YAY!
On Monday we took Peanut to the neurosurgeon for what was our last visit with him. Nice Guy. Busy waiting room. LONG waits!! lol.
He informed us that since Peanut is now walking that we're pretty much out of the woods of his (external) hydrocephalus ever needing surgical intervention. His head is still WAY up there on the charts. It's somewhere around or just above the 95th percentile & if you correct for age (he was nearly 2 mo early) it's well above the 100th percentile, but that's pretty much where it's been since he was tiny.
He turned 15 mo on Sat & at his appointment he weighed in at 24lbs & 30" & some change. Not bad at all. Actually, the boy likes to eat.
My 'issue' is how flat his head still is on one side. No, it's not the end of the world but look at this poor boy's genetics...he IS going to be bald again & I hate to say it but that will be sooner rather than later. He was never a candidate for a helmet because of the extra fluid surrounding his brain. Putting him in a helmet could have caused more damage than good, so his head will round out just a little more before that last soft spot closes but he's pretty much stuck with what he's got. Man that sucks for him.
Showing posts with label medical. Show all posts
Showing posts with label medical. Show all posts
Wednesday, July 29, 2009
Thursday, July 23, 2009
A bit Bummed
Let's see if I'm capable of keeping this one short.
Not Likely.
We have 2 children (obviously) & both were born a bit on the early side. In case you don't know a pregnancy is supposed to be 40 weeks but it's considered full term at 37. Little Man made it to 35 weeks (no NICU time) & the Peanut made it to 32 weeks (a month in NICU). I have a cerclage this time around & I was really hoping that would make a huge difference in keeping this little one baking even longer than the first 2.
So far things have gone pretty well, no issues with the baby & he's growing just fine. While my blood pressure has a tendency to soar the moment of conception it's not taken a ton of meds to keep it in check...until now. I'm 24 weeks & for the first time this pregnancy I finally got an indication that she doesn't expect me to actually make it to term...again.
Little Man was born in MI so I had a different doctor with him. I'm using the same doctor this time as I did for Peanut (love her) and all during that pregnancy she was very honest about me not making it to term. Of course, that's because the issue of the cervix was discovered then.
So yesterday as I was having the discussion of how & when the cerclage comes out, signs of labor that could be different this time around because of being stitched etc, she said those dreaded words..."I'll be ecstatic if you make it to 36 weeks." UGH. This is SO disappointing to me.
Even though most women do nothing but gripe about that last month of pregnancy I'd love the opportunity to experience it. I'm still hopeful that I can prove her wrong but I guess time will tell.
Anyhow, that's why I'm a bit bummed now.
Not Likely.
We have 2 children (obviously) & both were born a bit on the early side. In case you don't know a pregnancy is supposed to be 40 weeks but it's considered full term at 37. Little Man made it to 35 weeks (no NICU time) & the Peanut made it to 32 weeks (a month in NICU). I have a cerclage this time around & I was really hoping that would make a huge difference in keeping this little one baking even longer than the first 2.
So far things have gone pretty well, no issues with the baby & he's growing just fine. While my blood pressure has a tendency to soar the moment of conception it's not taken a ton of meds to keep it in check...until now. I'm 24 weeks & for the first time this pregnancy I finally got an indication that she doesn't expect me to actually make it to term...again.
Little Man was born in MI so I had a different doctor with him. I'm using the same doctor this time as I did for Peanut (love her) and all during that pregnancy she was very honest about me not making it to term. Of course, that's because the issue of the cervix was discovered then.
So yesterday as I was having the discussion of how & when the cerclage comes out, signs of labor that could be different this time around because of being stitched etc, she said those dreaded words..."I'll be ecstatic if you make it to 36 weeks." UGH. This is SO disappointing to me.
Even though most women do nothing but gripe about that last month of pregnancy I'd love the opportunity to experience it. I'm still hopeful that I can prove her wrong but I guess time will tell.
Anyhow, that's why I'm a bit bummed now.
Wednesday, July 8, 2009
Just do your job!
With both of our children having issues that have required extensive medical care this was bound to happen eventually.
