I've gotten a couple emails and realized I hadn't updated on the blog here! Sorry!
The x-rays came back showing decreased bone density and she recommended we meet with "the endocrine guy" to follow-up with that. In the meantime, we are supplementing vitamin D and looking into other supplements that might help.
After some googling and the help of a dear friend, we managed to measure the Cobb angle of the last x-ray. I calculated 29° and John calculated 33°. We heard from Dr. K on Monday and he got 33° as well, so we were on for cast 8. We left on Wednesday morning and the girls stayed with my mother-in-law and her sister, who so kindly stayed at our home. Jae went to give Jack a hug goodbye and broke down sobbing. Not being the child with emotional tendencies, we invited her to come with us. It was a nice, easy trip with zero hiccups (okay, one hiccup - a yucky hotel room, but nothing other than that).
The casting day was fantastic. We woke up, drove to the hospital, got checked in, and finally were able to meet another casting family that we have been in contact with for a good part of this journey. It was so nice to have them there, especially since Jack tends to be a Daddy's boy on these trips. It certainly helped to have such a great friend across the hall. Dr. K joked that it was the Mehta Wing of the hospital and we talked a bit about measurements. I said that my calculation was lower than John's, but that his was validated by the doctor's. We spoke to him about the progress Jackson has made, and whether or not casting was going to continue to work, when he returned from the OR. He said he got Jack down to 24° (which he chalked up to being "the same" as last time - around 20). And, we discussed bracing extensively - and I'm on the hunt for a Providence Brace specialist now. Not much luck.
I'll try to add more later - the DSL went out, Blogger froze, and I lost the other 2/3rds of this post. So, I'm going to step away from the computer for a while and avoid throwing it across the room. Because, you know, that's not supposed to be good for it and all that.
Monday, October 13, 2008
Friday, October 03, 2008
Waiting
This afternoon we got a call from Jack's surgeon in Birmingham. He was looking at our chart and noticed that the numbers were not very good out of cast. As you may recall, this last (the 7th) cast was the best one we've ever had. Despite our frustrations, we were optimistic that this was finally the beginning of the end. We could see that his rotation had resolved, which is a huge aspect of his condition, and the angle had gotten lower than ever before. To hear that he was discouraged was totally unexpected and we were devastated that we might, yet again, be facing a battle to keep going.
We suggested an out of cast x-ray here, to be sent down to him. I then asked about whether or not we should keep our appointment and just plan on meeting with the brace guy, and whether or not he still recommended a providence (night time) brace. He said he had given up on long-distance bracing and is no longer doing that for his patients. He wants us to stay here. (Opening a whole Pandora's box of problems for us, but that's for another time.) However, he said, if the out of cast number was not below 35° we were done. No cast next week, no brace down there, that was all he could, rather would, do for Jack.
Crushing.
It was about that time that we headed out the door for his neurofibromatosis clinic appointment (great timing, huh?). We went to the ortho clinic first and had his cast removed and, of course, no one had called in the last two hours to actually order the x-rays. So, we called down there, spoke with the ortho clinic here, and tried to coordinate it the best we could - no luck.
Finally, in a last-ditch effort, I suggested calling our primary care doc. (There were no doctors in the clinic who could write an x-ray order and our surgeon didn't have rights at the hospital). Sure enough, Dr. H came to the rescue, faxed the order over immediately, and saved the day! They heard us in the ortho clinic and said not to bother going to radiology, that they could do the x-ray right there after his cast was removed. Done and done.
We then rushed up a floor to the NF clinic, went to the wrong desk per the information girl who had no idea what we were talking about, and finally found the check-in. We met with the nurse practitioner in neurology. She was incredibly nice, great bedside manner, but I had to suggest things like using the UV light to check for spots.
We discussed the fact that there is no medical history for DH's family, except that it was noted that the men seemed to have a problem with kyphosis. She examined his tibial bowing, felt for his bumps under his skin on the neck/skull area (she thinks she found one, but said sometimes they hide and then come back, that it's not uncommon).
We also discussed the possibility of rickets causing his leg issues and she offered to do a wrist and ankle x-ray to be sure, since that is fairly non-invasive and we were doing leg x-rays anyway. She ordered a vision test for him, to check for the lisch nodules and optic glioma, and said the standard protocol is to see him once a year unless something comes up. She said, we're pretty sure he has it - he has six spots, so he's right on the edge. I don't want to make any definitive calls without talking to the doctor about his spine because while it's well-documented in NF, it looks like there is some family history there that may explain it. (Not at ALL what I meant by bringing up the kyphosis in DH's family - I meant to imply that perhaps it was undiagnosed NF1. Apparently she got the wrong idea there.)
So, we are waiting for the x-rays to check on his tibia, and I imagine, to see what the neurologist says - but it looks like, for the time being, he has NF1.
I also have the x-ray pictures in a jpeg and just cannot tell what the numbers are. It's going to kill me to wait until Monday to get numbers. I have a hotel to book and plans to make for Wednesday - and if he isn't going down there, I need to call and get in to our local doctor and figure out where the heck we're going to get a decent brace in this city.
And, so, here I am - waiting, once again.
We suggested an out of cast x-ray here, to be sent down to him. I then asked about whether or not we should keep our appointment and just plan on meeting with the brace guy, and whether or not he still recommended a providence (night time) brace. He said he had given up on long-distance bracing and is no longer doing that for his patients. He wants us to stay here. (Opening a whole Pandora's box of problems for us, but that's for another time.) However, he said, if the out of cast number was not below 35° we were done. No cast next week, no brace down there, that was all he could, rather would, do for Jack.
Crushing.
It was about that time that we headed out the door for his neurofibromatosis clinic appointment (great timing, huh?). We went to the ortho clinic first and had his cast removed and, of course, no one had called in the last two hours to actually order the x-rays. So, we called down there, spoke with the ortho clinic here, and tried to coordinate it the best we could - no luck.
Finally, in a last-ditch effort, I suggested calling our primary care doc. (There were no doctors in the clinic who could write an x-ray order and our surgeon didn't have rights at the hospital). Sure enough, Dr. H came to the rescue, faxed the order over immediately, and saved the day! They heard us in the ortho clinic and said not to bother going to radiology, that they could do the x-ray right there after his cast was removed. Done and done.
We then rushed up a floor to the NF clinic, went to the wrong desk per the information girl who had no idea what we were talking about, and finally found the check-in. We met with the nurse practitioner in neurology. She was incredibly nice, great bedside manner, but I had to suggest things like using the UV light to check for spots.
