I have a lot of anxiety about Kaitlyn's 6 month check up tomorrow. Last year in Oct, we found out she was losing some sensation during her urodynamics test. Neuro thought it could be due to her spinal cord retethering, so they scheduled us for an MRI a few weeks later, on Halloween. That was the day my world stopped again, you can only guess it's bad news when the Dr asks you to step into another room, while the nurse holds the baby. One would guess correctly, we did get bad news. Her spinal cord was retethered which meant another surgery and soon.
We scheduled it for early December, and then stressed over the next several weeks about another week long hospital stay, another 6 to 8 hour surgery, possible NICU, you name it, everything went through our heads. I felt horrible about having to leave the two older girls again but they took it as well as possible.
Every little thing she does or doesn't do now makes me wonder if she's retethered. She seemed to be falling down a lot more over the last couple weeks, but now not quite as much, but I can't recall if it is more than prior to us noticing. :( I hate this feeling. I feel like things have been going great, but now I am waiting for the other shoe to drop. I hope it's all in my head.
I will be back to update tomorrow evening once we get back. Please keep us in your thoughts and prayers.
Showing posts with label tethered cord. Show all posts
Showing posts with label tethered cord. Show all posts
Tuesday, October 9, 2012
Thursday, December 15, 2011
A Week in Photos
It's taking me longer than I thought to write down a post about surgery week, so for now a few pictures from from the week for Miss K.
**There are photos of her incision further down the page, just a warning in case you're a bit squeamish, but they aren't that bad.
**There are photos of her incision further down the page, just a warning in case you're a bit squeamish, but they aren't that bad.
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| The night before surgery, very tired |
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| Lipoma, before surgery |
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| Lipoma, scarring from 1st surgery |
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| Lipoma, also sacral pit |
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| 2 Days after Surgery |
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| Still wanted to play with daddy's phone |
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| Balloon from SBA of AL |
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| Day 3- looking more alert |
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| Incision & stitches, goes up most of her back now |
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| Stitches to the right are from the drain |
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| Side view, a lot more fat was taken out this time |
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| Sitting upright in bed, trying to get her balloon |
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| Sitting with daddy! Happy to be held :) |
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| Home! Loving her new elephant pillow. |
Thursday, November 3, 2011
MRI Update
I am so sad, we found out on Monday that Kaitlyn has to have another surgery in December.
About 2 weeks ago, we took Kaitlyn for her 1st Spina Bifida Clinic. We were set to see her Neurosurgeon, Urologist, Ortho & Rehab Med Drs plus have x-ray's, renal ultrasound and urodynamics testing done. We did our testing in the morning and saw the drs after lunch. Anyway, we saw the uro first because he did the urodynamics test, which basically was our 1st step going downhill. This test should have been very uncomfortable for her, but she really just laid there and played with the nurse the whole time and laughed. The first time she had it done at about 6 weeks or so she screamed and screamed. So turns out, he believes she is losing sensitivity and that her bladder is not emptying completely. So he put her on Ditropan to help the bladder some and told us to start cathing her again. So we are doing that about every 4 hours and she definitely needed it, because she will have a pretty wet diaper, and still we get urine after, even if shes not drinking a lot.
We did not get to see our neuro because he had emergency surgery but he popped in and said that he wanted to order a MRI because it could be possible she is retethering. OY, not really what I wanted to hear. We went ahead and saw the ortho and rehab med drs, which that part I thought went well. We got hooked up with a service here in AL, that helps pay for equipment (braces, wheel chairs) etc, and mostly it'll be no out of pocket costs for us, which is awesome. The ortho/rehab drs both suggested she get more PT and some OT because they think it would help her in walking, as she isn't fully walking yet. She can cruise furniture, push toys across room, but not much else. It was sounding so good that she would probably be walking by the time she's 2. That was like music to my ears.
Fast forward to her MRI this past Monday. We got in to the see the NS and he was like come back here with me, that was the 1st sign I knew something was wrong because he normally talks to us in the pt rooms, and the nurse took K for a bit. So he pulls up her MRI results and is showing us the various things that had changed since her last MRI (about a yr ago) and several things were different. First her cerebellum was being pulled down, which means her spinal cord has retethered. She also has some spinal fluid pooling at the bottom of her spine, near her lipoma (Cyst) area and on top of all that, she has a vertebrae that is growing in almost a J shape... :/ her spine is straight, then it has a curve, down towards the bottom and then straight again.... :/ They didn't notice this prior because she was so small and because it hadn't fully formed, is what he said.