Back in December, Peanut had a short stay at Texas Children's Hospital to determine why he had extra fluid surrounding his brain. At the point they decided to admit him, it wasn't that they thought it was an emergency to know what was going on since they had determined his ventricles were okay. Instead the issue was that if they sent us home to follow up, it would be 4-6 months before he would be seen & have an MRI to determine what was going on. It might not have been an immediate need but waiting months to find out wasn't acceptable to any of us. It was at least more urgent than that.
So the point is that someone at the hospital dropped the ball & didn't manage to follow through with getting the pre-cert required for his hospital stay. Oh bloody wonderful! I have been chasing this crap through hoops for months. The hospital says we owe them over $2000 because part of the claim was denied.
Well hellooooooo bone heads! It was denied because someone at your facility didn't bother to make sure the authorization was obtained!!! The insurance company doesn't even show a record of TCH making an attempt for an auth, even though TCH says they started it.
Well TCH, if you did then you could provide me that info so that I can help you get paid! Grrr....
My Plan: I've had enough. I know that we owe them $500 for our co-pay and not a dime over (because the OOP max was met in what, the first few hours of his life? LOL). The insurance co paid for all the medical related services but denied room & board based on lack of authorization. I am willing to file one appeal with the ins co. If it's denied again TCH will be getting a letter along with my payment of $500 explaining that they will NEVER see another dime related to that claim and they can take up the lack of authorization with the employee that failed to do their job or the insurance company but it's not my problem.
If people would just do their jobs, things like this wouldn't happen.
Back in December, Peanut had a short stay at Texas Children's Hospital to determine why he had extra fluid surrounding his brain. At the point they decided to admit him, it wasn't that they thought it was an emergency to know what was going on since they had determined his ventricles were okay. Instead the issue was that if they sent us home to follow up, it would be 4-6 months before he would be seen & have an MRI to determine what was going on. It might not have been an immediate need but waiting months to find out wasn't acceptable to any of us. It was at least more urgent than that.
So the point is that someone at the hospital dropped the ball & didn't manage to follow through with getting the pre-cert required for his hospital stay. Oh bloody wonderful! I have been chasing this crap through hoops for months. The hospital says we owe them over $2000 because part of the claim was denied.
Well hellooooooo bone heads! It was denied because someone at your facility didn't bother to make sure the authorization was obtained!!! The insurance company doesn't even show a record of TCH making an attempt for an auth, even though TCH says they started it.
Well TCH, if you did then you could provide me that info so that I can help you get paid! Grrr....
My Plan: I've had enough. I know that we owe them $500 for our co-pay and not a dime over (because the OOP max was met in what, the first few hours of his life? LOL). The insurance co paid for all the medical related services but denied room & board based on lack of authorization. I am willing to file one appeal with the ins co. If it's denied again TCH will be getting a letter along with my payment of $500 explaining that they will NEVER see another dime related to that claim and they can take up the lack of authorization with the employee that failed to do their job or the insurance company but it's not my problem.
If people would just do their jobs, things like this wouldn't happen.
Thursday, February 12, 2009
Insurance Saga
So the drama continues. We talked to the insurance company to find out if Apraxia is covered. The answer is yes. However, apraxia is a little more complicated than just being 'apraxia'.
They are going to change billing codes and see if that works. If not we'll have to start the appeals process. So frustrating. In the mean time he's continuing the speech. I can only hope that by the time this is sorted out I'm not going to be scrambling to figure out how to pay for all of this so far out of pocket. OMG that thought is going to make me cry! LOL.
It made me feel good that his ST was beside herself and went on a rant in the office about the denial letter. Oh it was ridiculous. I believe it said, "While speech therapy may be beneficial, your benefit plan specifically excludes speech therapy that is not restorative in nature."
She said that if they are going to nit-pick in that manner we will fight that his birth trauma was a head injury therefore we are restoring what he would have had without the injury.
BTW: Why don't insurance companies understand that by dealing with developmental problems they are going to save more money in the long run?
They are going to change billing codes and see if that works. If not we'll have to start the appeals process. So frustrating. In the mean time he's continuing the speech. I can only hope that by the time this is sorted out I'm not going to be scrambling to figure out how to pay for all of this so far out of pocket. OMG that thought is going to make me cry! LOL.
It made me feel good that his ST was beside herself and went on a rant in the office about the denial letter. Oh it was ridiculous. I believe it said, "While speech therapy may be beneficial, your benefit plan specifically excludes speech therapy that is not restorative in nature."
