We had Peanut's MRI today. Got there on time and they were able to take her back to Radiology Prep. fairly quickly too. And they even got her back to the MRI room on time. But then, we were delayed 30 minutes. They had an extremely difficult time getting an IV in her. They had given her the numbing cream to help, and they did it on both arms, both hands, and both feet!! They had to try 5 times, including the specialist. And my little Peanut - so odd!! She got upset when they made her lay down, since she couldn't sit up and watch them do the needle work. Crazy kid!! Of course, mommy held her hand, but just kept her head turned away!! I don't do needles!
They finally came and got us about an hour or so later, a little more actually. And then she was sitting up, talking, asking for food, being her normal stuff. In fact, we walked back to recovery and they were saying she was so good that they were going to move her to the second recovery area. That's where they give her something to eat, make sure she's moving OK, all that... And they got us out quick! She just rebounds pretty well, so she had some pudding, a couple of cookies, and we were on our way.
While we were there I picked up the referrals for the abdominal ultrasound they want to do, plus the 24 hour urine catch. So now I have to call and schedule the ultrasound. And I'll wait until next week to do the urine collection too. The order said about 5-6 different hormones and such that they'll be testing for. Of course, hubby and I thought it was odd that they haven't checked these things before. And obviously we don't have any results yet. I don't expect any for a few days. Especially since tomorrow is Friday and then the weekend. But we did get the CD copy with all the images. Only about 200 this time.
I'll be sure to update as soon as we know something. Just glad that this day is over, I'm exhausted. I could NOT fall asleep last night!! Oh, and of course Nutty Buddy enjoyed another day with G&G! They took him to an outdoor nature center and then to Portillo's for lunch! It's so great not having to worry about keeping him entertained when we have to spend these hours in the hospital!
Thursday, May 28, 2009
Wednesday, May 27, 2009
MRI is set for tomorrow
So, we thought there was going to be a last minute snafu, but we're all good. Her neuro-ophthalmologist wanted more done with the MRI, but her pediatrician Dr. S. thinks that an MRI on the abdominal area isn't the best way to go. He wanted to see about this certain tissue, but instead, they'll do a rectal ultrasound. Apparently it gives them better results for this hormone secretion than an MRI does. Plus, they'll do a 24 hour urine collection again too. They did that to check for Cushing's Syndrome a few months ago.
This means that tomorrow will just be a cervical spine MRI. Not sure what that will tell them. It's possible that it will give them answers for the nystagmus. But, who knows! I've given up thinking that each test will give them any sort of answers, since we never seem to find any. And yet I continue to hope too.
I'll update after tomorrow we get home.
This means that tomorrow will just be a cervical spine MRI. Not sure what that will tell them. It's possible that it will give them answers for the nystagmus. But, who knows! I've given up thinking that each test will give them any sort of answers, since we never seem to find any. And yet I continue to hope too.
I'll update after tomorrow we get home.
Friday, May 22, 2009
Update from the neuro-ophthalmologist appointment
So, we spent 3.5 hours with Dr. B today. He was a really nice man, very thorough, extremely knowledgeable and we felt that he was really a great doctor. He did a lot of the same type of testing that the other eye docs have done, but obviously, with other thoughts in mind. When he was checking both of Peanut's eyes, then we could really see how much jumping goes on in each of her eyes. So it's not just the left one, the right one has it too.
We did learn that she has downbeat vertical nystagmus, which is certainly not that common, but the downbeat is better than the upbeat. Basically it means that her eye will move up slowly, but then move back down really fast. They categorize it based on which direction the eye jumps fast. So hers does it going down. Which is also better, it leads to less problems with the tilting of the head.
As for now, we don't have any answers on what's causing it. He's trying to determine if it was an acquired nystagmus or congenital. He's thinking it's more than likely congenital, meaning she's had it since birth. It's just one of those things that you don't necessarily notice, unless you're looking for it. So we can't say for sure how long it's been going on. We know that most likely about a year. But we were so worried about the other health issues, that we didn't get to the optical stuff until later.
He did give us several possibilities. And of course, they run the gamete. It could possibly be something that she will have to live with. As of now, if that's the case, then he wouldn't do surgery at this age. Her brain may have already compensated for the difference in her vision, but as she gets older she may have some more cosmetic reasons to correct it surgically. Another thing that he mentioned was something known as the Arnold-Chairi malformation. This has to do with the a relatively common syndrome involving displacement of the cerebellar tonsils below the level of the foramen magnum. It's all the technical stuff I got from another site. But hopefully the MRI will be able to show some of these things. There were some other things too, but honestly, there was so much to absorb. The worst case scenario is that there's a tumor of some kind. And he did mention neuroblastoma, which is a cancer that happens in children.
