Thursday, April 10, 2008
Going Private...
I'm afraid I've been freaked out by comments made by people I have NO clue who they are and they don't even speak my language so I've decided to make my blog private. I really don't care who visits the blog as long as they're decent human beings. Like I've said before, I LOVE to blog surf and probably will continue, but I feel somewhat that my children's safety could be at stake, and I know I'm probably over reacting but it's better to be safe than sorry. So with that said, please send me your email address to tracim1@juno.com or leave it as a comment on here so you can be invited to view our blog. And after it's private and someone you know wants to look at our blog, just have them send me their email or you can send me their email. I don't mind that at all. I really hate that we live in a world where I have to be afraid of who's looking at pictures of my kids!
Tuesday, April 8, 2008
Easter
Here's some Easter pics for your viewing pleasure. I'll try to post them real quick but my cut off time is midnight (25 minutes) so I might have to post more tomorrow!
These are pictures of the Easter Egg hunt we went to the day before Easter. Since we moved here (in 2005) we've been going to Heather and Justin's (Rhett's sister and her hubby) neighborhood Easter egg hunt. It's a blast! It's only for kids 8 and younger. They let the kids 3 and younger go first (Bennett barely made the cut off!). Then they let all the other kids go. But there are so many eggs that everyone ends up filling their baskets and then some! Bennett filled his basket and then helped Jordan fill hers. There was this little boy who was probably 5 who was going to town! He had a huge basket overflowing with eggs and then he started stuffing his cargo pants with as many eggs as his pockets would hold. It was hilarious! These pictures are just 1/4 or less of how big the retention basin is, and it's covered with eggs.
In these couple pictures Bennett and Jordan are waiting for the hunt to begin. So patient =). The know the candy isn't far away!
Some fun "hunt in progress" pics.
I LOVE the running pictures!
Peek - a -
BOO!
Jordan LOVES her Grammy!
Gotta love Uncle Justin! He gives me candy!
These are pictures of the Easter Egg hunt we went to the day before Easter. Since we moved here (in 2005) we've been going to Heather and Justin's (Rhett's sister and her hubby) neighborhood Easter egg hunt. It's a blast! It's only for kids 8 and younger. They let the kids 3 and younger go first (Bennett barely made the cut off!). Then they let all the other kids go. But there are so many eggs that everyone ends up filling their baskets and then some! Bennett filled his basket and then helped Jordan fill hers. There was this little boy who was probably 5 who was going to town! He had a huge basket overflowing with eggs and then he started stuffing his cargo pants with as many eggs as his pockets would hold. It was hilarious! These pictures are just 1/4 or less of how big the retention basin is, and it's covered with eggs.
In these couple pictures Bennett and Jordan are waiting for the hunt to begin. So patient =). The know the candy isn't far away!
Some fun "hunt in progress" pics.
I LOVE the running pictures!
Peek - a -
BOO!Jordan LOVES her Grammy!
Gotta love Uncle Justin! He gives me candy!So I managed 15 pictures in a half hour! Not bad. I'll try to post round 2 tomorrow. Those will have more pictures from Easter Sunday and not the hunt leading up to it =). And maybe some video too. That's always fun.
Monday, April 7, 2008
Trying to get on the ball!!
I'm really going to try hard to post more =). I'm such a big blog reader. I love trying to find old friends blogs and I'll search for hours! It definitely doesn't help me sleep! I'm going to set a goal for myself to be in bed by 11pm every night. That'll be hard but I'm sure I'll get the hang of it. No more staying up reading blogs until 1am =).
I have lots of pics to post to catch up but I know I'll feel better when I do. I tend to not organize my pictures until I have what I want posted online. So here we go!!
Jordan Update:
Jordan goes to meet with her neurosurgeon again a week from Wednesday, on the 16th I think. He said that he talked to a neuroradiologist and now understands better the anatomy going on in Jordan's back/spine but he still doesn't know what happened or why things are the way they are. So we'll see what he says when we talk to him.
Here's Bennett's "green bike" from Santa. He was so excited Christmas morning!