She said that if they are going to nit-pick in that manner we will fight that his birth trauma was a head injury therefore we are restoring what he would have had without the injury.
That's his head several hours after he was born. Nobody could believe just how big, bad & ugly that bruise & cut were. It took for what seemed like forever for that thing to go away. We both truly believe - to this day - this is the root of Little Man's problems. Say what you will, but if that bruise had appeared on my son's head AFTER he was born, he'd of been taken from my care immediately so I don't really see how the consequences of the injury would be any different.
BTW: Why don't insurance companies understand that by dealing with developmental problems they are going to save more money in the long run?
Monday, January 26, 2009
Peanut & the Neurosurgeon
Peanut had his follow up with the neurosurgeon today and it went REALLY well. We won't see him again for 6 months unless something comes up which we don't forsee. Let me see if I can explain this since I finally got to clarify that I understood it today.
For some reason which we will likely never know, Peanut's head grew very large, very quickly. This has left him with more space in his head than what most babies would have. In light of that big head his brain is producing more CSF to accomodate the bigger space. (CSF=Spinal fluid that surrounds the brain.) As Peanut grows into his head (which hasn't grown since Dec) the space will naturally narrow. It can take up until he's 3 years old for this process to complete but it will narrow. As the space narrows the brain should automatically regulate the amount of CSF for his new head size and in turn there would be no problems. This is the theory and there is no reason to believe that his brain would continue producing the same amount of fluid for a smaller space.
So we follow up again in 6 months and have again been given the warning signs of too much pressure on the brain. Neither of us think we'll have any problems. They will likely want to do another MRI of his head at some point to compare and make sure nothing has changed but that's further down the road.
BTW: The term he used for Peanut's condition was "External Hydrocephalus."
For some reason which we will likely never know, Peanut's head grew very large, very quickly. This has left him with more space in his head than what most babies would have. In light of that big head his brain is producing more CSF to accomodate the bigger space. (CSF=Spinal fluid that surrounds the brain.) As Peanut grows into his head (which hasn't grown since Dec) the space will naturally narrow. It can take up until he's 3 years old for this process to complete but it will narrow. As the space narrows the brain should automatically regulate the amount of CSF for his new head size and in turn there would be no problems. This is the theory and there is no reason to believe that his brain would continue producing the same amount of fluid for a smaller space.
So we follow up again in 6 months and have again been given the warning signs of too much pressure on the brain. Neither of us think we'll have any problems. They will likely want to do another MRI of his head at some point to compare and make sure nothing has changed but that's further down the road.
BTW: The term he used for Peanut's condition was "External Hydrocephalus."
Friday, December 12, 2008
Peanut's Diagnosis
I will no longer say, "when things calm down." I have come to accept that this busy life is the way it's going to be. Especially now that we are adding another specialist to our line up.
Peanut does have hydrocephalus, but not the traditional kind with enlarged ventricles that needs an immediate shunt. By definition, hydrocephalus is too much fluid around the brain and that's what Peanut has. However, in Peanut's case he also just has more space around his brain to accommodate fluid. There is a cavity at the top of the head (can't remember it's name) and the normal size for the cavity is 1 to 2 millimeters. Peanut's cavity is a centimeter and a half!!! His head is just abnormally large and we don't know why as of right now.
The hope is that as the space naturally narrows from things like the closing of the soft spot that his brain will automatically adjust the amount of fluid for the new size of space.
We have explained away many of Peanut's issues but if you put them together at a global level, they could have been signs of too much pressure from early on. This would include his vomiting that we have said is his 'digestive issues' and his irritability which we blamed on his tummy bothering him. There are others, I just can't think of them at the moment. It's interesting that all of his "issues" went away as though someone had flipped a switch. He became calm, sleeping through the night and started spitting up less all in a 24 hour period of time. Is it possible that his head just finally got big enough to accommodate the fluid?
I need to go back and look but I do believe his head started growing at a much faster pace around 4 months old and it hasn't stopped. His head circumference is well above the 100th percentile without even correcting for age.
We see the neurosurgeon again at the end of January and they will be following Peanut very closely until he either outgrows this or proves he needs a shunt. The doctor believes he is very likely to outgrow it and that makes us VERY happy, obviously.