Soo... now we have to wait until the MRI at least. Then we can hopefully rule out some things, or even better, have a direction on which to go. And this doesn't even have anything to do with the weight issues. At least, not that we know of. So we have 6 more days until the MRI takes place. We also have her ophthalmologist apt. in about 2.5 weeks. She's not scheduled to see Dr. B. again until July 10th. Of course, this will all depend on the MRI results. If something shows up, then he'll bring us back sooner.
We did learn that she has downbeat vertical nystagmus, which is certainly not that common, but the downbeat is better than the upbeat. Basically it means that her eye will move up slowly, but then move back down really fast. They categorize it based on which direction the eye jumps fast. So hers does it going down. Which is also better, it leads to less problems with the tilting of the head.
As for now, we don't have any answers on what's causing it. He's trying to determine if it was an acquired nystagmus or congenital. He's thinking it's more than likely congenital, meaning she's had it since birth. It's just one of those things that you don't necessarily notice, unless you're looking for it. So we can't say for sure how long it's been going on. We know that most likely about a year. But we were so worried about the other health issues, that we didn't get to the optical stuff until later.
He did give us several possibilities. And of course, they run the gamete. It could possibly be something that she will have to live with. As of now, if that's the case, then he wouldn't do surgery at this age. Her brain may have already compensated for the difference in her vision, but as she gets older she may have some more cosmetic reasons to correct it surgically. Another thing that he mentioned was something known as the Arnold-Chairi malformation. This has to do with the a relatively common syndrome involving displacement of the cerebellar tonsils below the level of the foramen magnum. It's all the technical stuff I got from another site. But hopefully the MRI will be able to show some of these things. There were some other things too, but honestly, there was so much to absorb. The worst case scenario is that there's a tumor of some kind. And he did mention neuroblastoma, which is a cancer that happens in children.
Soo... now we have to wait until the MRI at least. Then we can hopefully rule out some things, or even better, have a direction on which to go. And this doesn't even have anything to do with the weight issues. At least, not that we know of. So we have 6 more days until the MRI takes place. We also have her ophthalmologist apt. in about 2.5 weeks. She's not scheduled to see Dr. B. again until July 10th. Of course, this will all depend on the MRI results. If something shows up, then he'll bring us back sooner.
Tuesday, May 19, 2009
Busy days ahead
Tomorrow, the kids have their open house for kindergarten. As usual, Peanut is nervous about it all. She doesn't think she wants to go to kindy next year. I've tried to explain that she'll get to have art, music, computers, and gym time, which makes her happy. But the thought of being in school for more than the 90 minutes they currently are, makes her a little uneasy! However, she does enjoy doing things, so I know once she's there, she'll have fun. And Nutty Buddy is just fine. He doesn't usually worry about much of anything.
They also have their dentist appointment after that. Peanut's been asking when they were going again, since their last appointment. It's nice that she's exciting about it, considering my own fears of the dentist!! But she loves it. Plus, she'll get to show off the 2 new teeth that she's gotten in over the past few months. Nutty Buddy doesn't like that he hasn't lost any yet, and I just tell him that he's got really strong teeth, so they're hanging on for awhile yet.
And of course, after all that is the nuero-ophthalmologist appointment. As least Nutty Buddy is staying with G&G, so he doesn't have to sit in the office there for the 3-4 hours we'll be there. I'm a little nervous about it. Just wondering what they're looking for, what they think is going on, where the next step will be. I certainly trust the doctors, that's not it at all. But, nobody's told us anything definite along the way. I imagine if they had some inkling, they would have said something. So, we'll just have to wait and see what they say on that day.
On a side note, my computer was messed up for the past few days. And I'm so happy to have it fixed!! Went to the little shop that we'd been to before, and $27 and 45 minutes later, it was fixed! Like someone said, getting anything fixed for $27 is amazing! But all of my stuff is back, my toolbars are working, things are good again!
They also have their dentist appointment after that. Peanut's been asking when they were going again, since their last appointment. It's nice that she's exciting about it, considering my own fears of the dentist!! But she loves it. Plus, she'll get to show off the 2 new teeth that she's gotten in over the past few months. Nutty Buddy doesn't like that he hasn't lost any yet, and I just tell him that he's got really strong teeth, so they're hanging on for awhile yet.
And of course, after all that is the nuero-ophthalmologist appointment. As least Nutty Buddy is staying with G&G, so he doesn't have to sit in the office there for the 3-4 hours we'll be there. I'm a little nervous about it. Just wondering what they're looking for, what they think is going on, where the next step will be. I certainly trust the doctors, that's not it at all. But, nobody's told us anything definite along the way. I imagine if they had some inkling, they would have said something. So, we'll just have to wait and see what they say on that day.
