maybe three--at the most--but five? Can't bee...can it? And then I really looked at the girl and she just looked so different from Lucas. She was short, and very skinny--you could say knobby knees would be a compliment. Well if you've ever seen Lucas, he's not short, and he's definitely not skinny. He's not fat or even chubby, but he doesn't "look" like a feeding tube baby. In fact, I get so many compliments from doctors for the way he "looks"--Healthy if you dare use that word. So that got me thinking, when Lucas starts walking and getting very active, will he drastically lose weight if he's still not eating? So I asked the therapist, and do you know her answer was..."Well I don't think Lucas will ever be REALLY active. But yeah, he'll probably lose a bit of weight."
So now, how do we go from "He's doing so well", and "He'll probably walk before he crawls" to he won't be very active? Again, I never thought he would be able to play a whole soccer game without taking a break, but to never even be able to play soccer at all? To not have enough energy to run or do the things that kids love to do? It just breaks my heart. And so I'm putting this out there--Lucas will run. He will play soccer and maybe even baseball with his brother. On a real team. And he will be great--just like his brother. And he will win a trophy or a tournament. He will try out for some team in school--and make it. He may not start, but he'll play. He may not be the best, he may have to work harder than every other person on that team put together, but he will play. They say if you put things out in the universe like that, that they are more likely to happen. So there it is universe.
And one more depressing thing to write. Lucas will not be going to school this year. :( I was trying to get him in to the local baptist mother's day out program one day a week. But, since he's not walking or eating, they won't take him. Well she said as far as the feeding went, I would have to go every day and feed him. And we could talk about the mobility issues to see if we could work around that. But who wants to do all of that. I just bowed out gracefully. Besides, if I have to go feed him in the middle of the day, he's just gonna cry when I have to leave again, and what good is that doing for him anyways? Maybe next year...
Well I can not leave you with a completely sad entry so I will write one more thing. I have an idea. I want to write a book for Lucas, but I need your help. Even though Lucas has the capacity to talk now, I am still planning on teaching him to sign. And what I want from you is to learn one sign. One word or phrase that he can say. (i.e. more, all done, eat, speak, go to sleep, tired, mother, father, etc.) So, once you've learned your word, take a picture of you signing that word and email it to me at lindsey_preferco@yahoo.com with "Lucas' Book" as the subject. I'm hoping to get all of his family and friends to do this so he can see familiar faces which would make him want to learn how to do it. Once I've gotten enough, I plan on putting it all together in a book format so we can read it daily and practice with you all. Just be sure that the sign you choose is pretty simple--as it will be shown through a still shot. I better get a lot of emails!
August 17, 2010
Warning: Long Entry
Ok, so I know it's been a while since my last entry, and I'm very sorry. When I got home from my girls weekend (which was a blast!) I caught a darn stomach bug and slept for like two days. I guess this past year caught up with me finally. That same day, we also lost a great friend, Robert Credidio. We love you, and you will be missed Robert!
So last week I decided to move both the boys beds in Joshua's room so they can sleep together. After all, Joshua has been going in Lucas' room and sleeping on the floor to be closer to his brother, so I thought this way, everyone's more comfortable. And they love being together! The only problem is that we changed Joshua's crib into a daybed, so he can freely get out whenever he wants (not that the rails were stopping him before). I should've known that would be a problem because as soon as Josh gave him the "go ahead" to get in the bed once the rail was down, he immediately started jumping and said, "Oh, this is fun!". So now it's a fight of wills to see who will last longer during the nap time ritual of him getting out of bed, and me putting him back in.
Lucas' old room is now being turned into their playroom/guest room. And would you believe that when putting our extra medical supplies we don't use everyday up in the closet, I found more trach supplies that I forgot to give to Tripp. And yesterday Josh pulled a bag of suction catheters out of the glove compartment of his truck! (And he barely did any of the suctioning, let alone in his truck!) I'll probably be finding supplies for years!
So, the little Lukie man is doing pretty good. The extra medicine must be finally kicking in because we are no longer having (up to) 6 seizures a day. He may have 1 or 2, but to me, that's better than before. The extra medicine has its' good points and bad points. Obviously it's controlling the seizures, which is good, but it also has some not so good side effects. The little guy has been very cranky lately. If he's not happy, he's gonna let you know! He has had more temper tantrums in the last couple of weeks than he's had this last year! And worst of all, he hasn't been using the left arm near as much as the right arm AGAIN! After the port was removed, some of the swelling in that arm went down and he started using it more. But now, he's reverting back to the old ways again. And the swelling in that (left) arm has also increased again.. ugh! And lastly, he's been a bit groggy. I'm trying to give him his medicine earlier at night so it'll wear off a bit earlier during the day, but we're so used to our routine of giving him the meds at bed time, that I haven't been near as consistent as I should be.