Jordan got this little "car" from Grandma McBride. She LOVES it! She gets to sit up so big like a big girl. She still plays with it every day =)
Bennett is so creative! I have to help him with the second T at the end since our letters only came with 1. He can do the rest though!
And he's pretty creative with his blocks too! If you're lacking in the creative zone today, it's a truck.
I have lots of pics to post to catch up but I know I'll feel better when I do. I tend to not organize my pictures until I have what I want posted online. So here we go!!
Jordan Update:
We found out last week that Jordan has a fracture in her leg. During one of her physical therapy sessions we were trying to get her fit into a new piece of equipment she recently received called a "stander". It's suppose to let her legs get some weight bearing feeling and hopefully help with her leg muscles. If nothing else, she'd be standing upright with a tray in front of her to play more like a normal child. We could NOT get her into it! With her foot and hip in the right place her knee would turn outward. Strange. So we got her out of it and we were feeling her leg and noticed that there was sort of a dent underneath her knee. We weren't really sure what it was but just knew that the anatomy wasn't quite right. So I got her an appointment with her orthopedic guy at her clinic in Phoenix to get his opinion. He took an xray of her knee and also of her hips. He saw that her right hip is dislocated (pretty common for SB kids) and one of the bones has a fracture in her left leg, right underneath her knee. He said that for a typical kid they'd be in a TON of pain and they'd have to cast the leg. But for Jordan, she doesn't feel anything. And with her not moving her leg, they didn't need to cast it. The xrays showed that the bone was already healing. He also told us that for some reason the tendons in the back of the knee get really thick. They'll end up being 3 times thicker than adult tendons. They're not really sure why this happens. The tendon actually gets so strong that it's stronger than the bone. So with Jordan, we've noticed that her knee and leg has gotten really tight. I'll post some pics of her leg. It's constantly bent at the knee and doesn't ever go completely straight. So, we've been stretching it out like we've been told to do by multiple people/doctors. This is where the fracture comes into play. Her tendons are stronger than the bone. We try to stretch the tendon but instead the bone fractures. Great!!! So basically we just can't stretch it anymore. 
Here's a picture that show's her knee. I don't remember when I took this though =). Look at her left knee and how it's bent.
Here's a picture that show's her knee. I don't remember when I took this though =). Look at her left knee and how it's bent. Jordan goes to meet with her neurosurgeon again a week from Wednesday, on the 16th I think. He said that he talked to a neuroradiologist and now understands better the anatomy going on in Jordan's back/spine but he still doesn't know what happened or why things are the way they are. So we'll see what he says when we talk to him.
Here's Bennett's "green bike" from Santa. He was so excited Christmas morning!
Jordan got this little "car" from Grandma McBride. She LOVES it! She gets to sit up so big like a big girl. She still plays with it every day =)Bennett is so creative! I have to help him with the second T at the end since our letters only came with 1. He can do the rest though!
And he's pretty creative with his blocks too! If you're lacking in the creative zone today, it's a truck.
Rhett got a big bird kite from my parents as part of his birthday present back in Feb. It was fun to try it out but we figured out really fast that we don't know how to fly a kite. Plus, it seems whenever it's windy, it's really just in spurts. It's hard to keep a kite up for a long time with spurty wind. That's not a word. Oh well =)
There's my blogging for the day. I've spent a couple hours going through my pictures and after narrowing it down from over 1,000 to about 60 or so, this is what I came up with! I'm saving my pictures from Easter and on until tomorrow. Hopefully tomorrow! Bennett has preschool, Jordan has Speech Therapy for 2 hours and Physical therapy for 1 hour, Bennett has a birthday party, and Jordan has a doctors appointment in Phoenix with her gastroenterologist (or however you spell it!). I promise I'll try to make time to post more pics. I'm determined to catch up!
Thursday, March 20, 2008
Unfortunate Post
I've been putting off writing out this post but you all deserve to hear how Jordan's doing since she's in so many of your prayers.