On a side note, my computer was messed up for the past few days. And I'm so happy to have it fixed!! Went to the little shop that we'd been to before, and $27 and 45 minutes later, it was fixed! Like someone said, getting anything fixed for $27 is amazing! But all of my stuff is back, my toolbars are working, things are good again!
Sunday, May 17, 2009
MRI has been scheduled
So we'll be going in on the 28th for another MRI. This time, they want to take it over her brain stem and spinal cord, with and without contrast. I honestly don't know exactly what they're looking for. And once again, she'll have to be intubated. Daddy is going to try and be with her this time too. We'll have to see if G&G can watch Nutty Buddy so he doesn't have to sit up at the hospital.
Peanut has to be up there by 11:30 to check in, then the MRI is at 1:00 p.m. Which kinda sucks, cuz she can't have anything to eat or drink that entire morning. Poor kid! And she knows that she can't have anything.
Peanut has to be up there by 11:30 to check in, then the MRI is at 1:00 p.m. Which kinda sucks, cuz she can't have anything to eat or drink that entire morning. Poor kid! And she knows that she can't have anything.
Wednesday, May 13, 2009
Should be scheduling her MRI soon
Talked to Dr. S. today and she gave me the info to call to set up the MRI for Peanut. It's going to be of the spine as well. Originally, they said the brain stem, but it sounds like they'll get more while they're doing it. Plus, it'll be with and without contrast. I'm not sure what they're looking for. Honestly, anything involving the spine makes me nervous and worried. I'm sure they're looking for more of the causes with her vision and the nystagmus. I don't see how any of this will be related to the weight issue. But then again, who the heck knows!! We see Dr. B. next Friday, he's the neuro-ophthalmologist. I'm not sure if we'll get this MRI done before that visit.
On another note, my own health issues finally caught up to me. I had a root canal started back in September, but never went in to get it finished. It had been fine for all this time, until the past weekend. I managed to get in the dentist yesterday so he could clean it out, replace the temporary filling, and set up the next appointment in 2 weeks.
I just hope the next week goes by quickly so we can get to the N-O appointment. Being a minimal 3 hour apt., that should be interesting!
On another note, my own health issues finally caught up to me. I had a root canal started back in September, but never went in to get it finished. It had been fine for all this time, until the past weekend. I managed to get in the dentist yesterday so he could clean it out, replace the temporary filling, and set up the next appointment in 2 weeks.
I just hope the next week goes by quickly so we can get to the N-O appointment. Being a minimal 3 hour apt., that should be interesting!
Tuesday, May 5, 2009
Had a follow up apt. today
This afternoon we saw Dr. S., our NEW pediatrician. I even scheduled their back to school physicals with her today, so that they're set! Anyway, she listened to her lungs, said they're still not perfect, but definitely better than they were in the hospital. And I have to say, Peanut's done so good with her meds! She had to take an oral medicine, that was only in pill form. So she had to swallow 2-4 pills each time. But she finished them today. She still has the oral abx. to finish, but that's a liquid, so it's easier.
Dr. S. did say that her chest CT scan came back clear and normal, so that was good. And she's going to look into scheduling her MRI. She wants to talk to the neurologists to see if they want it done before the eye specialist or after. She's not sure if the neuro-ophthalmologist will have more scans that he will want. Since Peanut has to be intubated, not sedated, they want to make sure that they do as much at one time as possible. So far, it'll be her brain stem and the hypothalamus I think. But she told us to call her on Friday if she doesn't call us before then.
I must say, I did not like Dr. S. the one time we saw her for a sick child appointment about 3 years ago or so. I thought she was somewhat off, that she wanted me to diagnose my child. But I've certainly come to like her much more. Plus, she's been seeing Peanut in the hospital, so she's been familiar with her history and how she presents when she's so sick. And I like how she said what she was going to do, and how we should call her if we didn't hear from her. And that she wants to ensure the MRI gets all the imaging they need at one time!
So, I think we'll stay with this office for now. I was totally ready to switch offices. But, as long as we're getting this better care and service with her, I'm willing to stay. I didn't like the thought of changing, simply cuz all her history is there, plus it's her hospital, so that's good.
Dr. S. did say that her chest CT scan came back clear and normal, so that was good. And she's going to look into scheduling her MRI. She wants to talk to the neurologists to see if they want it done before the eye specialist or after. She's not sure if the neuro-ophthalmologist will have more scans that he will want. Since Peanut has to be intubated, not sedated, they want to make sure that they do as much at one time as possible. So far, it'll be her brain stem and the hypothalamus I think. But she told us to call her on Friday if she doesn't call us before then.
I must say, I did not like Dr. S. the one time we saw her for a sick child appointment about 3 years ago or so. I thought she was somewhat off, that she wanted me to diagnose my child. But I've certainly come to like her much more. Plus, she's been seeing Peanut in the hospital, so she's been familiar with her history and how she presents when she's so sick. And I like how she said what she was going to do, and how we should call her if we didn't hear from her. And that she wants to ensure the MRI gets all the imaging they need at one time!