As of right now there are no signs that he needs relief of pressure in the brain therefore no shunt necessary. We've been given the list and told what to do if we see them and obviously we're hoping it never comes to that.
I asked the doctor if this means Peanut is being set up for the potential of many MRIs and or CT Scans. The short answer is yes. The long answer is that he at least has this MRI to show him the anatomy of the brain and hopefully we'll be able to put off the MRIs longer. We don't like the MRI because he has to be put under general anesthesia to do it. Of course, then there is the CT Scan which is huge amounts of radiation.
On another note: I'm ticked off that I think I caught something from one of those runts in the waiting room! LOL!
Peanut does have hydrocephalus, but not the traditional kind with enlarged ventricles that needs an immediate shunt. By definition, hydrocephalus is too much fluid around the brain and that's what Peanut has. However, in Peanut's case he also just has more space around his brain to accommodate fluid. There is a cavity at the top of the head (can't remember it's name) and the normal size for the cavity is 1 to 2 millimeters. Peanut's cavity is a centimeter and a half!!! His head is just abnormally large and we don't know why as of right now.
The hope is that as the space naturally narrows from things like the closing of the soft spot that his brain will automatically adjust the amount of fluid for the new size of space.
We have explained away many of Peanut's issues but if you put them together at a global level, they could have been signs of too much pressure from early on. This would include his vomiting that we have said is his 'digestive issues' and his irritability which we blamed on his tummy bothering him. There are others, I just can't think of them at the moment. It's interesting that all of his "issues" went away as though someone had flipped a switch. He became calm, sleeping through the night and started spitting up less all in a 24 hour period of time. Is it possible that his head just finally got big enough to accommodate the fluid?
I need to go back and look but I do believe his head started growing at a much faster pace around 4 months old and it hasn't stopped. His head circumference is well above the 100th percentile without even correcting for age.
We see the neurosurgeon again at the end of January and they will be following Peanut very closely until he either outgrows this or proves he needs a shunt. The doctor believes he is very likely to outgrow it and that makes us VERY happy, obviously.
As of right now there are no signs that he needs relief of pressure in the brain therefore no shunt necessary. We've been given the list and told what to do if we see them and obviously we're hoping it never comes to that.
I asked the doctor if this means Peanut is being set up for the potential of many MRIs and or CT Scans. The short answer is yes. The long answer is that he at least has this MRI to show him the anatomy of the brain and hopefully we'll be able to put off the MRIs longer. We don't like the MRI because he has to be put under general anesthesia to do it. Of course, then there is the CT Scan which is huge amounts of radiation.
On another note: I'm ticked off that I think I caught something from one of those runts in the waiting room! LOL!
Wednesday, December 10, 2008
Peanut's Head
Yesterday morning we took Peanut to have his head worked on. His head is very misshapen and even though the pedi might not want to be concerned about it yet, we don't see the point in waiting to help him get it back to the correct shape.
During the exam the doctor pointed out a bulge in his soft spot. This pretty much set off the alarm bells in our heads because Peanut's head circumference is huge. That doctor was kind enough to measure and plot it and his head circumference is well above the 100th percentile. So to recap we have 'big head' & 'bulging soft spot'. Of course the first thing that came to our minds was hydrocephalus. We discussed this revelation all day, made an appointment with the pedi for the next day (today) and just kept discussing.
We came to the conclusion that if there was any possibility of our child having hydrocephalus it couldn't wait. Going to the pedi was going to give us the same conclusion: his head needs to be evaluated. Then we would call for the referral and get an appointment in probably a good 3-4 months or longer. By the time we'd actually have answers several months would have passed. That just wasn't acceptable when you're talking about my child's brain!
We also easily decided that if we were going to go the Emergency Room route, it had to be a pediatric hospital so that it was pediatric specialists that were seeing him.
So off we went, leaving Little Man at my parents house to play with Diva and we headed to Texas Children's Hospital in the Medical Center. UGH! is all I can say for this country's healthcare situation. Especially in pediatrics because there just aren't enough physicians to go around.
I'll spare you the complaints of the ER and skip to the important stuff: According to the CT Scan they did, it's not hydrocephalus. The neurosurgeon did say that he has more fluid up there in the head than he should have. Initially the plan was to keep us in observation until morning when the neurosurgeon could come meet us, examine him and discuss the situation. They were talking about chalking it up to prematurity, following him closely and letting us go home after seeing the neurosurgeon.