One thing I am so happy to report is that Lucas is doing so much better with eating. (I never thought I'd be saying that so quickly!) Don't get me wrong, he's not eating spoonfuls of food at every meal, but he isn't turning up his head to the spoon anymore, and he will ALWAYS take food off of his pacifier--even when he sees me put the food on it. He's also learned the sign for "eat" and actually told me "eat more" (in sign language) the other day. Talk about huge steps!! He even ate 5 puffs yesterday! (Well they melt in your mouth, but he left them on his tongue until they dissolved!)
I have to say that the eating is the hardest thing to be consistent with. Part of it is Lucas not wanting much of anything to do with eating, and part of it is pure frustration and lack of consistency on my end. He's so hungry at breakfast that he doesn't really want the spoon, but he'll take anything of the pacifier. At lunch, about half way through the meal, he's falling asleep so I can't feed him anything by mouth at this point because of the risk of choking and aspirating. But dinner is his best. I've been trying to get him to watch Joshua eating to get him excited to do what his brother does. Hopefully that will work a little better--he just loves his big brother so much and loves everything he does.
So physical therapy is finally getting better. My man looked like his old self last week at therapy. For the first time he didn't complain just to sit up, which he's been doing lately. I was getting worried something was wrong, but that just goes to show you how moody he's been. Hopefully he'll do just as good this week. We've been working on different things so maybe he'll show off some of our tricks tomorrow when the therapists come to see him in the morning!
BTW, I think I told you all that we are getting this sit to stand seating and walking system. Well we sent all of our paperwork in to the company to order it the first week in June. They were supposed to send the approval for insurance (which usually takes 30 days) and then they would order the equipment (it takes anywhere from 2-6 weeks for the big items to come in). Well, we found out last Wednesday that the company forgot to send in for the authorization to the insurance company! This week we should get the approval (when we should be getting the stander!) and hopefully we can get the company to rush the chair. My guy needs to start putting more weight on those legs and get stronger so he can walk by his 2nd birthday! Even if he's using a walker, my little guy will be walking! I originally said I'd be happy if he walked by 3 (which would be fine) but I think he's strong enough to do more now...I think he's gonna surprise me!
And how could I forget to tell you?? Thank you for all your prayers...the new doctor FINALLY called me back with an appointment. (After almost 3 weeks of trying to get an appointment--good thing this wasn't serious or anything!) Anyways, we're going next Tuesday and hopefully he'll set up the sleep study at that time as well. I'm also thinking about asking him to change his seizure meds or do a combo of two meds at lower doses to fight off some of the side effects of the drug he's on now. I'm hoping this will get that weaker side (left) more active again. I just hope the weakness is from the meds and not damage from all the seizures he was having. Well, hopefully this new doc will have some answers for us. But until then, we're just taking it day by day.
Man, I should've been a doctor! :)
Love y'all!
So last week I decided to move both the boys beds in Joshua's room so they can sleep together. After all, Joshua has been going in Lucas' room and sleeping on the floor to be closer to his brother, so I thought this way, everyone's more comfortable. And they love being together! The only problem is that we changed Joshua's crib into a daybed, so he can freely get out whenever he wants (not that the rails were stopping him before). I should've known that would be a problem because as soon as Josh gave him the "go ahead" to get in the bed once the rail was down, he immediately started jumping and said, "Oh, this is fun!". So now it's a fight of wills to see who will last longer during the nap time ritual of him getting out of bed, and me putting him back in.
Lucas' old room is now being turned into their playroom/guest room. And would you believe that when putting our extra medical supplies we don't use everyday up in the closet, I found more trach supplies that I forgot to give to Tripp. And yesterday Josh pulled a bag of suction catheters out of the glove compartment of his truck! (And he barely did any of the suctioning, let alone in his truck!) I'll probably be finding supplies for years!