So, I think we'll stay with this office for now. I was totally ready to switch offices. But, as long as we're getting this better care and service with her, I'm willing to stay. I didn't like the thought of changing, simply cuz all her history is there, plus it's her hospital, so that's good.
Friday, May 1, 2009
Day 1, post-hospital
We made it through the first day at home, after the hospital. Both kids are doing just fine too. The little Peanut is totally herself, no problems at all, just her normal attitude issues! But she slept OK last night. She had Daddy in there, which she complains about. However, we had the home health care company come out today and they set the alarm on her BiPap now. So, this means we don't need to be in there all the time. If it loses the seal or if she pulls the hose off (which she has), the alarm goes off after 15 seconds. It's just one less thing that we have to worry about now. We also have the band-aid style Pulse Ox thing, so we can keep it on her toe now.
We also got a wonderful surprise today! My good friend J. came over, she said she had something for us. Well, the moms in my twins club, a bunch of them got together to chip in for gifts for us. They gave us gift cards for Target, Shell gas, Jewel, Jimmy John's, and another local restaurant. And some chocolate for us!! Oh yeah, and some coloring/craft things for each of the kids. It was so unexpected and greatly appreciated. Just so sweet of them!
For us, it's mostly been getting back into the swing of things. It's so odd being gone for this many days. Although I was at home almost every night, I just didn't get anything done. So today was catching up on bills, making all the doctor's calls, grocery shopping (well, had to do that yesterday), and cleaning up the house a bit. Oh yeah, and laundry! Blah!!
The most important doctor, the neuro-ophthalmologist is scheduled. And it's only 3 weeks away! So that was good. It will be a 3 hour appointment too, so G&G will watch Nutty Buddy! That's way too long for him to sit there. And we were told that it would be really long, lots of tests, lots of machines, so it's better for just mommy & daddy to be there with her. And then she'll see the Pulminologist in just over a month. And her pediatrician next week. Oh yeah, and not Dr. B.! We told Dr. S. who she had been seeing in the hospital, since she did rounds there, that we'd rather see her. Plus, we didn't want to see Dr. B. anymore, anyway. We didn't come right out, but just hinted at the fact that we weren't comfortable with him.
She also mentioned that she had heard whispers of a rumor that we were looking for another endocrinologist for a second opinion. We told her that was true, and again, somewhat explained why. And although we seem to be moving away from the endocrine issues, and more towards the neurological ones, that it may not be totally necessary. But we're keeping the appointment, and she even agreed, she said it never hurts to keep another appointment and use it. And since it's not until July, there's no hurry.
Anyway, I think that's it for now... I'm sure I'll be slower with postings again. Not as much going on anymore. Thanks again for all the kind words!!
We also got a wonderful surprise today! My good friend J. came over, she said she had something for us. Well, the moms in my twins club, a bunch of them got together to chip in for gifts for us. They gave us gift cards for Target, Shell gas, Jewel, Jimmy John's, and another local restaurant. And some chocolate for us!! Oh yeah, and some coloring/craft things for each of the kids. It was so unexpected and greatly appreciated. Just so sweet of them!
For us, it's mostly been getting back into the swing of things. It's so odd being gone for this many days. Although I was at home almost every night, I just didn't get anything done. So today was catching up on bills, making all the doctor's calls, grocery shopping (well, had to do that yesterday), and cleaning up the house a bit. Oh yeah, and laundry! Blah!!
The most important doctor, the neuro-ophthalmologist is scheduled. And it's only 3 weeks away! So that was good. It will be a 3 hour appointment too, so G&G will watch Nutty Buddy! That's way too long for him to sit there. And we were told that it would be really long, lots of tests, lots of machines, so it's better for just mommy & daddy to be there with her. And then she'll see the Pulminologist in just over a month. And her pediatrician next week. Oh yeah, and not Dr. B.! We told Dr. S. who she had been seeing in the hospital, since she did rounds there, that we'd rather see her. Plus, we didn't want to see Dr. B. anymore, anyway. We didn't come right out, but just hinted at the fact that we weren't comfortable with him.
She also mentioned that she had heard whispers of a rumor that we were looking for another endocrinologist for a second opinion. We told her that was true, and again, somewhat explained why. And although we seem to be moving away from the endocrine issues, and more towards the neurological ones, that it may not be totally necessary. But we're keeping the appointment, and she even agreed, she said it never hurts to keep another appointment and use it. And since it's not until July, there's no hurry.
Anyway, I think that's it for now... I'm sure I'll be slower with postings again. Not as much going on anymore. Thanks again for all the kind words!!
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