It's been a while since I've blogged, and even longer since I've updated about my daughter. I have no excuse except that I've been busy....and when I've had free time I haven't been in the mood to sit down and write. Last week the kids were on vacation all week; this week I'm trying to catch up on any training I missed. I'm also in the throes of helping to plan my school's foundation's annual silent auction/gala, which is what I'm doing most of the time when I'm on the computer.
My daughter, A, is doing great! She broke her neck in mid-October; you can read all about that here. I am happy to say that after only 4 1/2 months, she is healed! She had on one of those awful halos for 2 months. That was the worst; in addition to having the halo literally screwed into her head in 6 different places, it was attached to a vest that could never be removed. We had to have special clothing adapted to fit over it, and couldn't give her a bath (she had sponge baths during this time). In mid-December, she graduated to a hard neck collar. Getting the halo off was awful---very bloody and painful for her--but well worth it. I was able to give her a bath for the first time in months---words can't express the joy I felt in pouring water all over her. She was able to wear regular clothes again. She had that one for a month, and then transitioned to a soft neck collar. This soft collar just came off on Monday, two days ago.
The orthopedic surgeon is thrilled with her. She has healed beautifully, and while she has lost some range of motion due to the fusion he did, she is still able to turn her neck and nod her head. New bone is growing, and he expects lots more to grow. She is still limited on some activities---for example, he doesn't want her falling from a height, with velocity, so she can't go on playground equipment, etc. And things like roller coasters may always be off limits, which is a huge bummer because she is a roller coaster maniac, like me and her brother (with roller coasters, he's not concerned about the fusion breaking, but more about putting unneeded pressure on other parts of her spine). It's all good though. I know what a gift we were given. Where the break was in her neck (C1/C2) is where people become quadripalegic. Her spinal cord was never touched. I am eternally grateful, and know she has angels looking after her.
Something that I don't think I've written about are the GI issues A has been having. This started back last spring, probably around April or May. Suddenly she started having very loose stools, and was unable to control them, resulting in lots of accidents soiling her pants. At first I got mad at her (she'd been potty trained for a year at that point) but then I realized she couldn't help it. I tried different diet modifications (completely dairy-free; cutting out grease/oil) but still no effect. My step-mother recommended a pro-biotic drink/yogurt, but that didn't help. We ended up seeing a GI doctor last summer, and after lots of blood and stool sample tests, she determined that she couldn't see a cause for the loose stools. She DID see a slight infection, and thought that an anti-biotic would clear it up, but after a round of medications A still had the same loose stools. The new plan was to put her on Immodium to bind her up (which worked) and to schedule her for an endoscopy/colonoscopy to see what was going on in her stomach and intestines.
The procedure was scheduled for November, which I dreaded, but then we had to cancel it because of the broken neck. In the meantime, I had questions about scheduling, etc and tried to contact the GI doctor, but never heard back from her. I got really frustrated with not only her, but her office staff (schedulers and nurses) who I found lying to me in subsequent emails....I felt that A's care was slipping through the cracks. So I requested a different doctor, and was able to get a referral to see the same GI doctor who we used to see. This particular doctor was the one who scoped A 3 separate times, and was the one who eventually removed her feeding tube in 2010. I tried to see her last summer, in fact, but at that time she wasn't taking new patients. I lucked out in getting to see her now. (For the record, this is the 4th or 5th doctor that we've "fired" and gotten a new one. I am not a difficult patient, but I am A's best advocate, and I won't tolerate sub-par health care, especially when we live in a city with some of the the best doctors and children's hospital available).
In the meantime, a few weeks ago A had a bad cold, and I ended up taking her to the pediatrician to get checked out because I wanted to make sure her lungs were clear. We saw the nurse practitioner, and briefly talked about the GI issues that were going on (it came up because when she asked what medications A was taking, I had to respond with "Immodium".) She asked if we had tried probiotics before. I replied that we had tried probiotic drinks the previous summer, but they didn't help. She recommended an actual probiotic powder. I decided to try it, thinking it couldn't hurt. I started her on it last week (I waited until last week because she was off of school for the week; in order to know if the probiotic worked I needed to take her off the Immodium, and I wanted to have her home in case the loose stools happened again. What a nightmare that would be for the school staff).