We discussed the fact that there is no medical history for DH's family, except that it was noted that the men seemed to have a problem with kyphosis. She examined his tibial bowing, felt for his bumps under his skin on the neck/skull area (she thinks she found one, but said sometimes they hide and then come back, that it's not uncommon).
We also discussed the possibility of rickets causing his leg issues and she offered to do a wrist and ankle x-ray to be sure, since that is fairly non-invasive and we were doing leg x-rays anyway. She ordered a vision test for him, to check for the lisch nodules and optic glioma, and said the standard protocol is to see him once a year unless something comes up. She said, we're pretty sure he has it - he has six spots, so he's right on the edge. I don't want to make any definitive calls without talking to the doctor about his spine because while it's well-documented in NF, it looks like there is some family history there that may explain it. (Not at ALL what I meant by bringing up the kyphosis in DH's family - I meant to imply that perhaps it was undiagnosed NF1. Apparently she got the wrong idea there.)
So, we are waiting for the x-rays to check on his tibia, and I imagine, to see what the neurologist says - but it looks like, for the time being, he has NF1.
I also have the x-ray pictures in a jpeg and just cannot tell what the numbers are. It's going to kill me to wait until Monday to get numbers. I have a hotel to book and plans to make for Wednesday - and if he isn't going down there, I need to call and get in to our local doctor and figure out where the heck we're going to get a decent brace in this city.
And, so, here I am - waiting, once again.
Sunday, September 07, 2008
Lazy Sunday
I suppose, if I tried really hard, I could tell you how this video was somehow relevant to Jack's condition and treatment. Those who know us, know we slapped that Obama sticker on our car long before was the Democratic Nominee. He's our home-town candidate, being from Illinois, and we firmly believe he will be the next POTUS. We wish him, and his family, the best of luck and support them wholeheartedly. And, when he is elected, I know that the hefty tax dollars we already pay to the government will be used in better healthcare solutions.
Having battled our share of fights over the last fifteen months, knowing what it is like to deal with the shock and grief of a new diagnosis and then have to constantly battle the insurance company to get your infant what they need. Well, it's just not something I wish upon anyone. I cannot fathom being Barack Obama, watching his mother on the phone, fighting with insurance companies while dying of cancer.
The sick and twisted reality is - the bills continue to come even when the battle is over. And, no family should have to deal with raising a child alone, struggling to deal with the profound grief, and deciding whether the food is on the table or the hospice care will be paid for. No family should choose radiation over power in their home.
And so, I will end that commentary with a smile. A bit of background: http://en.wikipedia.org/wiki/Rickroll
This of this as a 'rack roll :)
">
Having battled our share of fights over the last fifteen months, knowing what it is like to deal with the shock and grief of a new diagnosis and then have to constantly battle the insurance company to get your infant what they need. Well, it's just not something I wish upon anyone. I cannot fathom being Barack Obama, watching his mother on the phone, fighting with insurance companies while dying of cancer.
The sick and twisted reality is - the bills continue to come even when the battle is over. And, no family should have to deal with raising a child alone, struggling to deal with the profound grief, and deciding whether the food is on the table or the hospice care will be paid for. No family should choose radiation over power in their home.
And so, I will end that commentary with a smile. A bit of background: http://en.wikipedia.org/wiki/Rickroll
This of this as a 'rack roll :)
">
Tuesday, September 02, 2008
PSA: The FDA finds lead in vitamins
Those who know me, and my husband's experience in pharma litigation, know that we are hard core skeptics in what the FDA approves and does not approve for our bodies and the bodies of our children. Yet again, they have failed us.
http://www.thedailygreen.com/environmental-news/latest/lead-vitamins-082803
http://www.thedailygreen.com/environmental-news/latest/lead-vitamins-082803
Friday, August 22, 2008
Gluten Free Baby
After some nudging in the right direction by good friends, I took gluten out of Jack's diet last week. It's been, oh, 8 days since he's had gluten. The whole family joined him in a show of solidarity for about a week. We're still avoiding gluten, but also don't want to be wasteful with the foods we have in the house already. So, at times the rest of us have gluten and he and the older two do not.
We've seen some behavioral improvement in the older two girls who were become increasingly aggressive with one another. But, most importantly, we've seen a huge difference in Jack's - ahem - digestive process. As you may recall, he's been taking a daily chewable probiotic, high-quality, refrigerated stuff, since the last round of antibiotics for an ear infection. It was helping slightly, or so we thought, until we brought him home post-cast seven.
Three diaper leaks and we were at wit's end. It was the first weekend and we could not believe we were already dealing with a potentially ruined cast. Dad almost took him to the ER to have it cut off late one night, but I was persistent with a popsicle stick and wash cloths and we salvaged it.
Being the good proactive friends they are, they wanted to help me get to the bottom of this (ha - no pun intended) digestive thing he had going on. Jack has always had issues with eating, major sensory things going on, low oral motor function, and general pickiness. He ate almost nothing BUT gluten/wheat - circle cut peanut butter sandwiches, pasta, breads, cereal. I knew that children who have allergies and intolerances often crave what they should not have. In some kids it causes an opiate reaction in the brain and they not only crave it, they go through withdrawal and having it is the only thing that makes them feel better. In fact, we had a nutritionist and an oral motor therapist coming this week because the developmental therapist noticed just enough drooling in Jack to warrant concern. During his report, both the DT and the PT recommended oral motor and feeding therapy based on what they observed. There's a feeding clinic in Springfield we may still utilize. But, I digress.
This past 9 days, off gluten, we've seen a marked improvement. He has had two bouts of diarrhea and both were 12 hours, give or take, after a significant gluten exposure. The first was cookies at Grandma's house. The second was cereal last night (Dad forgot this kind had gluten - most of what is in the house does not.)
So, we're pretty sure now that the theory has been tested twice.