Then this morning came and the plan changed. We weren't able to see the head neurosurgeon because he ended up in surgery. But he did look at the pictures and reports from his scan and determined we needed to stay, have an MRI done and figure out what is going on.
We weren't able to have the MRI done today but have been told, "first thing tomorrow morning." We'll see if their definition is the same as ours, hahaha. The hope is that the MRI will tell us what kind of fluid is surrounding his brain, why it's there and what we should do about it.
Until then, we wait.
I'll keep you posted and you keep the prayers coming!
PS: this means Peanut is missing his first snowfall. Can you believe how much it's snowing here right now? Good grief! Go Home Jack Frost!!!! lol.
During the exam the doctor pointed out a bulge in his soft spot. This pretty much set off the alarm bells in our heads because Peanut's head circumference is huge. That doctor was kind enough to measure and plot it and his head circumference is well above the 100th percentile. So to recap we have 'big head' & 'bulging soft spot'. Of course the first thing that came to our minds was hydrocephalus. We discussed this revelation all day, made an appointment with the pedi for the next day (today) and just kept discussing.
We came to the conclusion that if there was any possibility of our child having hydrocephalus it couldn't wait. Going to the pedi was going to give us the same conclusion: his head needs to be evaluated. Then we would call for the referral and get an appointment in probably a good 3-4 months or longer. By the time we'd actually have answers several months would have passed. That just wasn't acceptable when you're talking about my child's brain!
We also easily decided that if we were going to go the Emergency Room route, it had to be a pediatric hospital so that it was pediatric specialists that were seeing him.
So off we went, leaving Little Man at my parents house to play with Diva and we headed to Texas Children's Hospital in the Medical Center. UGH! is all I can say for this country's healthcare situation. Especially in pediatrics because there just aren't enough physicians to go around.
I'll spare you the complaints of the ER and skip to the important stuff: According to the CT Scan they did, it's not hydrocephalus. The neurosurgeon did say that he has more fluid up there in the head than he should have. Initially the plan was to keep us in observation until morning when the neurosurgeon could come meet us, examine him and discuss the situation. They were talking about chalking it up to prematurity, following him closely and letting us go home after seeing the neurosurgeon.
Then this morning came and the plan changed. We weren't able to see the head neurosurgeon because he ended up in surgery. But he did look at the pictures and reports from his scan and determined we needed to stay, have an MRI done and figure out what is going on.
We weren't able to have the MRI done today but have been told, "first thing tomorrow morning." We'll see if their definition is the same as ours, hahaha. The hope is that the MRI will tell us what kind of fluid is surrounding his brain, why it's there and what we should do about it.
Until then, we wait.
I'll keep you posted and you keep the prayers coming!
PS: this means Peanut is missing his first snowfall. Can you believe how much it's snowing here right now? Good grief! Go Home Jack Frost!!!! lol.
Monday, September 22, 2008
Updates
I am FINALLY trying to get some things updated around here. I've been working like mad to get pictures off the camera and onto the computer & eventually uploaded to the online photo album. I don't think I've ever been this far behind, but I also don't think things have ever been quite this crazy!
Things should settle down into a routine now and we can get back to business around here. Little Man had his physical therapy evaluation today and that was interesting. There is definitely much to be worked on and while his trunk is strong, his arms, hands, legs, ankles, etc are not. He has his assessment with the school district on Thursday to determine what services he'll be eligible for through them. Again...that should be interesting.
One of the great things is that Little Man is VERY interested in signing and he's trying hard. He's learning what they mean quickly. He can now spell his name if you sign the letters to him. He can also pick those letters out of a line up. Not too bad. I've got him spelling his name on video and you can find that in our online photo album in the VIDEOS-2008 Album. We're so proud of him. If you don't have the link handy, email me so I can send it to you.
I realized after I posted about Peanut's 4 month check up that Peanut is the same size at 4 1/2 months old as Little Man was at SIX months old. Crazy to me, especially considering Peanut was almost 2 months early when Little Man was only a month early. CRAZY!
And last but not least, a few pictures from our trip to DC.
Little Man with his adorable cousin.
Little Man making a face at me while feeding the ducks.
The 3 of them. Our niece (who was so upset we had to stick that pacifier in her mouth to get her to sit still, lol), Peanut & Little Man.