Well, it's now been 10 days, and she's been fine. 10 days of the probiotic (I just put a teaspoon of the powder on her waffle or in her oatmeal every morning) and 10 days of no Immodium. And 10 days of no accidents, just nice solid poops every days.
Wow.
This morning was the GI appointment with her old doctor. She hadn't seen A in 2 1/2 years, since she removed the g-tube, and it was great to see her. I explained all that happened (she had already read the chart and was up-to-speed) and she agreed with me that there is no reason to scope her right now, as long as things seem good! A main reason for scoping would be to rule out celiac disease, but since she's already scoped her 3 times, plus the blood tests were negative, she knew she didn't have celiac. She said sometimes our gut environment just changes. So, the new plan is to keep her on the probiotic, and if she ends up with the loose stools again to put her back on the Immodium, email the GI doctor and we'll make a plan from there.
So, lots of good updates! A healed neck and hopefully (and I really hope I'm not jinxing us by writing about this) a healed stomach. Additionally, she's going great in kindergarten, is reading beautifully, has made friends at school, and remains a delight and the light of my life.
Showing posts with label spinal cord. Show all posts
Showing posts with label spinal cord. Show all posts
February 27, 2013
October 27, 2012
Home at Last
Yesterday, after a full 2 weeks in the hospital, we were able to bring A home. (In case you missed it, you can read the story of how she broke her neck here: part 1 and part 2).
We left the ICU a week ago, and spent the following 7 days in the ortho rehab unit at Children's Hospital. She was very weak, as she had just come off a week of a medicated coma, two surgeries, and was recovering from pneumonia. She received 3 therapy sessions a day (physical, occupational, and speech). All three were hard at first, but as the week went on she got stronger and stronger. In physical and occupational therapies, she practiced walking with a walker and was able to sit on a bench upright, unsupported, even by her own arms. Having a halo on her head makes her top-heavy and off-balance, a challenge for anyone but especially for A, as she already has a balance disorder. Speech therapy started out rough, as her speech was very, very slurred and inarticulate (mainly a side effect of the breathing tube that had been down her throat for a week) but it got better and better. Finally, she was cleared from the therapists to go home, and she got home yesterday afternoon.
Now we are adjusting to life at home. Here are some of the things we have to change and/or get used to:
I have never, nor will I ever, complain about what we are going through. We can get through a few months of this for the trade-off of not having to deal with this for a lifetime.
We left the ICU a week ago, and spent the following 7 days in the ortho rehab unit at Children's Hospital. She was very weak, as she had just come off a week of a medicated coma, two surgeries, and was recovering from pneumonia. She received 3 therapy sessions a day (physical, occupational, and speech). All three were hard at first, but as the week went on she got stronger and stronger. In physical and occupational therapies, she practiced walking with a walker and was able to sit on a bench upright, unsupported, even by her own arms. Having a halo on her head makes her top-heavy and off-balance, a challenge for anyone but especially for A, as she already has a balance disorder. Speech therapy started out rough, as her speech was very, very slurred and inarticulate (mainly a side effect of the breathing tube that had been down her throat for a week) but it got better and better. Finally, she was cleared from the therapists to go home, and she got home yesterday afternoon.
Now we are adjusting to life at home. Here are some of the things we have to change and/or get used to:
- She can't have a shower, or even a regular bath. The halo is attached to a fleece-lined vest, which anchors it in place and doesn't allow her neck to move while it heals (you can kind of get a sense of what it look like here, although hers looks a bit different). Because the vest is fleece-lined, and the vest is never, ever removed, it can't get wet. So we have to give her sponge baths. Additionally, we can't wash her hair easily. Websites suggest laying her on a counter with her head in a sink, but we are going to order a waterless shampoo, just like they used at the hospital.
- Because she can't move her neck even a millimeter in any direction, she is always looking straight ahead. This means adjustments on the couch, in bed, and at the kitchen table with different pillow combinations to make her feel comfortable. We are still playing with this, trying to find out how best to make her comfortable.
- She now has a walker to help her walk at home, and a wheelchair that we will use when we go out, and when she returns to school in a few week. I am getting acclimated on how to use the wheelchair, especially on how to take it apart and put it back together (which I have to do to get it in and out of the car). I need to be aware of where I park, and where ramps are to get her up on the sidewalk.