We went in to get her scans and talk to the neurosurgeon yesterday. It was a really long day. Poor dolly. We had to check in at the hospital at 8:15am, and with it being downtown Phoenix during rush hour, there was no way I was cutting it close. So we left home around 7 and got there right before 8 so we weren't rushed which was good. I got on the freeway to get home around 4:45pm. So, ALL day! It's hard to decide where to start...
We first went and got some iodine dye injected in through Jordan's shunt. It's suppose to go through and illuminate the spinal fluid so that during the CT scans you can better see where all the fluid is going. So typically that's in the ventricles of her brain, and down her spine area. Then after that she had her CT scans done, under anesthesia. She had to be totally still during the whole procedure and there's no way of that happening with a 2 year old=). The CT was of the cranium, c-spine (cervical spine- basically the neck area), and the upper thoracic (pronounced thorasic). Jordan did really good during the scans. I was right there by her side when she woke up but she was sure to keep an eye on those nurses all around. We went and grabbed some lunch while we waited for our appointment to talk to the Doctor.
When Dr. Rekate (Jordan's neurosurgeon) first came in to see Jordan, he asked me how she was doing overall. I explained that she hasn't been feeling well and has been extra cranky and all that good stuff. He asked how her swollowing, sucking, coughing, and arm weakness was doing. I told him they're still there but definitely better than they have been in the past. He excused himself from the room to call his nurse practitioner to have her remind him why we had the CT's done. She told him that it was because of the above mentioned reasons (I reminded him later that it was because Jordan regressed in her movement. She had started rolling over for a good chunk of time and then stopped). He came back into the room and told us that according to the scans, everything that could possibly be done to help those issues (the feeding/arm strength issues) has been done, and that those areas (head and neck) look great. He said the "cysts" on the thoracic part of her spine are from her "thoracic spina bifida" and that he'd only be able to tell more what they are if they opened her up, and he didn't feel that was necessary. So I asked him a question- If she has thoracic spina bifida (pretty much the middle back area), why was the lesion (hole) on her back so much lower when she was born? Remember, we were originally told that her spina bifida was around L4, L5, or maybe even S1. Now we're being told it's T6 or T7! You can see what a HUGE difference that is. Here's a diagram...
Hopefully that helps =). I know it helps me talk about it better. So, there's no easy way to explain what's going on. So I'll lay it all out there. The Doc said that Jordan has a bunch of cysts around T6/T7 area that are basically making her spinal cord flat like a ribbon, when it should be round and full and smooth. He said that all the spinal cord under the cyst area is really weak and small, and basically that there's not much of it there. In a nut shell, she has no functioning nerves/spinal cord from her chest area down. You can see on the chart what that effects on her body. A lot. NO chance of walking. Dr. Rekate is AMAZING. He's world renown with the work he does for these kids. He travels around the world teaching other neurosurgeons how to do things. They fly here to watch him. He's incredible. The best of the best. He told me that he's been working with spina bifida kids since 1970 (plus he does brain/spinal cancer, and all that kind of good "brain surgeon" stuff...) and he thought he'd seen everything he was going to come across. He has NO clue what this is, what could have caused it, or what to do about it. Is it causing Jordan pain? Maybe. Maybe not. Surgery? Maybe. Maybe not. Some possible reasons for the cysts: 1. Spinal stroke. Rhett and I feel this is possible since Jordan did have a stroke in the womb that caused her cerebellum to not be there. 2. The Doc said that amniotic fluid is "toxic" to spinal fluid. If too much of the 2 fluids mixed in the womb, it could cause these cysts. To us, very possible since her back wasn't closed in that lower area, and most kids have a sac like structure around the opening to somewhat protect it. Jordan didn't have any covering over her lesion. 3. With how bad Jordan's hydrocephalus was when she was younger, there was a really high about of pressure in her brain. Also with her Chiari syndrome in her neck, tons of pressure there. It's possible that all the pressure built up so much that her spinal fluid shot down the spinal cord so fast that it caused this damage. Again, they don't know for sure. This was the first MRI she had on her spine (the scan she had done in Feb.). They have no base line to go off of. They were so worried about all the other problems she had when she was younger that they didn't think to do any scans of her back. Plus, a typical spina bifida kid wouldn't have back issues like this... We now know that Jordan is anything but typical!