However, in the last 9 days he's also done really well with eating new foods. He put watermelon in his mouth (spit it out, but that's an excellent first step). He is eating berries, cucumbers, tomatoes, shrimp!!!, rice, eggs, champagne grapes, bananas, green beans, peanuts, beans, taquitos - the list goes on and on. And, we've been able to identify both some conventional cereals and speciality cereals that are gluten-free that he likes. Trace gluten doesn't seem to bother him (such as the barley malt in Frosted Flakes) and we're hoping oatmeal will be okay (many people who can't digest gluten also cannot process oats properly or they are contaminated with gluten in the growing/processing). But, we may revisit that later on and see how it goes. Maybe a cast-free week! :)
We are so grateful to be raising children in a day when stores like Trader Joe's and Whole Foods are in our area. Trader Joe's has boxes of banana waffles that are gluten and dairy free - and AFFORDABLE! (Shocker!) They also have great gluten-free pancakes as well as brownie mix and pancake mix in the shelf-stable areas. We've found one bread that we like called Food for Life and we are anxious to find a more affordable source than Dierbergs (I believe it was $7 a loaf). A friend on the West Coast said her TJ's has it for about half that. Amazon also has a grocery section and free shipping for $25 orders and up. So, when we're able, we will get some cases of his favorite items. Right now we're just eating a lot of rice, a lot of potatoes, eggs, beans, fruits, and veggies.
And, we're also fortunate that his seems to be an intolerance. I feel for those who deal with Celiac on a daily basis and cannot have a single trace of gluten. I know families who cannot eat fries unless they are made in a designated fryer because the chicken nugget breading had gluten in it and got in there somehow.
But, between relief from his digestive problems and the sore on his body finally scabbing after three weeks, Jack is regaining some normalcy and enjoying play time once again. Did you hear that collective sigh of relief?
We've seen some behavioral improvement in the older two girls who were become increasingly aggressive with one another. But, most importantly, we've seen a huge difference in Jack's - ahem - digestive process. As you may recall, he's been taking a daily chewable probiotic, high-quality, refrigerated stuff, since the last round of antibiotics for an ear infection. It was helping slightly, or so we thought, until we brought him home post-cast seven.
Three diaper leaks and we were at wit's end. It was the first weekend and we could not believe we were already dealing with a potentially ruined cast. Dad almost took him to the ER to have it cut off late one night, but I was persistent with a popsicle stick and wash cloths and we salvaged it.
Being the good proactive friends they are, they wanted to help me get to the bottom of this (ha - no pun intended) digestive thing he had going on. Jack has always had issues with eating, major sensory things going on, low oral motor function, and general pickiness. He ate almost nothing BUT gluten/wheat - circle cut peanut butter sandwiches, pasta, breads, cereal. I knew that children who have allergies and intolerances often crave what they should not have. In some kids it causes an opiate reaction in the brain and they not only crave it, they go through withdrawal and having it is the only thing that makes them feel better. In fact, we had a nutritionist and an oral motor therapist coming this week because the developmental therapist noticed just enough drooling in Jack to warrant concern. During his report, both the DT and the PT recommended oral motor and feeding therapy based on what they observed. There's a feeding clinic in Springfield we may still utilize. But, I digress.
This past 9 days, off gluten, we've seen a marked improvement. He has had two bouts of diarrhea and both were 12 hours, give or take, after a significant gluten exposure. The first was cookies at Grandma's house. The second was cereal last night (Dad forgot this kind had gluten - most of what is in the house does not.)
So, we're pretty sure now that the theory has been tested twice.
However, in the last 9 days he's also done really well with eating new foods. He put watermelon in his mouth (spit it out, but that's an excellent first step). He is eating berries, cucumbers, tomatoes, shrimp!!!, rice, eggs, champagne grapes, bananas, green beans, peanuts, beans, taquitos - the list goes on and on. And, we've been able to identify both some conventional cereals and speciality cereals that are gluten-free that he likes. Trace gluten doesn't seem to bother him (such as the barley malt in Frosted Flakes) and we're hoping oatmeal will be okay (many people who can't digest gluten also cannot process oats properly or they are contaminated with gluten in the growing/processing). But, we may revisit that later on and see how it goes. Maybe a cast-free week! :)
We are so grateful to be raising children in a day when stores like Trader Joe's and Whole Foods are in our area. Trader Joe's has boxes of banana waffles that are gluten and dairy free - and AFFORDABLE! (Shocker!) They also have great gluten-free pancakes as well as brownie mix and pancake mix in the shelf-stable areas. We've found one bread that we like called Food for Life and we are anxious to find a more affordable source than Dierbergs (I believe it was $7 a loaf). A friend on the West Coast said her TJ's has it for about half that. Amazon also has a grocery section and free shipping for $25 orders and up. So, when we're able, we will get some cases of his favorite items. Right now we're just eating a lot of rice, a lot of potatoes, eggs, beans, fruits, and veggies.
And, we're also fortunate that his seems to be an intolerance. I feel for those who deal with Celiac on a daily basis and cannot have a single trace of gluten. I know families who cannot eat fries unless they are made in a designated fryer because the chicken nugget breading had gluten in it and got in there somehow.
But, between relief from his digestive problems and the sore on his body finally scabbing after three weeks, Jack is regaining some normalcy and enjoying play time once again. Did you hear that collective sigh of relief?
Tuesday, August 19, 2008
Logical Consequences
I've been thinking about this for a while now. When our children make a choice, there is a logical consequence to their action. We try to use this philosophy in discipline, to help educate them to do better in the future and understand the breadth of their decision. Like most parenting methods, sometimes it works, sometimes it doesn't. But, the majority of the time it is effective.
At times, it seems they will never fully grasp the concept of personal responsibility. These moments are some of the most frustrating for me, as a parent. The times when you've brought attention to the same behavior for the fifteenth time that day and you want to run, screaming like a banshee down the street in your pajamas, leaving the neighbors to wonder what it was that drove that young mother down the street to the brink of insanity. Or, perhaps just nodding in silent agreement.
This past two weeks, this is precisely the feeling I've had regarding the healthcare providers responsible for Jack's care out of state. While his surgeon is fantastic, experienced, gentle, and truly not unlike an artist in his manipulation of the spine and careful application of the cast, the follow-up care is rudimentary, crude, and at this point has crossed the line into negligent.
I don't respond well to injury to a child - in particular, injury to MY child. A group of moms I know refer to this as being a "mama bear." We are ferociously protective of our young. So, when we first discovered the sore under his cast, I began to get angry. Every day, when he would hold his arms up to us, begging for comfort, screaming that it hurt, I grew angrier. Over time, the injury grew worse. Once we got a visual of the injury, it became apparent that this was not a pressure sore. This was not a rubbing spot, such as the ones that we deal with on his hip bones. THIS was negligent. THIS was careless. This was done by someone. Whether it was the saw creating this abrasion or the sharp edge of the fiberglass, we may never know. However, it was done while he was still outstretched. There was no way to get down under the cast for it to have happened any other way.