- She literally needed a new wardrobe. The halo is so big that nothing can go over her head; everything needs to be either buttoned or zipped around the front or back. However, even those clothes need to be a much bigger size in order to accommodate the halo's rods. She is normally a size 6 in shirts, but now we have her in size 8-10 hoodies, etc, with large tank tops underneath. We are still figuring this one out. Unfortunately, I don't sew, but I think I will be cutting the shoulder straps on the tank tops, slipping the shirt on her from the feet up (they are big enough) and then safety pinning the shoulder straps back together once they are on. This way she'll have a tank top underneath and a jacket on top. She even needed new pajamas. Luckily, she can still wear her old shorts and jeans. And this is only for a few months; when she gets the halo off in mid-January, we can go back to her regular adorable wardrobe.
- We have to clean the 6 pins (which are drilled into her skull--one above each eyebrow and 2 above each ear) twice daily with sterile q-tips and hydrogen peroxide. After caring for her tracheostomy and feeding tube for 4 years (these were both removed over 2 years ago), this is so simple!
I have never, nor will I ever, complain about what we are going through. We can get through a few months of this for the trade-off of not having to deal with this for a lifetime.
October 19, 2012
Grateful Update on my Daughter
Just a quick update on my daughter. (If you missed what happened to A, please click here) It's been exactly a week since she broke her neck and went to the ER, and was later admitted. She's been in ICU ever since. Last Saturday she had surgery to put on the halo that she will wear for the next 3 months or so. I've had almost a week to get used to looking at my 6 year old with a metal ring literally drilled into her skull. It's awful looking, but it will serve the purpose of keeping her neck still while it heals.
On Tuesday, she had surgery to fuse her C1 and C2 vertebrate. Her spine surgery was one of the most brutal afternoons of my life. The spine surgeon had told us it would take 3-4 hours. He didn't get us until 5 1/2 hours later. That last 1 1/2 hour was horrific for me....I was panicking, picturing everything that could have gone wrong (a small risk of stroke, a small risk of paralysis since he was working so close to the spinal cord, etc). It turns out that they got a late start to the surgery, mainly because they had a hard time getting an arterial line in her. The doctor had told someone to tell us, but no one did. We could have been spared that agony, but in the end it made hearing that the surgery was a complete success that much sweeter.
All week she's been in the medicated coma, on the ventilator with the breathing tube down her throat. They would have removed it the day after surgery, but she had developed pneumonia, and wanted to wait until she had recovered from that. Today was the day. Today, exactly one week after being admitted to the hospital, they finally took A off the sedatives, woke her up and removed the breathing tube. It was awesome finally seeing her awake, although she was quite groggy and confused. I told her what happened...how she had broken her neck in gymnastics, that usually a cast would go on a broken bone but since she can't have a cast on her neck there is the halo. I showed her photographs (given to me by the Child Life counselor) of other kids wearing halos. Finally, I took her picture with an iPad and showed her what she looks like. She seemed ok with it all, amazingly enough. I told her she would have it for 3 months, that in January it would come off. And I reminded her that she used to have a tracheostomy and a feeding tube, and both went bye-bye, and this will go bye-bye soon too. I think she got it. Of course, she has yet to LIVE with it...stand, walk, eat, write, etc....but so far, so good.
I am incredibly grateful. She is going to be ok. This could have been catastrophic...she could have easily been paralyzed. She is not. She will make a full recovery. This injury was bound to happen to her, given her anatomy (of which we had no clue before) and while I hate that she has to go through this, it's happened in the best possible situation: It happened at gymnastics, on a padded floor, with me close by. It didn't happen at school, in Adapted PE where she is learning how to jump. It didn't happen at Disneyland, where we were a few months ago and rode the Thunder Mountain roller coaster 7 times, which must have jostled her neck all over. It didn't happen when we were out of town. It didn't happen when my husband was out of town, or me, for that matter (we were supposed to go to Palm Springs the weekend; last weekend I was in Portland for the half marathon). My half-Ironman is over, nothing major is happening at school or at work. It happened at the best possible place, and the best possible time. God was looking out for her.