Dr. Rekate goes to a radiology meeting type thing on Monday where people get together to discuss cases they're unsure of what to do, get advice from others, bounce ideas off each other, that type of thing. He's going to present Jordan's case and see what others have to say. He's not sure what else others would know that he doesn't, but he's going to try. He's been at this profession for so long, and is so good at everything with the brain/spine! But I guess Jordan just wanted to throw him a fast curve ball. Stinker. He said that he wants to have answers for us but he needs time. He needs time to research things and try to come up with answers. He told me that if I don't hear from him within a week to email him and see what's going on. I appreciate his honesty so much. I don't think that being forthcoming is a typical thing with Doctors nowadays!
We also found out that Jordan has what's called "tethered cord". This is where the scar tissue from her initial back closure wraps itself around her spinal cord. In a typical spina bifida kid there would be a ton of discomfort, they would have a hard time moving, etc. The spine is suppose to be free flowing, not held in place by scar tissue. They would typically "detether" the area, or cut the scar tissue away from the cord so it can continue functioning. This is an ongoing thing in their lives. You cut away the scar tissue, it reattaches. These kids can have surgery after surgery with the same issue. The doctor said that since Jordan is paralyzed so much higher than where it's attached, she doesn't feel the pain a typical kid would down there. Also, with her weak spinal cord, she's already at a really high risk of having scoliosis. If he released what's holding her spine in a straight line right now, it would be really bad. So at least we don't have to worry about those surgeries!
I've been having a really hard time with all this news since I heard it. I know that Jordan is the same Jordan she was before we heard this all, but I just feel so bad for her. She tries to be so happy all the time but I can see a lot of the time that she is in a lot of pain and is just trying to fight through it. It's just not fair. And I hate saying that because life isn't fair. But she just needs a break. And Rhett and I know we need to be the strong ones for her. She's going to have such a rough life ahead of her. She's got such a good brother that I know will be her support through growing up. They're such good friends and they love each other so much. It's just that the more time moves on I see how little she's progressing in comparison to other kids her age. I mean, she's 2 1/2! The girl can't even sit up or roll over on her own. How is she going to be part of marching band, and go to prom, or dance, or do anything that every little girl dreams of doing!? Boy, I need to get myself together. Enough of that! Sorry for just letting loose there. Sometimes it all really gets to me. But through all this I know that Heavenly Father and Christ are watching over her. And that's what makes me cry the most. I know They are hurting for her just as much as we are. I pray for their comfort frequently and have been so blessed to feel their reassurances and a general peace coming over me as soon as I turn to them for help. Thank you all for your support. I don't think there are better friends and family than what we have. We love you all. Bare with us through our trials!
We went in to get her scans and talk to the neurosurgeon yesterday. It was a really long day. Poor dolly. We had to check in at the hospital at 8:15am, and with it being downtown Phoenix during rush hour, there was no way I was cutting it close. So we left home around 7 and got there right before 8 so we weren't rushed which was good. I got on the freeway to get home around 4:45pm. So, ALL day! It's hard to decide where to start...
We first went and got some iodine dye injected in through Jordan's shunt. It's suppose to go through and illuminate the spinal fluid so that during the CT scans you can better see where all the fluid is going. So typically that's in the ventricles of her brain, and down her spine area. Then after that she had her CT scans done, under anesthesia. She had to be totally still during the whole procedure and there's no way of that happening with a 2 year old=). The CT was of the cranium, c-spine (cervical spine- basically the neck area), and the upper thoracic (pronounced thorasic). Jordan did really good during the scans. I was right there by her side when she woke up but she was sure to keep an eye on those nurses all around. We went and grabbed some lunch while we waited for our appointment to talk to the Doctor.