Today, nineteen days later, here is a nearly one inch by one quarter inch rectangular piece of skin gone from his body. The depth is enough to rest the pad of your finger beneath the surface. For nineteen days he has been in pain, at the hand of someone who did not do their job adequately. Were it an accident, had we been told about it and had it been addressed, this would be a non-issue. I cannot fathom how someone would have NOT seen this injury when he was outstretched.
The parties in question have consistently caused difficulty for Jack. He has returned to the room with unpadded edges, haphazardly taped in place. He has experienced repeated irritation from tape placed directly on his skin. He has a significant cavern in his rib cage, two inches up from the edge, due to improper placement of the mushroom cut-out. He has had two separate incidents where his abdomen was either cut or rubbed by fiberglass, leaving open wounds struggling to heal while pressed against the edge of a (necessarily) snug cast. He is in a beautifully corrective cast right now that was so poorly trimmed in the front, it presses against his esophagus when he is seated. Windows are not padded. Large pieces are missed, causing it to press deep into his bladder when he's seated. It is, to say the least, inadequate.
"Well, tell someone," right? We have. When we draw attention to the problems, they are (sometimes) fixed. We press, "He has to live in this for 8 weeks." They reply with a flippant, "I KNOW he has to live in it for EIGHT WEEKS!" Okay - then FIX IT!
The battle for proper post-cast care is ongoing. The first time we were told this we were new to the hospital. They hadn't done many of these - were still learning the ropes, they said. What is the excuse now, six months later? Four casts now and this staff cannot get it right. We are told they are over-worked. We are told they have to be in charge of the ER and the OR and the clinic and will get to us when they can. Last time we sat for hour upon hour, then had to carry him down to the clinic and sit in the waiting room. He was groggy and out of it from the anesthesia. He could not stand on his own. He was still bleeding from his IV site and inconsolable. And we had to sit in a waiting room with kids who were ready to have an arm cast removed and return to the pool, happily playing, while our boy was miserable. Somehow, when they don't do their job right the first time, we are the ones who pay the price. There is no logical consequence. There is no lesson that is learned. And, I am running down the street in my mind right now, at wits end. I don't know what the end result will be. I don't know if anything will change. I am ever so slightly afraid to rock the boat and compromise his care. We clearly aren't in there when they're doing this and I don't know that I can trust them to perform this task again. I've contemplated telling them to just let us do the padding, but that would leave him with raw edges and an unpadded cast - subject to injury from fiberglass - for at least an hour. And, we don't have a cast saw in the room. Every time this has happened in the past, we've hoped that maybe next time it will be better. It isn't. It's worse.
We are sad and miss Shriners and their amazing ortho tech. She was motherly and kind. She carefully padded every edge with perfection. She would be the perfect partner for our current surgeon. Second to her is our local Children's hospital. They were kind enough to fit us in yesterday, for an emergency repair (third total repair in the same cast, three facilities). With precision they trimmed the area, re-padded and re-taped, and for the first time in nineteen days our boy had a bit of comfort - or perhaps just hope. This time he didn't even cry when they started the saw (usually an invitation for hysterics). We explained to him over and over that we promised we were going to make his side all better. I think, for the first time in weeks, he had hope that it was almost over. So, even though it was still raw and bleeding, he smiled and whispered his little, "Thank you," to the tech.
We are reaching the end of our ability to cope. The trauma of him being taken from our arms is excruciating - for us and him. While he does have the Versed, which is supposed to be a sedative and amnesiac, it doesn't work completely. For nearly two weeks he screams in his sleep. He will reach his arms out at night, pleading, "Hold you, Daddy. Hold you!" When they take him back, he is in hysterics and it never fails that another nurse has to come and hold our thrashing boy. Perhaps his memory is foggy, but it is there - embedded in his mind that Daddy left him time and time again. When John is home, he has to hold him and walk around. The psychological trauma is compounding and it is having a lasting effect on the way he interacts with adults. Recently, a therapist brought to light for us that it has also influenced his interaction with children now.
But, once again, I ask the question, "What choice do we have?"
At times, it seems they will never fully grasp the concept of personal responsibility. These moments are some of the most frustrating for me, as a parent. The times when you've brought attention to the same behavior for the fifteenth time that day and you want to run, screaming like a banshee down the street in your pajamas, leaving the neighbors to wonder what it was that drove that young mother down the street to the brink of insanity. Or, perhaps just nodding in silent agreement.
This past two weeks, this is precisely the feeling I've had regarding the healthcare providers responsible for Jack's care out of state. While his surgeon is fantastic, experienced, gentle, and truly not unlike an artist in his manipulation of the spine and careful application of the cast, the follow-up care is rudimentary, crude, and at this point has crossed the line into negligent.
I don't respond well to injury to a child - in particular, injury to MY child. A group of moms I know refer to this as being a "mama bear." We are ferociously protective of our young. So, when we first discovered the sore under his cast, I began to get angry. Every day, when he would hold his arms up to us, begging for comfort, screaming that it hurt, I grew angrier. Over time, the injury grew worse. Once we got a visual of the injury, it became apparent that this was not a pressure sore. This was not a rubbing spot, such as the ones that we deal with on his hip bones. THIS was negligent. THIS was careless. This was done by someone. Whether it was the saw creating this abrasion or the sharp edge of the fiberglass, we may never know. However, it was done while he was still outstretched. There was no way to get down under the cast for it to have happened any other way.
Today, nineteen days later, here is a nearly one inch by one quarter inch rectangular piece of skin gone from his body. The depth is enough to rest the pad of your finger beneath the surface. For nineteen days he has been in pain, at the hand of someone who did not do their job adequately. Were it an accident, had we been told about it and had it been addressed, this would be a non-issue. I cannot fathom how someone would have NOT seen this injury when he was outstretched.
The parties in question have consistently caused difficulty for Jack. He has returned to the room with unpadded edges, haphazardly taped in place. He has experienced repeated irritation from tape placed directly on his skin. He has a significant cavern in his rib cage, two inches up from the edge, due to improper placement of the mushroom cut-out. He has had two separate incidents where his abdomen was either cut or rubbed by fiberglass, leaving open wounds struggling to heal while pressed against the edge of a (necessarily) snug cast. He is in a beautifully corrective cast right now that was so poorly trimmed in the front, it presses against his esophagus when he is seated. Windows are not padded. Large pieces are missed, causing it to press deep into his bladder when he's seated. It is, to say the least, inadequate.