I have been so overwhelmed by the support I've received. So many friends and family have reached out. The day of her spine surgery I think half the world was praying for her. My Facebook page exploded, I'm getting tons of cards in the mail, emails, texts, and phone calls. Friends have been bringing us dinner every night. Friends have been helping to care for my son. Friends have been visiting at the hospital. Even my online community, most of whom I've never met, have been caring and supportive. I'm humbled and grateful and so appreciative.
I will update when I can. The next step is to leave ICU for the rehab floor...and start walking!
On Tuesday, she had surgery to fuse her C1 and C2 vertebrate. Her spine surgery was one of the most brutal afternoons of my life. The spine surgeon had told us it would take 3-4 hours. He didn't get us until 5 1/2 hours later. That last 1 1/2 hour was horrific for me....I was panicking, picturing everything that could have gone wrong (a small risk of stroke, a small risk of paralysis since he was working so close to the spinal cord, etc). It turns out that they got a late start to the surgery, mainly because they had a hard time getting an arterial line in her. The doctor had told someone to tell us, but no one did. We could have been spared that agony, but in the end it made hearing that the surgery was a complete success that much sweeter.
All week she's been in the medicated coma, on the ventilator with the breathing tube down her throat. They would have removed it the day after surgery, but she had developed pneumonia, and wanted to wait until she had recovered from that. Today was the day. Today, exactly one week after being admitted to the hospital, they finally took A off the sedatives, woke her up and removed the breathing tube. It was awesome finally seeing her awake, although she was quite groggy and confused. I told her what happened...how she had broken her neck in gymnastics, that usually a cast would go on a broken bone but since she can't have a cast on her neck there is the halo. I showed her photographs (given to me by the Child Life counselor) of other kids wearing halos. Finally, I took her picture with an iPad and showed her what she looks like. She seemed ok with it all, amazingly enough. I told her she would have it for 3 months, that in January it would come off. And I reminded her that she used to have a tracheostomy and a feeding tube, and both went bye-bye, and this will go bye-bye soon too. I think she got it. Of course, she has yet to LIVE with it...stand, walk, eat, write, etc....but so far, so good.
I am incredibly grateful. She is going to be ok. This could have been catastrophic...she could have easily been paralyzed. She is not. She will make a full recovery. This injury was bound to happen to her, given her anatomy (of which we had no clue before) and while I hate that she has to go through this, it's happened in the best possible situation: It happened at gymnastics, on a padded floor, with me close by. It didn't happen at school, in Adapted PE where she is learning how to jump. It didn't happen at Disneyland, where we were a few months ago and rode the Thunder Mountain roller coaster 7 times, which must have jostled her neck all over. It didn't happen when we were out of town. It didn't happen when my husband was out of town, or me, for that matter (we were supposed to go to Palm Springs the weekend; last weekend I was in Portland for the half marathon). My half-Ironman is over, nothing major is happening at school or at work. It happened at the best possible place, and the best possible time. God was looking out for her.
I have been so overwhelmed by the support I've received. So many friends and family have reached out. The day of her spine surgery I think half the world was praying for her. My Facebook page exploded, I'm getting tons of cards in the mail, emails, texts, and phone calls. Friends have been bringing us dinner every night. Friends have been helping to care for my son. Friends have been visiting at the hospital. Even my online community, most of whom I've never met, have been caring and supportive. I'm humbled and grateful and so appreciative.
I will update when I can. The next step is to leave ICU for the rehab floor...and start walking!
October 15, 2012
Tested Yet Again
My 6 year old daughter, A, broke her neck on Friday.
Friday started out as a normal day. I took the kids to school, went to Target, went to Costco, and went to the gym (did my first real swim since SuperFrog, 40 laps). I picked D and A up from school, came home, then took them to gymnastics, like I do every Friday (well, A does gymnastics, D just brings his DS and plays games while she's in class).
Halfway through the gymnastics lesson, I looked down (I was in the parent observation room above the gym, where I was reading and waiting) and saw her teacher bending over her while she lay on the floor. She had been on the long trampoline that goes the width of the warehouse. I ran downstairs and asked what happened. He said that A said she was too tired to get up. I tried to get her to stand up, but she couldn't; she was like a heavy, limp rag doll. A said "potty", so I scooped her up and ran to the bathroom. There I put her on the floor and again, she couldn't stand...she collapsed on the bathroom floor. Neither he nor I witnessed what happened, so we assumed she fell.