When Dr. Rekate (Jordan's neurosurgeon) first came in to see Jordan, he asked me how she was doing overall. I explained that she hasn't been feeling well and has been extra cranky and all that good stuff. He asked how her swollowing, sucking, coughing, and arm weakness was doing. I told him they're still there but definitely better than they have been in the past. He excused himself from the room to call his nurse practitioner to have her remind him why we had the CT's done. She told him that it was because of the above mentioned reasons (I reminded him later that it was because Jordan regressed in her movement. She had started rolling over for a good chunk of time and then stopped). He came back into the room and told us that according to the scans, everything that could possibly be done to help those issues (the feeding/arm strength issues) has been done, and that those areas (head and neck) look great. He said the "cysts" on the thoracic part of her spine are from her "thoracic spina bifida" and that he'd only be able to tell more what they are if they opened her up, and he didn't feel that was necessary. So I asked him a question- If she has thoracic spina bifida (pretty much the middle back area), why was the lesion (hole) on her back so much lower when she was born? Remember, we were originally told that her spina bifida was around L4, L5, or maybe even S1. Now we're being told it's T6 or T7! You can see what a HUGE difference that is. Here's a diagram...
Hopefully that helps =). I know it helps me talk about it better. So, there's no easy way to explain what's going on. So I'll lay it all out there. The Doc said that Jordan has a bunch of cysts around T6/T7 area that are basically making her spinal cord flat like a ribbon, when it should be round and full and smooth. He said that all the spinal cord under the cyst area is really weak and small, and basically that there's not much of it there. In a nut shell, she has no functioning nerves/spinal cord from her chest area down. You can see on the chart what that effects on her body. A lot. NO chance of walking. Dr. Rekate is AMAZING. He's world renown with the work he does for these kids. He travels around the world teaching other neurosurgeons how to do things. They fly here to watch him. He's incredible. The best of the best. He told me that he's been working with spina bifida kids since 1970 (plus he does brain/spinal cancer, and all that kind of good "brain surgeon" stuff...) and he thought he'd seen everything he was going to come across. He has NO clue what this is, what could have caused it, or what to do about it. Is it causing Jordan pain? Maybe. Maybe not. Surgery? Maybe. Maybe not. Some possible reasons for the cysts: 1. Spinal stroke. Rhett and I feel this is possible since Jordan did have a stroke in the womb that caused her cerebellum to not be there. 2. The Doc said that amniotic fluid is "toxic" to spinal fluid. If too much of the 2 fluids mixed in the womb, it could cause these cysts. To us, very possible since her back wasn't closed in that lower area, and most kids have a sac like structure around the opening to somewhat protect it. Jordan didn't have any covering over her lesion. 3. With how bad Jordan's hydrocephalus was when she was younger, there was a really high about of pressure in her brain. Also with her Chiari syndrome in her neck, tons of pressure there. It's possible that all the pressure built up so much that her spinal fluid shot down the spinal cord so fast that it caused this damage. Again, they don't know for sure. This was the first MRI she had on her spine (the scan she had done in Feb.). They have no base line to go off of. They were so worried about all the other problems she had when she was younger that they didn't think to do any scans of her back. Plus, a typical spina bifida kid wouldn't have back issues like this... We now know that Jordan is anything but typical!
Dr. Rekate goes to a radiology meeting type thing on Monday where people get together to discuss cases they're unsure of what to do, get advice from others, bounce ideas off each other, that type of thing. He's going to present Jordan's case and see what others have to say. He's not sure what else others would know that he doesn't, but he's going to try. He's been at this profession for so long, and is so good at everything with the brain/spine! But I guess Jordan just wanted to throw him a fast curve ball. Stinker. He said that he wants to have answers for us but he needs time. He needs time to research things and try to come up with answers. He told me that if I don't hear from him within a week to email him and see what's going on. I appreciate his honesty so much. I don't think that being forthcoming is a typical thing with Doctors nowadays!