"Well, tell someone," right? We have. When we draw attention to the problems, they are (sometimes) fixed. We press, "He has to live in this for 8 weeks." They reply with a flippant, "I KNOW he has to live in it for EIGHT WEEKS!" Okay - then FIX IT!
The battle for proper post-cast care is ongoing. The first time we were told this we were new to the hospital. They hadn't done many of these - were still learning the ropes, they said. What is the excuse now, six months later? Four casts now and this staff cannot get it right. We are told they are over-worked. We are told they have to be in charge of the ER and the OR and the clinic and will get to us when they can. Last time we sat for hour upon hour, then had to carry him down to the clinic and sit in the waiting room. He was groggy and out of it from the anesthesia. He could not stand on his own. He was still bleeding from his IV site and inconsolable. And we had to sit in a waiting room with kids who were ready to have an arm cast removed and return to the pool, happily playing, while our boy was miserable. Somehow, when they don't do their job right the first time, we are the ones who pay the price. There is no logical consequence. There is no lesson that is learned. And, I am running down the street in my mind right now, at wits end. I don't know what the end result will be. I don't know if anything will change. I am ever so slightly afraid to rock the boat and compromise his care. We clearly aren't in there when they're doing this and I don't know that I can trust them to perform this task again. I've contemplated telling them to just let us do the padding, but that would leave him with raw edges and an unpadded cast - subject to injury from fiberglass - for at least an hour. And, we don't have a cast saw in the room. Every time this has happened in the past, we've hoped that maybe next time it will be better. It isn't. It's worse.
We are sad and miss Shriners and their amazing ortho tech. She was motherly and kind. She carefully padded every edge with perfection. She would be the perfect partner for our current surgeon. Second to her is our local Children's hospital. They were kind enough to fit us in yesterday, for an emergency repair (third total repair in the same cast, three facilities). With precision they trimmed the area, re-padded and re-taped, and for the first time in nineteen days our boy had a bit of comfort - or perhaps just hope. This time he didn't even cry when they started the saw (usually an invitation for hysterics). We explained to him over and over that we promised we were going to make his side all better. I think, for the first time in weeks, he had hope that it was almost over. So, even though it was still raw and bleeding, he smiled and whispered his little, "Thank you," to the tech.
We are reaching the end of our ability to cope. The trauma of him being taken from our arms is excruciating - for us and him. While he does have the Versed, which is supposed to be a sedative and amnesiac, it doesn't work completely. For nearly two weeks he screams in his sleep. He will reach his arms out at night, pleading, "Hold you, Daddy. Hold you!" When they take him back, he is in hysterics and it never fails that another nurse has to come and hold our thrashing boy. Perhaps his memory is foggy, but it is there - embedded in his mind that Daddy left him time and time again. When John is home, he has to hold him and walk around. The psychological trauma is compounding and it is having a lasting effect on the way he interacts with adults. Recently, a therapist brought to light for us that it has also influenced his interaction with children now.
But, once again, I ask the question, "What choice do we have?"
Tuesday, August 12, 2008
The Zoo
In an effort to distract ourselves from the very long wait for a return call, we took the kids over to the Zoo for two hours yesterday evening. They have extended hours until Labor Day and it was a rare 80° in August. There are some new Dinos on display that they've missed out on the chance to see, so we took advantage of the nice weather and headed out.
Monday, August 11, 2008
Sunday, August 10, 2008
Here we go again
10 days into cast #7 - the best cast yet - and so far major problems.
The first week, he cried and cried. Seeing a toddler with desperation and shock in his eyes, violently shaking his head no against the pain, reaching his tiny hands up to you, begging for help is not my favorite experience along this casting journey. We thought perhaps it was the ortho tech's hasty trimming and that he missed padding spots (again). We thought perhaps it was muscle soreness from all the manipulation. We thought maybe he was feeling choked because they left it too high on his collar bone and in the car it presses against his esophagus. We thought he might be getting yet another ear infection.
Finally, after a week of motrin, off and on, I did a visual inspection. This sounds easy enough, but let me assure you - a wiggly toddler, thrashing against what is causing him terrible pain, confined to a fiberglass cast - this is not an easy task. His hips were red and inflamed, as is typical. His right underarm was terrible - red, irritated, inflamed. The lack of detail and caution with which the ortho techs pad his cast continues to appall me. I once again had to try to maneuver the thinnest moleskin I could on the edge of the underarm portion. After some bending over a knee, allowing him to calm and go the slightest bit limp, and quick and careful skin manipulation, I was able to get the right arm done.
I moved him to the left, promising, "Just a soft sticky. This isn't going to hurt. I'll go quickly." Daddy held him across his knee, we again tried to use some gravity to pull the cast downward, ever so gently pulling his skin up and away. It was sticking to the shirt layer of his cast! I knew it was bad. I thought they had gotten tape adhesive on the shirt (again) and that was the culprit of much discomfort, irritating his skin. It was just the edge. I was shocked to see this about a half inch below the edge of the cast:
Yet again, out of contact with his physician - out of contact with anyone who really understands what all these wounds entail as far as care, once again angry, frustrated, sickened, disheartened, and sadder than I can articulate for all this baby has to go through. The moist burn care pads don't seem to be helping, but don't seem to be harming either. After having his belly button cut, apparently, either by a cast saw or the sharp edge of fiberglass against it, just last cast - I can't help but wonder what the origin of this one is. When his arm is down, the raw, jagged edges come together. Raising his arms leaves it open and gaping with a white center and bleeding edges. My heart breaks for him. And, tonight, again, we give him motrin and pray for the best tomorrow when we FINALLY will get some answer as to what needs to be done.
The first week, he cried and cried. Seeing a toddler with desperation and shock in his eyes, violently shaking his head no against the pain, reaching his tiny hands up to you, begging for help is not my favorite experience along this casting journey. We thought perhaps it was the ortho tech's hasty trimming and that he missed padding spots (again). We thought perhaps it was muscle soreness from all the manipulation. We thought maybe he was feeling choked because they left it too high on his collar bone and in the car it presses against his esophagus. We thought he might be getting yet another ear infection.