So she needs surgery to detether her cord again, he's also going to remove more of the fatty tissue from the lipoma this time, she'll still have some but it'll not be as large. The incision is probably going to be longer and the surgery sounds more complicated this time around. He can't give exact things he'll have to do until he gets in and sees the spinal cord and how bad the nerves are around it and if they grew in etc. If so, there is a chance she will lose more function in her legs/bladder depending on the nerve damage and/or if he has to cut any. He of course is going to try to avoid that at all cost.
He also ordered 2 CT scans on the Monday of her Pre-Op visit, one on her head and one of the spine. The head one is to double check the spinal fluid/cerebellum and make sure there isn't any spinal fluid building there, because if could be Chiari Malformation, which could require a shunt to drain the fluid, which is another surgery. Praying it's not, he doesn't think it is off hand, since her head size hasn't changed more than normal growth.
Surgery is slated for Dec 6, she'll have to be in the hospital for at least 5 days on her stomach to heal and make sure there are no problems etc. Please just pray for us and/or send lots of positive thoughts our way. I just don't know what to do, I thought she was doing so well, trying to walk more etc, but now I feel like it's all come to a stop. If there is nerve damage and he has to cut any nerves, she may never walk. I know there could be worse things, but I was so hopeful after our visit with the ortho dr 2 weeks ago, now I just don't know.
* sorry if this is repeat for some of you reading, but I am trying to keep track of everything in 1 spot for future information.
About 2 weeks ago, we took Kaitlyn for her 1st Spina Bifida Clinic. We were set to see her Neurosurgeon, Urologist, Ortho & Rehab Med Drs plus have x-ray's, renal ultrasound and urodynamics testing done. We did our testing in the morning and saw the drs after lunch. Anyway, we saw the uro first because he did the urodynamics test, which basically was our 1st step going downhill. This test should have been very uncomfortable for her, but she really just laid there and played with the nurse the whole time and laughed. The first time she had it done at about 6 weeks or so she screamed and screamed. So turns out, he believes she is losing sensitivity and that her bladder is not emptying completely. So he put her on Ditropan to help the bladder some and told us to start cathing her again. So we are doing that about every 4 hours and she definitely needed it, because she will have a pretty wet diaper, and still we get urine after, even if shes not drinking a lot.
We did not get to see our neuro because he had emergency surgery but he popped in and said that he wanted to order a MRI because it could be possible she is retethering. OY, not really what I wanted to hear. We went ahead and saw the ortho and rehab med drs, which that part I thought went well. We got hooked up with a service here in AL, that helps pay for equipment (braces, wheel chairs) etc, and mostly it'll be no out of pocket costs for us, which is awesome. The ortho/rehab drs both suggested she get more PT and some OT because they think it would help her in walking, as she isn't fully walking yet. She can cruise furniture, push toys across room, but not much else. It was sounding so good that she would probably be walking by the time she's 2. That was like music to my ears.
Fast forward to her MRI this past Monday. We got in to the see the NS and he was like come back here with me, that was the 1st sign I knew something was wrong because he normally talks to us in the pt rooms, and the nurse took K for a bit. So he pulls up her MRI results and is showing us the various things that had changed since her last MRI (about a yr ago) and several things were different. First her cerebellum was being pulled down, which means her spinal cord has retethered. She also has some spinal fluid pooling at the bottom of her spine, near her lipoma (Cyst) area and on top of all that, she has a vertebrae that is growing in almost a J shape... :/ her spine is straight, then it has a curve, down towards the bottom and then straight again.... :/ They didn't notice this prior because she was so small and because it hadn't fully formed, is what he said.
So she needs surgery to detether her cord again, he's also going to remove more of the fatty tissue from the lipoma this time, she'll still have some but it'll not be as large. The incision is probably going to be longer and the surgery sounds more complicated this time around. He can't give exact things he'll have to do until he gets in and sees the spinal cord and how bad the nerves are around it and if they grew in etc. If so, there is a chance she will lose more function in her legs/bladder depending on the nerve damage and/or if he has to cut any. He of course is going to try to avoid that at all cost.
He also ordered 2 CT scans on the Monday of her Pre-Op visit, one on her head and one of the spine. The head one is to double check the spinal fluid/cerebellum and make sure there isn't any spinal fluid building there, because if could be Chiari Malformation, which could require a shunt to drain the fluid, which is another surgery. Praying it's not, he doesn't think it is off hand, since her head size hasn't changed more than normal growth.