We also found out that Jordan has what's called "tethered cord". This is where the scar tissue from her initial back closure wraps itself around her spinal cord. In a typical spina bifida kid there would be a ton of discomfort, they would have a hard time moving, etc. The spine is suppose to be free flowing, not held in place by scar tissue. They would typically "detether" the area, or cut the scar tissue away from the cord so it can continue functioning. This is an ongoing thing in their lives. You cut away the scar tissue, it reattaches. These kids can have surgery after surgery with the same issue. The doctor said that since Jordan is paralyzed so much higher than where it's attached, she doesn't feel the pain a typical kid would down there. Also, with her weak spinal cord, she's already at a really high risk of having scoliosis. If he released what's holding her spine in a straight line right now, it would be really bad. So at least we don't have to worry about those surgeries!
I've been having a really hard time with all this news since I heard it. I know that Jordan is the same Jordan she was before we heard this all, but I just feel so bad for her. She tries to be so happy all the time but I can see a lot of the time that she is in a lot of pain and is just trying to fight through it. It's just not fair. And I hate saying that because life isn't fair. But she just needs a break. And Rhett and I know we need to be the strong ones for her. She's going to have such a rough life ahead of her. She's got such a good brother that I know will be her support through growing up. They're such good friends and they love each other so much. It's just that the more time moves on I see how little she's progressing in comparison to other kids her age. I mean, she's 2 1/2! The girl can't even sit up or roll over on her own. How is she going to be part of marching band, and go to prom, or dance, or do anything that every little girl dreams of doing!? Boy, I need to get myself together. Enough of that! Sorry for just letting loose there. Sometimes it all really gets to me. But through all this I know that Heavenly Father and Christ are watching over her. And that's what makes me cry the most. I know They are hurting for her just as much as we are. I pray for their comfort frequently and have been so blessed to feel their reassurances and a general peace coming over me as soon as I turn to them for help. Thank you all for your support. I don't think there are better friends and family than what we have. We love you all. Bare with us through our trials!
Tuesday, March 18, 2008
Update!
I'm excited and nervous to say that Jordan is having her scans TOMORROW! I just got a call from her hospital saying that they only do pediatric anesthesia on Wednesdays so instead of Monday, it's tomorrow morning! I know it's only 5 days away but it's seriously been like Christmas (my anxiety, not the looking forward to it part...!) with waiting to have the scans done. So, don't forget to keep Jordan in your prayers, and also please pray for her doctors that they'll be able to figure out what they're looking at and know what to do to help Jordan. We love you all! Thank you so much for your support and help.
Now I need to get going with cleaning my house! It's a possibility, depending on what they find with the scans, that Jordan will be admitted to the hospital. At that point, my house always takes a big hit. It's hard to keep up on it when I'm at the hospital 24/7. And yes, Rhett does help but it's not done MY way when he does it =). So off to clean, do laundry, and spend a little extra time with Bennett. He has such a hard time when his sissy isn't around. =(
Now I need to get going with cleaning my house! It's a possibility, depending on what they find with the scans, that Jordan will be admitted to the hospital. At that point, my house always takes a big hit. It's hard to keep up on it when I'm at the hospital 24/7. And yes, Rhett does help but it's not done MY way when he does it =). So off to clean, do laundry, and spend a little extra time with Bennett. He has such a hard time when his sissy isn't around. =(
Cute pic of Jordan and Bennett in their Christmas PJ's! I know it's already March, but it's better late than never! I love the Dora and Diego together. Best buds!
Here's a pic of us (Rhett's face, Jordan and Bennett!) at the zoo around Christmas time. My old boss Gary gave us tickets to the zoo and to the train/tram thing that goes around the zoo. Thanks Gary! We had a great time!
And this movie is a really cute one of Jordan, my brother Travis, and his daughter Alexis. They live in Germany and we were so lucky they were able to come spend Christmas with us all! Trav is being deployed again in April =(. We'll miss him lots. This video just shows how much Jordan likes to laugh, and also when she says no, she means it!