Finally, after a week of motrin, off and on, I did a visual inspection. This sounds easy enough, but let me assure you - a wiggly toddler, thrashing against what is causing him terrible pain, confined to a fiberglass cast - this is not an easy task. His hips were red and inflamed, as is typical. His right underarm was terrible - red, irritated, inflamed. The lack of detail and caution with which the ortho techs pad his cast continues to appall me. I once again had to try to maneuver the thinnest moleskin I could on the edge of the underarm portion. After some bending over a knee, allowing him to calm and go the slightest bit limp, and quick and careful skin manipulation, I was able to get the right arm done.
I moved him to the left, promising, "Just a soft sticky. This isn't going to hurt. I'll go quickly." Daddy held him across his knee, we again tried to use some gravity to pull the cast downward, ever so gently pulling his skin up and away. It was sticking to the shirt layer of his cast! I knew it was bad. I thought they had gotten tape adhesive on the shirt (again) and that was the culprit of much discomfort, irritating his skin. It was just the edge. I was shocked to see this about a half inch below the edge of the cast:
Yet again, out of contact with his physician - out of contact with anyone who really understands what all these wounds entail as far as care, once again angry, frustrated, sickened, disheartened, and sadder than I can articulate for all this baby has to go through. The moist burn care pads don't seem to be helping, but don't seem to be harming either. After having his belly button cut, apparently, either by a cast saw or the sharp edge of fiberglass against it, just last cast - I can't help but wonder what the origin of this one is. When his arm is down, the raw, jagged edges come together. Raising his arms leaves it open and gaping with a white center and bleeding edges. My heart breaks for him. And, tonight, again, we give him motrin and pray for the best tomorrow when we FINALLY will get some answer as to what needs to be done.
Sunday, August 03, 2008
Lucky Seven
Cast seven is on and all is well.
The sixth cast corrected, but not as well as we'd hoped. Despite being down to 29° in the cast, by the time we made it back to B'ham for cast seven, it was up to 40° again.
However, Dr. K was able to get his spine back down to 20° - this is the best he's ever done, ever. Ever! His spine looks so amazingly great. His rotation is almost gone. You can see the "headlights" on his vertebrae the entire way up, which has never been seen before in the 14 months we've been looking at films. His ribs look fantastic, too. I never, in a million years, thought he'd look this great. Part of me is ecstatic - with hope restored, renewed faith in the treatment, and the promise of tomorrow. But, I've learned that for every up on this journey, there is almost certainly a down. So, I'm trying to temper my enthusiasm with a hefty dose of reality check.
But, yeah - a lot of enthusiasm!
I even emailed to ask for copies of his x-rays, they were so impressive. The first is out of cast six, while under anesthesia. The second is in cast seven. Lucky number seven.
Fantastic, right?
We also had a great trip to the beach. Jack did great at the ocean and enjoyed the water and the sand. It was hard to go back to "normal" life in a cast, but at the same time - glorious to have that precious time with him on his birthday. I cannot think of a better gift than that.
And, hope.
The sixth cast corrected, but not as well as we'd hoped. Despite being down to 29° in the cast, by the time we made it back to B'ham for cast seven, it was up to 40° again.
However, Dr. K was able to get his spine back down to 20° - this is the best he's ever done, ever. Ever! His spine looks so amazingly great. His rotation is almost gone. You can see the "headlights" on his vertebrae the entire way up, which has never been seen before in the 14 months we've been looking at films. His ribs look fantastic, too. I never, in a million years, thought he'd look this great. Part of me is ecstatic - with hope restored, renewed faith in the treatment, and the promise of tomorrow. But, I've learned that for every up on this journey, there is almost certainly a down. So, I'm trying to temper my enthusiasm with a hefty dose of reality check.
But, yeah - a lot of enthusiasm!
I even emailed to ask for copies of his x-rays, they were so impressive. The first is out of cast six, while under anesthesia. The second is in cast seven. Lucky number seven.
Fantastic, right?
We also had a great trip to the beach. Jack did great at the ocean and enjoyed the water and the sand. It was hard to go back to "normal" life in a cast, but at the same time - glorious to have that precious time with him on his birthday. I cannot think of a better gift than that.
And, hope.
Monday, July 21, 2008
Saturday, July 19, 2008
And hello in Cadiz!!!!
Just a little side note to whomever reads from Cadiz.
A few months ago I installed a sitemeter that lets me know the general region of who is reading and when. It doesn't give me much beyond location, time of visit, and length of visit - but it's always interesting.
I also want to give a shout out to whomever is accessing the blog at Harvard. Maybe it is a friend of a friend. Maybe it's a medical professional who stumbled onto the blog - but it's still intriguing to me to see that on there. :)
There's someone whose server is linked through Cadiz, Kentucky and the first time it popped up we were pleasantly surprised. Every time we drive to Birmingham, we stop in Cadiz. We stumbled upon this little gas station and gift shop our first time down South for casting, and it has become an important part of our commute. We stop, fill up the tank, and I get to go walk around in the gift shop - eyeing the Vera Bradleys and occasionally buying a lil' kinz for the girls (the have the best prices!).
So, hello in Cadiz! :)
A few months ago I installed a sitemeter that lets me know the general region of who is reading and when. It doesn't give me much beyond location, time of visit, and length of visit - but it's always interesting.
I also want to give a shout out to whomever is accessing the blog at Harvard. Maybe it is a friend of a friend. Maybe it's a medical professional who stumbled onto the blog - but it's still intriguing to me to see that on there. :)
There's someone whose server is linked through Cadiz, Kentucky and the first time it popped up we were pleasantly surprised. Every time we drive to Birmingham, we stop in Cadiz. We stumbled upon this little gas station and gift shop our first time down South for casting, and it has become an important part of our commute. We stop, fill up the tank, and I get to go walk around in the gift shop - eyeing the Vera Bradleys and occasionally buying a lil' kinz for the girls (the have the best prices!).
So, hello in Cadiz! :)
Here we go, again
Remember all the antibiotics this summer? And the subsequent tummy upset that left us cleaning and re-taping, again and again.
This time, our luck ran out and we had no more tricks up our sleeve. Apparently, early in the morning, when a diaper is really good and wet, there is no place for, ahem, solid matter to go but up and out. Snug as a 7 week cast is, there was little room for navigation. We attempted to use rounded/soft/small handles to guide a wipe into the area, but it was clear that there was more - and we weren't getting it out.