So, the little Lukie man is doing pretty good. The extra medicine must be finally kicking in because we are no longer having (up to) 6 seizures a day. He may have 1 or 2, but to me, that's better than before. The extra medicine has its' good points and bad points. Obviously it's controlling the seizures, which is good, but it also has some not so good side effects. The little guy has been very cranky lately. If he's not happy, he's gonna let you know! He has had more temper tantrums in the last couple of weeks than he's had this last year! And worst of all, he hasn't been using the left arm near as much as the right arm AGAIN! After the port was removed, some of the swelling in that arm went down and he started using it more. But now, he's reverting back to the old ways again. And the swelling in that (left) arm has also increased again.. ugh! And lastly, he's been a bit groggy. I'm trying to give him his medicine earlier at night so it'll wear off a bit earlier during the day, but we're so used to our routine of giving him the meds at bed time, that I haven't been near as consistent as I should be.
One thing I am so happy to report is that Lucas is doing so much better with eating. (I never thought I'd be saying that so quickly!) Don't get me wrong, he's not eating spoonfuls of food at every meal, but he isn't turning up his head to the spoon anymore, and he will ALWAYS take food off of his pacifier--even when he sees me put the food on it. He's also learned the sign for "eat" and actually told me "eat more" (in sign language) the other day. Talk about huge steps!! He even ate 5 puffs yesterday! (Well they melt in your mouth, but he left them on his tongue until they dissolved!)
I have to say that the eating is the hardest thing to be consistent with. Part of it is Lucas not wanting much of anything to do with eating, and part of it is pure frustration and lack of consistency on my end. He's so hungry at breakfast that he doesn't really want the spoon, but he'll take anything of the pacifier. At lunch, about half way through the meal, he's falling asleep so I can't feed him anything by mouth at this point because of the risk of choking and aspirating. But dinner is his best. I've been trying to get him to watch Joshua eating to get him excited to do what his brother does. Hopefully that will work a little better--he just loves his big brother so much and loves everything he does.
So physical therapy is finally getting better. My man looked like his old self last week at therapy. For the first time he didn't complain just to sit up, which he's been doing lately. I was getting worried something was wrong, but that just goes to show you how moody he's been. Hopefully he'll do just as good this week. We've been working on different things so maybe he'll show off some of our tricks tomorrow when the therapists come to see him in the morning!
BTW, I think I told you all that we are getting this sit to stand seating and walking system. Well we sent all of our paperwork in to the company to order it the first week in June. They were supposed to send the approval for insurance (which usually takes 30 days) and then they would order the equipment (it takes anywhere from 2-6 weeks for the big items to come in). Well, we found out last Wednesday that the company forgot to send in for the authorization to the insurance company! This week we should get the approval (when we should be getting the stander!) and hopefully we can get the company to rush the chair. My guy needs to start putting more weight on those legs and get stronger so he can walk by his 2nd birthday! Even if he's using a walker, my little guy will be walking! I originally said I'd be happy if he walked by 3 (which would be fine) but I think he's strong enough to do more now...I think he's gonna surprise me!
And how could I forget to tell you?? Thank you for all your prayers...the new doctor FINALLY called me back with an appointment. (After almost 3 weeks of trying to get an appointment--good thing this wasn't serious or anything!) Anyways, we're going next Tuesday and hopefully he'll set up the sleep study at that time as well. I'm also thinking about asking him to change his seizure meds or do a combo of two meds at lower doses to fight off some of the side effects of the drug he's on now. I'm hoping this will get that weaker side (left) more active again. I just hope the weakness is from the meds and not damage from all the seizures he was having. Well, hopefully this new doc will have some answers for us. But until then, we're just taking it day by day.
Man, I should've been a doctor! :)
Love y'all!
August 6, 2010
Mothers Know Best
So yesterday, sometime after one of Lucas' seizures I went to change his diaper and found his lips turning purple. I laid him out on the table under the light, and sure enough, the lips were purple and his hands were blue from his fingers to his knuckles. After about a minute or two of me talking to him and sitting him upright, he finally took a deep breath and perked back up. But he was groggy for about an hour or so after this. So finally, with a little convincing from my mom, I decided it was time to take him to the ER.
After about ten minutes of talking to the ER doctor, he all but diagnosed Lucas with rolondic seizures. Can you believe that? Ten minutes of just talking to me, the ER doctor (thinks he) knows exactly what Lucas has. If I would've known it was that easy to get an answer, I would've taken him to the ER ages ago. And finally Lucas has a seizure in front of a doctor--Praise the Lord! So I'm not crazy, and it's definitely seizures. (I could call Dr. Africk and give her a few choice words right about now!)
So I quickly looked up roldondic (or rolandic; I've found it spelled both ways) and it describes almost to a T exactly what he's been doing. Partial seizures, mostly facial tremors, in boys, lots of drooling!! I feel so much better now.