And this movie is a really cute one of Jordan, my brother Travis, and his daughter Alexis. They live in Germany and we were so lucky they were able to come spend Christmas with us all! Trav is being deployed again in April =(. We'll miss him lots. This video just shows how much Jordan likes to laugh, and also when she says no, she means it!
Wednesday, February 27, 2008
Update
Thanks for all your comments and support for Jordan. We're so lucky to have such great friends and family.
Jordan came home yesterday!! Yeah! We're really not sure exactly what was causing the initial symptoms, like her turning gray/blue. After being in the hospital for a couple days she came up with a really bad cough and they said it was bronchiolitis. But it's strange that she wasn't a bit congested before she got there. I'm sure she was infected before she got there though because I think it take a week or 2 to show symptoms once you've caught the virus. So, because it was a virus, antibiotics don't do anything to help. So they do what's called CPT's which is basically pounding on her back and chest with an inflated oxygen mask (it sounds strange but it works so well and doesn't hurt at all...). I guess the sound waves from the pounding breaks up all the gunk in her lungs so she can cough it up easier. Along with that they suctioned out her nose every couple of hours with the sucker machine attached to their wall. I'm not sure what the name of it is but it works! And probably once a day they used this little mini tube to "deep suction" her, which goes up her nose, down the back of her throat, and down close to her lungs to suction out what she might be having a hard time coughing up. So now that we're at home she's drinking pretty good but it coughing like crazy. But of course she's TONS better than she was.
Jordan is suppose to have her follow up testing done on her back in about 1-3 weeks. They have to schedule a time when they can use anastesea (I can not spell that!) to help her be mellow while they do the scans because she'll scream and flail the whole time if they don't. I'll keep you all posted on when that test will be. I'll also try to post some pics next time too.
Jordan came home yesterday!! Yeah! We're really not sure exactly what was causing the initial symptoms, like her turning gray/blue. After being in the hospital for a couple days she came up with a really bad cough and they said it was bronchiolitis. But it's strange that she wasn't a bit congested before she got there. I'm sure she was infected before she got there though because I think it take a week or 2 to show symptoms once you've caught the virus. So, because it was a virus, antibiotics don't do anything to help. So they do what's called CPT's which is basically pounding on her back and chest with an inflated oxygen mask (it sounds strange but it works so well and doesn't hurt at all...). I guess the sound waves from the pounding breaks up all the gunk in her lungs so she can cough it up easier. Along with that they suctioned out her nose every couple of hours with the sucker machine attached to their wall. I'm not sure what the name of it is but it works! And probably once a day they used this little mini tube to "deep suction" her, which goes up her nose, down the back of her throat, and down close to her lungs to suction out what she might be having a hard time coughing up. So now that we're at home she's drinking pretty good but it coughing like crazy. But of course she's TONS better than she was.
Jordan is suppose to have her follow up testing done on her back in about 1-3 weeks. They have to schedule a time when they can use anastesea (I can not spell that!) to help her be mellow while they do the scans because she'll scream and flail the whole time if they don't. I'll keep you all posted on when that test will be. I'll also try to post some pics next time too.
Thursday, February 21, 2008
Jordan
I know it's been FOREVER since I've blogged. I am SO sorry! I'm hearing all about it though so i'll try not to let it happen again. This will be a fairly short entry so i'll update you all on other things going on when I can...
Jordan is in the hospital again. We took her in Tuesday night. She woke up with a fairly high fever, gray/blue lips and face, shaking really bad and breathing really shallow and really quickly. These are the same symptoms she had when she had a kidney infection about a year and a half ago so I thought that's what it was. After waiting in the ER forever (you all know how fun that is in the middle of flu season!) they brought us back to have her vitals taken and to explain to the Dr. why we came in and he pretty much immediately told us that he wanted to keep her for observation. All her results have come back negative so far which is good but she's still extremely agitated almost constantly, won't let me lay her down (she screams like she's in pain when laid down), and just really isn't herself. She's eating okay but she refuses to drink anything. The fevers have now stopped but with her drinking NOTHING in almost 2 days (she is on IV fluid though...) and with how cranky and not herself she's being they're going to keep observing her. The hospital we took her to is Banner Desert which is the closest one to our home. I picked this one to take her to this time because she was blue, not breathing, and I thought we'd be home the next day. But- this hospital is not her "neuro" hospital. That one is out in Phoenix. Actually, this hospital doesn't even have neurosurgeons in it at all. So, the Dr. decided that if she continues to be agitated tomorrow they'll probably send her to the other hospital to get some tests done for her shunt and other neuro stuff.