Surgery is slated for Dec 6, she'll have to be in the hospital for at least 5 days on her stomach to heal and make sure there are no problems etc. Please just pray for us and/or send lots of positive thoughts our way. I just don't know what to do, I thought she was doing so well, trying to walk more etc, but now I feel like it's all come to a stop. If there is nerve damage and he has to cut any nerves, she may never walk. I know there could be worse things, but I was so hopeful after our visit with the ortho dr 2 weeks ago, now I just don't know.
* sorry if this is repeat for some of you reading, but I am trying to keep track of everything in 1 spot for future information.
Tuesday, October 19, 2010
MRI and Ultrasound Update
Yesterday we had to go UAB for Kaitlyn's MRI and Renal Ultrasound, of course we had to be there bright and early, 7:45 am, which meant getting up before the sun! Not so much fun I tell ya. Not only that but we had to wake her up before 2 for a final feeding, then between 2 and 6 she could have clear liquids, so we again woke her at 5 for some juice. Poor kid, she would have actually slept through the night had we not HAD to wake her. Oh well.
Once we arrived, we went for check in and then for the MRI but they had the ultrasound tech ready, so we did that first. She did so awesome, just laid there and let her do her job :) I thought for sure by 8 she would be screaming her head off for food. Nope! So after the ultrasound was done we headed for the MRI, took awhile to get ready but the worst part was K getting the IV. That was the only time she cried. We were done with that within an hour or so, then it was back to the clinic to wait for the doctor consultation and test results.
Our neurosurgeon came in and asked how things were going etc and told us that everything looked fine on the MRI, this was just a baseline for future reference since her surgery. The only thing that could be "somewhat" troubling is that children that have tethered cords have a 5-10% chance of re-tethering and because of her lipoma, her chances are in the higher range. There isn't really anything we can do to prevent it, so we'll just keep an eye out in case things start to happen that weren't before. If it does happen and it's not caught, it could cause nerve damage. However we're not thinking about it right now. I know there are still a lot of possibilities that could happen, but I can't dwell on it.
Next came our urologist, pretty much same deal. The renal ultrasound went fine, he wasn't to concerned over anything and again we're just keeping an eye on things if something changes. He too agrees we do not need to come back for 6 months unless something comes up. So as of right now we are set to return on April 18, 2011!
I was glad to get good reports yesterday as I had not been sleeping well the last couple nights. Everything is back to "normal" today and look forward to some doctor free months ahead!
Once we arrived, we went for check in and then for the MRI but they had the ultrasound tech ready, so we did that first. She did so awesome, just laid there and let her do her job :) I thought for sure by 8 she would be screaming her head off for food. Nope! So after the ultrasound was done we headed for the MRI, took awhile to get ready but the worst part was K getting the IV. That was the only time she cried. We were done with that within an hour or so, then it was back to the clinic to wait for the doctor consultation and test results.
Our neurosurgeon came in and asked how things were going etc and told us that everything looked fine on the MRI, this was just a baseline for future reference since her surgery. The only thing that could be "somewhat" troubling is that children that have tethered cords have a 5-10% chance of re-tethering and because of her lipoma, her chances are in the higher range. There isn't really anything we can do to prevent it, so we'll just keep an eye out in case things start to happen that weren't before. If it does happen and it's not caught, it could cause nerve damage. However we're not thinking about it right now. I know there are still a lot of possibilities that could happen, but I can't dwell on it.
Next came our urologist, pretty much same deal. The renal ultrasound went fine, he wasn't to concerned over anything and again we're just keeping an eye on things if something changes. He too agrees we do not need to come back for 6 months unless something comes up. So as of right now we are set to return on April 18, 2011!
I was glad to get good reports yesterday as I had not been sleeping well the last couple nights. Everything is back to "normal" today and look forward to some doctor free months ahead!
Tuesday, August 10, 2010
UAB Surgery Update
Copied from other blog
June 27, 2010
I just realized I never updated my blog about K's surgery this past week. Sorry about that, was just to busy emailing updates, posting on facebook and HMMT to get here too. So anyway, K's update.
We arrived in Birmingham on Monday morning for K's pre-op appointment with Dr. Wellons, which led to a series of other stops here at the hospital, pre-admissions, and lab work being done. First thing we found out was that K's surgery had been moved to Wednesday morning at 7:30 am rather than Tuesday due to an emergency case coming in. It was a little frustrating but I am glad we did not have it Tues afternoon, because it would have made for a very very long day. So bright and early Wednesday morning we were here at Children's Hospital (early as in 5 am!) and thankfully was one of the 1st called back. Once we got back to the pre surgery room, we spoke with the drs and such and answered questions about K etc and then they took her off to get drugged up. Surgery was expected to start soon after but it was 8:30 before it got started, and they told us about 3 to 4 hours. True to their word, right about 12:30 we found out the surgery was complete and was successful. The staff was great on updating us every hour to hour and half on surgery and K's status.