Well I will write more later, but I'm heading out for a ladies night tonight. See y'all later!
BTW, I was so right by upping his meds!
After about ten minutes of talking to the ER doctor, he all but diagnosed Lucas with rolondic seizures. Can you believe that? Ten minutes of just talking to me, the ER doctor (thinks he) knows exactly what Lucas has. If I would've known it was that easy to get an answer, I would've taken him to the ER ages ago. And finally Lucas has a seizure in front of a doctor--Praise the Lord! So I'm not crazy, and it's definitely seizures. (I could call Dr. Africk and give her a few choice words right about now!)
So I quickly looked up roldondic (or rolandic; I've found it spelled both ways) and it describes almost to a T exactly what he's been doing. Partial seizures, mostly facial tremors, in boys, lots of drooling!! I feel so much better now.
Well I will write more later, but I'm heading out for a ladies night tonight. See y'all later!
BTW, I was so right by upping his meds!
August 3, 2010
One Step Forward, Two Steps Back
Doctors....Can't live with 'em, can't live without 'em.
So the CET is happening every time he falls asleep now. Sometimes 2-3 times during the night. So all in all, he has about 4-5 seizures a day right now. And still I can't get an appointment with a neurologist.
Technically the CET has not been diagnosed as seizures. In fact, our old neurologist said they were not seizures. However, I have overruled her and diagnosed him myself. In fact, I'm even upping his medicine since the doctor can't be bothered to take my calls or call another doctor on my behalf. (Don't worry, I'm not going crazy with upping his meds. I just know he needs more of it, so I have started increasing it by 1 cc this week until I know how far to go up to. This medicine you have to increase the dosage very slowly or it could cause a seizure to occur. But why are they even worried about that since seizures are already occurring?)
Well our favorite Doc sent me an email Sunday morning to get in touch with her Monday morning because she would be at Tulane and would help me get in to the doc sooner. So I did. And she sends me a message saying that the neurologist left Tulane and the new doc has not signed a contract yet so they won't let him see patients! I just waned to crawl in a hole and hide. How much more could we take?
So I think I told you all I called the (old) neurologists (Dr. Africk) office on Thursday and had them fax all the info over to the new doc they recommended me to--Dr. Jeffrey Nicholl. Well I gave the receptionist my number for the nurse to call me back, but of course they never called me. Who's surprised? So, Monday morning I called again and told the receptionist no one called me and finally the (bitch) nurse called me back and said that they don't give return calls when they fax information over. (And why should they, it's not like this is a serious problem right?) Well, nice me and all--I was way too pleasant for what the dang woman deserved--told her that the doctor had left and the new doctor wasn't allowed to see patients yet. But I did NOT tell her that Dr. Rodriguez told us that because I would've got even more attitude. Well she tells me that she knows for a fact that the doctor did not leave Tulane. So, I said, ok well I'll call back, they must have been mistaken. Then I tell her Dr. Africk told me to call back in the meantime if I couldn't get in right away with Dr. Nicholl and she would up his medicine until the new doctor could take over. (Why she didn't do it in the first place is beyond me!) Well the bitch was all too happy to tell me that Dr. Africk was on vacation for three weeks.. SO...
Yes that's what she said.. so.... I wanted to holler so, what? Get her partner to call me back, something. Give me a freaking option, don't just give me a smug so... If I would've been there in person talking to her, I probably would've slapped her. Thank God Josh wasn't there or even on the phone because he probably would've been arrested!
She did offer to prove me wrong that Dr. Nicholl was still there. She said she would call him to make sure, but who needs her help? I told her don't worry about it and I'd call back. Then she finally tells me that he's in the adult side of the clinic, not the peds. And that was the problem. I told Rodriguez and she was able to get a hold of him and said that as soon as they got his info they would call me.
Well, he was supposed to start seeing patients today, but so far no call from Dr. Nicholl's office. I left a voicemail after lunch, but still nothing. And he's already had (3) seizures today! I've put the camera up by his bed and am going to try and get more of them on video and make a disc for the new doctor. Maybe he'll actually care enough to watch it. (I just had to go video one right now) :(
So Josh and I have finally decided that if the doctors can't be bothered to see him, we are going to take him to the ER. We don't know what else to do. I know it's not what we're supposed to do and they probably won't do anything but do bloodwork and maybe up his meds, but how can they expect us to just sit back and watch my little man have seizures 4-5 times a day, every day now! I'm trying to do the right thing and do as the doctors tell me, but I don't know how much longer I can handle them not doing anything!