At this point I freaked out. I picked her up and ran to the front desk, holding her. I kept asking her what was wrong, what hurt. She kept saying "I don't know." At one point, she said she felt "squiggly", and she also said "I'm allergic to jumping" but other than that she told me nothing. I had no idea if she was in pain, or what. I told the staff to get ready to call 911 if I needed. Again, I tried to stand her up, and this time she stood, but collapsed. Finally, on another try, she stood and was able to walk a few steps.
At this point, I called my husband. J works just a few blocks away from the gymnastics studio, and was over in a few minutes. When he came, I had A walk from me to him, about 10 feet away. She was able to do so, but was walking really off-balance, almost like she was drunk. We made the decision to take her home and go from there. D and I talked to her the whole time; I was worried about a concussion. We took her home and asked our neighbor, who's a physician's assistant, to come over. He checked her pulse and eyes, etc and said while she seemed ok we should call the doctor, which we were going to do anyway. J also started to notice that A couldn't turn her neck. J called our pediatrician, and the nurse told him to take A to the emergency room at Children's Hospital. So I loaded up the kids in the car, and, with J following behind me, drove down.
An xray showed that her neck looked irregular. They weren't sure if it was broken or a congential defect, so they wanted to do a CT scan, which we did. They wanted more information after that, so she had to have an MRI (with anesthesia, etc). Finally, at 2:30 in the morning (we'd gotten to the ER at 5:00 in the afternoon) we got our answer: yes, her neck had a congenital defect in C1 (called os odontoideum, or dens) but the ligaments around it broke (or something like that....to be honest, even though it's been explained to me about 3 times so far I still don't quite understand it all). So we were admitted. They speculate that this piece of bone has been moving for a while, and her fall, if there was a fall, was the icing on the cake to cause trauma.
Saturday was a blur. She had to go into surgery to put a halo on her head. If you don't know what that is, look here (scroll down until you see Halo Ring Brace). This device is literally screwed into her head in 6 places: 2 behind each ear and one over each eyebrow. It is really freaky looking. She will have to wear this halo for 3 months, along with the vest that it attaches to. The vest never comes off, nor does the halo, until they actually remove it. Tomorrow she goes in for a second surgery to fuse her C1 and C2 vertebrae together, which should prevent this from ever happening again.
While this has been traumatic for all of us (and A is still in a medically-induced coma and doesn't even know about the halo yet, although I tried to tell her beforehand), I am very happy. Why? Because according to every doctor and nurse I've talked to, this kind of injury usually leads to paralysis. Her spinal cord was not damaged at all. I don't understand how, especially given that I was having her walk, and transported her to the hospital (trust me, had she not been walking at the gymnastics studio I would have called 911, but since she was walking it never occurred to me that she had a neck injury) but even with all that she is able to use all four limbs. She will be ok.
Today the gymnastics owner called, and apparently another instructor witnessed the whole thing. A didn't fall after all. She went down the trampoline (as usual), jumped on the big cushy mat at the end with both feet (as usual) and bounced on her tush to slide off the mat (as usual)...only this time when she got to the floor she crumpled in a heap. So she didn't fall. It was the bouncing, and this would have happened at some point in her life regardless, apparently sooner than later. I'm just glad it was there, on a padded floor, where I was right there and HER SPINAL CORD WASN'T TOUCHED.
So after tomorrow's surgery, she'll have the halo on for 3 months. While this will be a hard 3 months, I have to keep perspective that she had the tracheostomy for 4 YEARS...and that when she got the trach they didn't know how long she'd have it (they told us she could have it for one year, or maybe the rest of her life). Knowing that this is short-term helps.
I will update later when I can. In the meantime, please hold my daughter in your prayers for a good surgery and a speedy healing and recovery.
Friday started out as a normal day. I took the kids to school, went to Target, went to Costco, and went to the gym (did my first real swim since SuperFrog, 40 laps). I picked D and A up from school, came home, then took them to gymnastics, like I do every Friday (well, A does gymnastics, D just brings his DS and plays games while she's in class).