After an hour of calls, pleading, more calls, more pleading, finally our saga fell on sympathetic ears at Shriner's St. L (thank you, Dr. R). We headed over immediately, and once again, we have a turtle without a shell.
The good news is, it looks good. Remember last time, as soon as it was off John knew it was worse? This doesn't have that feel at all. It looks better! Perfect? Not by a long shot. In fact, I am beginning to think his torso will always be deformed. His rotation is still significant. If there was some way to de-rotate the spine and get it to stay in position, we'd be set. But, not unlike a Slinky's coil, his spine just seems to pop right back despite best efforts of all involved.
John is particularly concerned about his ribs. He doesn't like being touched and he's still wobbly when walking, so I don't want to mess with him too much - poking and prodding. I'll investigate more this evening when he soaks off all this dead skin in the tub. Speaking of, his skin is horrendous this time. There is about a half-dollar sized spot where the trapped matter had already started deteriorating his skin. But, that aside, John said when they cracked off the cast a large spot high up on his hip (not visible from the outside and not the spot that was looking so bad in June). It was a large leathery piece of skin that was attached like a scab, all of which pulled off with the cast. Poor buddy. It's astonishing to me how much they go through that we don't even know about, and really saddening. He can't possibly articulate what that is and what it feels like, except perhaps the tears in the car from sitting too long or the tugging on the side or hips.
Hopefully T will return our call before Monday. If not, we'll follow-up with her in the office and hope and pray they can get him in for an appointment this week. Seeing this improvement reiterates to me that 7 weeks is good. 9 is bad. 6-7 = improvement. 9-10 = deteriorating in the end.
This time, our luck ran out and we had no more tricks up our sleeve. Apparently, early in the morning, when a diaper is really good and wet, there is no place for, ahem, solid matter to go but up and out. Snug as a 7 week cast is, there was little room for navigation. We attempted to use rounded/soft/small handles to guide a wipe into the area, but it was clear that there was more - and we weren't getting it out.
After an hour of calls, pleading, more calls, more pleading, finally our saga fell on sympathetic ears at Shriner's St. L (thank you, Dr. R). We headed over immediately, and once again, we have a turtle without a shell.
The good news is, it looks good. Remember last time, as soon as it was off John knew it was worse? This doesn't have that feel at all. It looks better! Perfect? Not by a long shot. In fact, I am beginning to think his torso will always be deformed. His rotation is still significant. If there was some way to de-rotate the spine and get it to stay in position, we'd be set. But, not unlike a Slinky's coil, his spine just seems to pop right back despite best efforts of all involved.
John is particularly concerned about his ribs. He doesn't like being touched and he's still wobbly when walking, so I don't want to mess with him too much - poking and prodding. I'll investigate more this evening when he soaks off all this dead skin in the tub. Speaking of, his skin is horrendous this time. There is about a half-dollar sized spot where the trapped matter had already started deteriorating his skin. But, that aside, John said when they cracked off the cast a large spot high up on his hip (not visible from the outside and not the spot that was looking so bad in June). It was a large leathery piece of skin that was attached like a scab, all of which pulled off with the cast. Poor buddy. It's astonishing to me how much they go through that we don't even know about, and really saddening. He can't possibly articulate what that is and what it feels like, except perhaps the tears in the car from sitting too long or the tugging on the side or hips.
Hopefully T will return our call before Monday. If not, we'll follow-up with her in the office and hope and pray they can get him in for an appointment this week. Seeing this improvement reiterates to me that 7 weeks is good. 9 is bad. 6-7 = improvement. 9-10 = deteriorating in the end.
Wednesday, July 16, 2008
Riding this one out
3 more weeks and we're getting to the point where the cast is snug as a bug and the tummy seems to just stick waaaay out. But, he's in good spirits, sleeping well, and about five times a day he says, "hungee. 'nack?"
His favorite food is a circle-cut peanut butter sandwich. If you are a mom, and you haven't discovered the Pampered Chef circle cutter, as it is affectionately known in my house, look it up. It's worth it. We have two! I'm sure if you have deal with peanut allergies you are cringing at this point. But, we are fortunate to be okay in that department. Dairy, however, is always at least somewhat of an issue. But, his beloved "butter" is good and we are happy campers.
Jack eats at least two peanut butter sandwiches a day - most often for breakfast and before bed. Who am I to fight? I'm just glad the kid is EATING. He is still eating popsicles daily. Luckily we found a brand that isn't so awful for him. I don't fight that one, either. Again, it's liquid - albeit in a frozen state, but hydration nonetheless. And, the nice thing is, he can have either a drink of juice, soda, or a popsicle post-anesthesia as a liquid, so it's pretty much a guarantee that he'll go for a popsicle there. Last time there wasn't much he would take. I think we ended up with an orange popsicle, melting in the trash, and a cup of sierra mist from the little hospitality room.
When my oldest was young, I wouldn't dream of feeding her some of these things. But, when you mix reflux with sensory issues, feeding problems, and all the lovely digestive issues that can go along with curvy boys (and girls) - you take what you can get. A wise mom mentioned she gives her son high calorie foods when the cast comes off to plump him up a bit, which serves a dual purpose, really. If they get a little weight on them the week before, maybe the cast won't be outgrown so quickly and be a little more loose. Brilliant, if I do say so myself. Thanks for that gem, wise owl!
We're considering renting a Prius for this next trip. It's $45 a day through our dealer (where we got our van) and includes unlimited mileage. When I calculated the mpg for our car and took into account the cost of fuel, even after paying for the rental fee we'd still come out $50 ahead (minus any applicable insurance and or fees the dealer took out for the rental). But, I hear they're quite - um - cozy! And, if you haven't met us, Jack's Daddy is 6'10". Cozy = clown car for him.
Not much else is new around our parts. We acquired an old (not quite antique) oak dresser this week that was posted on Freecycle. And, if you don't know what Freecycle is, I feel sorry for you! It's a yahoo group where you can post things you want and things you no longer want, the one caveat being that the item is free for the taking, no sales allowed. It's a great idea to keep unwanted goods out of the landfills, something we strive to do in our home with having such a large family (and corresponding carbon footprint). It's rare that I am on the receiving end of a Freecycle. Usually it's my fast and easy way of getting rid of stuff we no longer need, use, or want. But, this time I stumbled upon a post in time to actually get the item and it was a great piece. A little TLC and hopefully it will go in Jack's room by the time he's ready to sleep alone.