She had to spend a couple hours in recovery while we waited on a room and bed to be available and it wasn't until about 4pm we got to the room and they finally brought her in. It was so great to see her, I was really worried she would be hooked up to all these things but she only had her IV in. The worst part not being able to hold her. Dr Wellons came and talked to us right before we got the room and told us how everything went and thankfully he did not have to detach any nerves during the detethering. She still had movement in her hips, knees and ankles as before. He did have to leave a smaller version of the "hump" aka cyst so that the nerves would remain intact and everything would heal properly. So she's had to be flat since surgery, on her stomach or on her side with no one picking her up. We've had to feed her while she's on her side and change her diaper with her on her stomach. We've gotten used to that, but it still sucks to not pick your baby up when all you want to do is comfort her.
Overall she's doing well post-op with the exception of bladder control. She's unable to really urinate right now, could be the nerves are just irritated and swollen or it could be a side affect that she has to live with. I am hoping for the first and hope it resumes normal functions soon. Right now she has to be cathed every 4 hours and boy are the nurses having a hard time. She's so small and swollen it makes it quite difficult and to think we are going to have to do this at home, sigh. I hope it's just short term, so please say a quick prayer on that.
We are waiting to find out if we are able to leave tomorrow (Monday) to come home. Dr Wellons wants us to pick her up and hold her as we do at home to check for spinal fluid leaks in her incision area. So far so good on that, so if all goes well we'll be able to return home. I am ready, the girls are ready for us to be home as well. I'll try to update with more info later this week after we get home and settled.
Thank you for all the well wishes, thoughts and prayers for baby K and our family.
June 27, 2010
UAB Surgery Update
We arrived in Birmingham on Monday morning for K's pre-op appointment with Dr. Wellons, which led to a series of other stops here at the hospital, pre-admissions, and lab work being done. First thing we found out was that K's surgery had been moved to Wednesday morning at 7:30 am rather than Tuesday due to an emergency case coming in. It was a little frustrating but I am glad we did not have it Tues afternoon, because it would have made for a very very long day. So bright and early Wednesday morning we were here at Children's Hospital (early as in 5 am!) and thankfully was one of the 1st called back. Once we got back to the pre surgery room, we spoke with the drs and such and answered questions about K etc and then they took her off to get drugged up. Surgery was expected to start soon after but it was 8:30 before it got started, and they told us about 3 to 4 hours. True to their word, right about 12:30 we found out the surgery was complete and was successful. The staff was great on updating us every hour to hour and half on surgery and K's status.
She had to spend a couple hours in recovery while we waited on a room and bed to be available and it wasn't until about 4pm we got to the room and they finally brought her in. It was so great to see her, I was really worried she would be hooked up to all these things but she only had her IV in. The worst part not being able to hold her. Dr Wellons came and talked to us right before we got the room and told us how everything went and thankfully he did not have to detach any nerves during the detethering. She still had movement in her hips, knees and ankles as before. He did have to leave a smaller version of the "hump" aka cyst so that the nerves would remain intact and everything would heal properly. So she's had to be flat since surgery, on her stomach or on her side with no one picking her up. We've had to feed her while she's on her side and change her diaper with her on her stomach. We've gotten used to that, but it still sucks to not pick your baby up when all you want to do is comfort her.
Overall she's doing well post-op with the exception of bladder control. She's unable to really urinate right now, could be the nerves are just irritated and swollen or it could be a side affect that she has to live with. I am hoping for the first and hope it resumes normal functions soon. Right now she has to be cathed every 4 hours and boy are the nurses having a hard time. She's so small and swollen it makes it quite difficult and to think we are going to have to do this at home, sigh. I hope it's just short term, so please say a quick prayer on that.
We are waiting to find out if we are able to leave tomorrow (Monday) to come home. Dr Wellons wants us to pick her up and hold her as we do at home to check for spinal fluid leaks in her incision area. So far so good on that, so if all goes well we'll be able to return home. I am ready, the girls are ready for us to be home as well. I'll try to update with more info later this week after we get home and settled.
Thank you for all the well wishes, thoughts and prayers for baby K and our family.
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