Remember how I said Peanut slept on the tray? Here it is. He slept like this basically the whole flight home.
Things should settle down into a routine now and we can get back to business around here. Little Man had his physical therapy evaluation today and that was interesting. There is definitely much to be worked on and while his trunk is strong, his arms, hands, legs, ankles, etc are not. He has his assessment with the school district on Thursday to determine what services he'll be eligible for through them. Again...that should be interesting.
One of the great things is that Little Man is VERY interested in signing and he's trying hard. He's learning what they mean quickly. He can now spell his name if you sign the letters to him. He can also pick those letters out of a line up. Not too bad. I've got him spelling his name on video and you can find that in our online photo album in the VIDEOS-2008 Album. We're so proud of him. If you don't have the link handy, email me so I can send it to you.
I realized after I posted about Peanut's 4 month check up that Peanut is the same size at 4 1/2 months old as Little Man was at SIX months old. Crazy to me, especially considering Peanut was almost 2 months early when Little Man was only a month early. CRAZY!
And last but not least, a few pictures from our trip to DC.
Little Man with his adorable cousin.
Little Man making a face at me while feeding the ducks.
The 3 of them. Our niece (who was so upset we had to stick that pacifier in her mouth to get her to sit still, lol), Peanut & Little Man.
Remember how I said Peanut slept on the tray? Here it is. He slept like this basically the whole flight home.
Monday, June 30, 2008
Upper GI Results
I talked to Peanut's doc this morning about the upper GI he had done on Friday. The radiologist had already told me that his pylorus (the flap in the stomach) was spasming but I didn't want to talk about that until I'd talked to his doctor te get details. THANKFULLY it shouldn't need anything drastic and instead they are going to switch his medications. Oh I hope this is like a miracle for him. I can't tell you how awful it is to see him in such pain. And since things are getting worse, we will end up concerned about his rate of growth at some point.
Speaking of growth Peanut's 2 month check up is tomorrow morning. I think he's going to have gained A LOT of weight, esp thanks to all that rice cereal he gets.
Speaking of growth Peanut's 2 month check up is tomorrow morning. I think he's going to have gained A LOT of weight, esp thanks to all that rice cereal he gets.
Monday, June 23, 2008
The Numbers Are In!
Total cost for a 29 day NICU stay...$55K. That doesn't include any doctors charges, tests, etc. That is strictly to stay there. Although I'm pretty sure without looking over the details it does include his medications. All told this little adventure was well over $100K. Thank goodness for insurance! :)
Speaking of Peanut he's going to have an upper GI done on Friday. That doesn't particularly make either of us happy but his reflux is getting worse...not better. Little Man had one done and we felt so bad for him strapped to the board. Hopefully Peanut will just think he's being swaddled since he's so young.
I went ahead and attempted to take some pictures today. I can always upload it/them to multiple sites and buy a package instead of driving all the way to BFE to have pics done & then again to pick them up.
After I took some pictures of Peanut I remembered I had matching tops for the boys and figured I should go ahead and take pictures of them while I had things set up. I've been learning a program and tweaked a few of them with that. You'll have to let me know what you think of my first attempts here.
Here is his "official" 2 month picture...if you want to call it that.
Speaking of Peanut he's going to have an upper GI done on Friday. That doesn't particularly make either of us happy but his reflux is getting worse...not better. Little Man had one done and we felt so bad for him strapped to the board. Hopefully Peanut will just think he's being swaddled since he's so young.
I went ahead and attempted to take some pictures today. I can always upload it/them to multiple sites and buy a package instead of driving all the way to BFE to have pics done & then again to pick them up.
After I took some pictures of Peanut I remembered I had matching tops for the boys and figured I should go ahead and take pictures of them while I had things set up. I've been learning a program and tweaked a few of them with that. You'll have to let me know what you think of my first attempts here.
Here is his "official" 2 month picture...if you want to call it that.
And a few more:
It was really funny because Little Man is a bit funny about Peanut being ON him. He really doesn't know what to think of it and doesn't really like Peanut touching him. There was no way he was going to be able to hold Peanut up.
I'll be uploading these to the online photo album today or tomorrow (my head hurts) so that you can save them if you like. These are very low quality for the sake of posting them here.
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