Halfway through the gymnastics lesson, I looked down (I was in the parent observation room above the gym, where I was reading and waiting) and saw her teacher bending over her while she lay on the floor. She had been on the long trampoline that goes the width of the warehouse. I ran downstairs and asked what happened. He said that A said she was too tired to get up. I tried to get her to stand up, but she couldn't; she was like a heavy, limp rag doll. A said "potty", so I scooped her up and ran to the bathroom. There I put her on the floor and again, she couldn't stand...she collapsed on the bathroom floor. Neither he nor I witnessed what happened, so we assumed she fell.
At this point I freaked out. I picked her up and ran to the front desk, holding her. I kept asking her what was wrong, what hurt. She kept saying "I don't know." At one point, she said she felt "squiggly", and she also said "I'm allergic to jumping" but other than that she told me nothing. I had no idea if she was in pain, or what. I told the staff to get ready to call 911 if I needed. Again, I tried to stand her up, and this time she stood, but collapsed. Finally, on another try, she stood and was able to walk a few steps.
At this point, I called my husband. J works just a few blocks away from the gymnastics studio, and was over in a few minutes. When he came, I had A walk from me to him, about 10 feet away. She was able to do so, but was walking really off-balance, almost like she was drunk. We made the decision to take her home and go from there. D and I talked to her the whole time; I was worried about a concussion. We took her home and asked our neighbor, who's a physician's assistant, to come over. He checked her pulse and eyes, etc and said while she seemed ok we should call the doctor, which we were going to do anyway. J also started to notice that A couldn't turn her neck. J called our pediatrician, and the nurse told him to take A to the emergency room at Children's Hospital. So I loaded up the kids in the car, and, with J following behind me, drove down.
An xray showed that her neck looked irregular. They weren't sure if it was broken or a congential defect, so they wanted to do a CT scan, which we did. They wanted more information after that, so she had to have an MRI (with anesthesia, etc). Finally, at 2:30 in the morning (we'd gotten to the ER at 5:00 in the afternoon) we got our answer: yes, her neck had a congenital defect in C1 (called os odontoideum, or dens) but the ligaments around it broke (or something like that....to be honest, even though it's been explained to me about 3 times so far I still don't quite understand it all). So we were admitted. They speculate that this piece of bone has been moving for a while, and her fall, if there was a fall, was the icing on the cake to cause trauma.
Saturday was a blur. She had to go into surgery to put a halo on her head. If you don't know what that is, look here (scroll down until you see Halo Ring Brace). This device is literally screwed into her head in 6 places: 2 behind each ear and one over each eyebrow. It is really freaky looking. She will have to wear this halo for 3 months, along with the vest that it attaches to. The vest never comes off, nor does the halo, until they actually remove it. Tomorrow she goes in for a second surgery to fuse her C1 and C2 vertebrae together, which should prevent this from ever happening again.
While this has been traumatic for all of us (and A is still in a medically-induced coma and doesn't even know about the halo yet, although I tried to tell her beforehand), I am very happy. Why? Because according to every doctor and nurse I've talked to, this kind of injury usually leads to paralysis. Her spinal cord was not damaged at all. I don't understand how, especially given that I was having her walk, and transported her to the hospital (trust me, had she not been walking at the gymnastics studio I would have called 911, but since she was walking it never occurred to me that she had a neck injury) but even with all that she is able to use all four limbs. She will be ok.
Today the gymnastics owner called, and apparently another instructor witnessed the whole thing. A didn't fall after all. She went down the trampoline (as usual), jumped on the big cushy mat at the end with both feet (as usual) and bounced on her tush to slide off the mat (as usual)...only this time when she got to the floor she crumpled in a heap. So she didn't fall. It was the bouncing, and this would have happened at some point in her life regardless, apparently sooner than later. I'm just glad it was there, on a padded floor, where I was right there and HER SPINAL CORD WASN'T TOUCHED.
So after tomorrow's surgery, she'll have the halo on for 3 months. While this will be a hard 3 months, I have to keep perspective that she had the tracheostomy for 4 YEARS...and that when she got the trach they didn't know how long she'd have it (they told us she could have it for one year, or maybe the rest of her life). Knowing that this is short-term helps.
I will update later when I can. In the meantime, please hold my daughter in your prayers for a good surgery and a speedy healing and recovery.
Subscribe to:
Posts (Atom)