And on another note, I think it's time we see the GI doctor. I think I will ask Dr. DeFrank for the referral at our next appointment. The little guy waits days to poop now, and when he finally does, it huge, hard balls. One time the size of my fist. I have to give him enemas on a weekly basis.. and when I gave him one three days ago, nothing happened. I had to give him another one today and he finally went. He's so uncomfortable, poor little guy. I can't wait for him to have a month when he's feeling great and breathing well on his own with no seizure activity.
So the CET is happening every time he falls asleep now. Sometimes 2-3 times during the night. So all in all, he has about 4-5 seizures a day right now. And still I can't get an appointment with a neurologist.
Technically the CET has not been diagnosed as seizures. In fact, our old neurologist said they were not seizures. However, I have overruled her and diagnosed him myself. In fact, I'm even upping his medicine since the doctor can't be bothered to take my calls or call another doctor on my behalf. (Don't worry, I'm not going crazy with upping his meds. I just know he needs more of it, so I have started increasing it by 1 cc this week until I know how far to go up to. This medicine you have to increase the dosage very slowly or it could cause a seizure to occur. But why are they even worried about that since seizures are already occurring?)
Well our favorite Doc sent me an email Sunday morning to get in touch with her Monday morning because she would be at Tulane and would help me get in to the doc sooner. So I did. And she sends me a message saying that the neurologist left Tulane and the new doc has not signed a contract yet so they won't let him see patients! I just waned to crawl in a hole and hide. How much more could we take?
So I think I told you all I called the (old) neurologists (Dr. Africk) office on Thursday and had them fax all the info over to the new doc they recommended me to--Dr. Jeffrey Nicholl. Well I gave the receptionist my number for the nurse to call me back, but of course they never called me. Who's surprised? So, Monday morning I called again and told the receptionist no one called me and finally the (bitch) nurse called me back and said that they don't give return calls when they fax information over. (And why should they, it's not like this is a serious problem right?) Well, nice me and all--I was way too pleasant for what the dang woman deserved--told her that the doctor had left and the new doctor wasn't allowed to see patients yet. But I did NOT tell her that Dr. Rodriguez told us that because I would've got even more attitude. Well she tells me that she knows for a fact that the doctor did not leave Tulane. So, I said, ok well I'll call back, they must have been mistaken. Then I tell her Dr. Africk told me to call back in the meantime if I couldn't get in right away with Dr. Nicholl and she would up his medicine until the new doctor could take over. (Why she didn't do it in the first place is beyond me!) Well the bitch was all too happy to tell me that Dr. Africk was on vacation for three weeks.. SO...
Yes that's what she said.. so.... I wanted to holler so, what? Get her partner to call me back, something. Give me a freaking option, don't just give me a smug so... If I would've been there in person talking to her, I probably would've slapped her. Thank God Josh wasn't there or even on the phone because he probably would've been arrested!
She did offer to prove me wrong that Dr. Nicholl was still there. She said she would call him to make sure, but who needs her help? I told her don't worry about it and I'd call back. Then she finally tells me that he's in the adult side of the clinic, not the peds. And that was the problem. I told Rodriguez and she was able to get a hold of him and said that as soon as they got his info they would call me.
Well, he was supposed to start seeing patients today, but so far no call from Dr. Nicholl's office. I left a voicemail after lunch, but still nothing. And he's already had (3) seizures today! I've put the camera up by his bed and am going to try and get more of them on video and make a disc for the new doctor. Maybe he'll actually care enough to watch it. (I just had to go video one right now) :(
So Josh and I have finally decided that if the doctors can't be bothered to see him, we are going to take him to the ER. We don't know what else to do. I know it's not what we're supposed to do and they probably won't do anything but do bloodwork and maybe up his meds, but how can they expect us to just sit back and watch my little man have seizures 4-5 times a day, every day now! I'm trying to do the right thing and do as the doctors tell me, but I don't know how much longer I can handle them not doing anything!
And on another note, I think it's time we see the GI doctor. I think I will ask Dr. DeFrank for the referral at our next appointment. The little guy waits days to poop now, and when he finally does, it huge, hard balls. One time the size of my fist. I have to give him enemas on a weekly basis.. and when I gave him one three days ago, nothing happened. I had to give him another one today and he finally went. He's so uncomfortable, poor little guy. I can't wait for him to have a month when he's feeling great and breathing well on his own with no seizure activity.
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