Those of you that I talk to at church might remember me mentioning that we've been waiting on results of Jordan's MRI she had of her spinal column that was done in the beginning of Feb. We had heard a couple weeks ago that Jordan's neurosurgeon saw the MRI and wanted more tests done. They said something about how he wasn't clear on what he was looking at, or something to that effect. Now, since her neurosurgeon is one of the best in the world (I know, we're really lucky!), him not understanding what the test was showing, it's not really reassuring. I got a call Wednesday from his nurse saying that they wanted us to get those follow up tests done that day. But- we're in the hospital and can't! We're in the OTHER hospital- the one that does nothing with Neuro stuff. So I asked her exactly what they saw on the scans. Why do they need more tests?! So the nurse explained to me that they saw cysts on Jordan's spine. She said that it looks like a string of pearls of all different sizes pretty much the full length of her spine. They don't know why they're there, what exactly they are, if they're attached to her spinal cord, causing discomfort, nothing. So that's why they're wanting to run more tests. What are these things?
So, I'll keep you all posted on what's going on as much as I can when I take my breaks from the hospital. Keep her in your prayers please =). We know she'll be okay but the more help the better.
Jordan is in the hospital again. We took her in Tuesday night. She woke up with a fairly high fever, gray/blue lips and face, shaking really bad and breathing really shallow and really quickly. These are the same symptoms she had when she had a kidney infection about a year and a half ago so I thought that's what it was. After waiting in the ER forever (you all know how fun that is in the middle of flu season!) they brought us back to have her vitals taken and to explain to the Dr. why we came in and he pretty much immediately told us that he wanted to keep her for observation. All her results have come back negative so far which is good but she's still extremely agitated almost constantly, won't let me lay her down (she screams like she's in pain when laid down), and just really isn't herself. She's eating okay but she refuses to drink anything. The fevers have now stopped but with her drinking NOTHING in almost 2 days (she is on IV fluid though...) and with how cranky and not herself she's being they're going to keep observing her. The hospital we took her to is Banner Desert which is the closest one to our home. I picked this one to take her to this time because she was blue, not breathing, and I thought we'd be home the next day. But- this hospital is not her "neuro" hospital. That one is out in Phoenix. Actually, this hospital doesn't even have neurosurgeons in it at all. So, the Dr. decided that if she continues to be agitated tomorrow they'll probably send her to the other hospital to get some tests done for her shunt and other neuro stuff.
Those of you that I talk to at church might remember me mentioning that we've been waiting on results of Jordan's MRI she had of her spinal column that was done in the beginning of Feb. We had heard a couple weeks ago that Jordan's neurosurgeon saw the MRI and wanted more tests done. They said something about how he wasn't clear on what he was looking at, or something to that effect. Now, since her neurosurgeon is one of the best in the world (I know, we're really lucky!), him not understanding what the test was showing, it's not really reassuring. I got a call Wednesday from his nurse saying that they wanted us to get those follow up tests done that day. But- we're in the hospital and can't! We're in the OTHER hospital- the one that does nothing with Neuro stuff. So I asked her exactly what they saw on the scans. Why do they need more tests?! So the nurse explained to me that they saw cysts on Jordan's spine. She said that it looks like a string of pearls of all different sizes pretty much the full length of her spine. They don't know why they're there, what exactly they are, if they're attached to her spinal cord, causing discomfort, nothing. So that's why they're wanting to run more tests. What are these things?
So, I'll keep you all posted on what's going on as much as I can when I take my breaks from the hospital. Keep her in your prayers please =). We know she'll be okay but the more help the better.
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