His favorite food is a circle-cut peanut butter sandwich. If you are a mom, and you haven't discovered the Pampered Chef circle cutter, as it is affectionately known in my house, look it up. It's worth it. We have two! I'm sure if you have deal with peanut allergies you are cringing at this point. But, we are fortunate to be okay in that department. Dairy, however, is always at least somewhat of an issue. But, his beloved "butter" is good and we are happy campers.
Jack eats at least two peanut butter sandwiches a day - most often for breakfast and before bed. Who am I to fight? I'm just glad the kid is EATING. He is still eating popsicles daily. Luckily we found a brand that isn't so awful for him. I don't fight that one, either. Again, it's liquid - albeit in a frozen state, but hydration nonetheless. And, the nice thing is, he can have either a drink of juice, soda, or a popsicle post-anesthesia as a liquid, so it's pretty much a guarantee that he'll go for a popsicle there. Last time there wasn't much he would take. I think we ended up with an orange popsicle, melting in the trash, and a cup of sierra mist from the little hospitality room.
When my oldest was young, I wouldn't dream of feeding her some of these things. But, when you mix reflux with sensory issues, feeding problems, and all the lovely digestive issues that can go along with curvy boys (and girls) - you take what you can get. A wise mom mentioned she gives her son high calorie foods when the cast comes off to plump him up a bit, which serves a dual purpose, really. If they get a little weight on them the week before, maybe the cast won't be outgrown so quickly and be a little more loose. Brilliant, if I do say so myself. Thanks for that gem, wise owl!
We're considering renting a Prius for this next trip. It's $45 a day through our dealer (where we got our van) and includes unlimited mileage. When I calculated the mpg for our car and took into account the cost of fuel, even after paying for the rental fee we'd still come out $50 ahead (minus any applicable insurance and or fees the dealer took out for the rental). But, I hear they're quite - um - cozy! And, if you haven't met us, Jack's Daddy is 6'10". Cozy = clown car for him.
Not much else is new around our parts. We acquired an old (not quite antique) oak dresser this week that was posted on Freecycle. And, if you don't know what Freecycle is, I feel sorry for you! It's a yahoo group where you can post things you want and things you no longer want, the one caveat being that the item is free for the taking, no sales allowed. It's a great idea to keep unwanted goods out of the landfills, something we strive to do in our home with having such a large family (and corresponding carbon footprint). It's rare that I am on the receiving end of a Freecycle. Usually it's my fast and easy way of getting rid of stuff we no longer need, use, or want. But, this time I stumbled upon a post in time to actually get the item and it was a great piece. A little TLC and hopefully it will go in Jack's room by the time he's ready to sleep alone.
Friday, July 11, 2008
Early Intervention
EI was here this morning to fill out paperwork. We have a physical therapist and - now I can't remember - someone who does a global assessment. That's happening in a couple weeks.
I'm so frustrated with this process. Apparently, our EI is on a sliding scale. So, in order for Jack to receive therapy through them, we would pay $180 a month. The won't be able to determine how many visits per month until after the formal evaluation. Our co-pay with insurance is $20 a visit and we have some annual limit that basically doesn't amount to anything.
And, while checking on the coverage for PT, I looked at our orthotics coverage again. The brace that our doctor uses, when we are finally finished with casting, is about $2800. Our max benefit per year is $2500, leaving us with $300 out of pocket for every brace he has made, plus our copay of 10%, which would be another $280. So, $580 for the first brace each year and another $2800 out of pocket if he should need another one.
While they were here, the EI specialist mentioned that our state insurance can help us with things, even if we have medical insurance. Great! Where do we sign up?
Oh - wait - it's on a sliding scale, too. And, you don't have enough in medical bills each month to qualify.
Here's the carrot - run, run, run - psych! Nevermind.
Which reminds me...
The NF Center at Children's will not schedule our appointment and it's getting ridiculous. They want a letter and office notes from his doctor. We had it faxed the same day. No one seems to be able to find anything, and cannot schedule until they have the letter. Um. It's a DIAGNOSTIC EVALUATION. Why do you need his office visit notes? Do you not take a history when we get there, regardless???
The insurance system in this country is a joke - both private and public. The medical community is freaking impossible to navigate. And, God forbid someone who works as a receptionist and schedules appointments for a living can ever do their job.
I'm so frustrated with this process. Apparently, our EI is on a sliding scale. So, in order for Jack to receive therapy through them, we would pay $180 a month. The won't be able to determine how many visits per month until after the formal evaluation. Our co-pay with insurance is $20 a visit and we have some annual limit that basically doesn't amount to anything.
And, while checking on the coverage for PT, I looked at our orthotics coverage again. The brace that our doctor uses, when we are finally finished with casting, is about $2800. Our max benefit per year is $2500, leaving us with $300 out of pocket for every brace he has made, plus our copay of 10%, which would be another $280. So, $580 for the first brace each year and another $2800 out of pocket if he should need another one.
While they were here, the EI specialist mentioned that our state insurance can help us with things, even if we have medical insurance. Great! Where do we sign up?
Oh - wait - it's on a sliding scale, too. And, you don't have enough in medical bills each month to qualify.
Here's the carrot - run, run, run - psych! Nevermind.
Which reminds me...
The NF Center at Children's will not schedule our appointment and it's getting ridiculous. They want a letter and office notes from his doctor. We had it faxed the same day. No one seems to be able to find anything, and cannot schedule until they have the letter. Um. It's a DIAGNOSTIC EVALUATION. Why do you need his office visit notes? Do you not take a history when we get there, regardless???
The insurance system in this country is a joke - both private and public. The medical community is freaking impossible to navigate. And, God forbid someone who works as a receptionist and schedules appointments for a living can ever do their job.
Thursday, July 10, 2008
Heeeere we go...
Tomorrow morning someone from the school district is coming to evaluate Jack for therapy/therapies. I've avoided this for a year now. I think scheduling the appointment somehow validates his condition as a longterm, chronic issue and I wasn't ready to admit to that. We had all our eggs in the casting basket, it was the only way to get through the financial and emotional stress of it, I imagine. But, now I'm ready. I think.
I'm nervous and anxious and a little nauseous thinking about it. There's a whole plethora of changes and upheaval around here these days and I need some grounding. I feel like I'm floating and nothing is certain, so I have to pull the reigns and get control back. Hopefully therapy will do that - being proactive is always good.
We're on the look out for a Thomas toddler bed, if anyone knows where we can find one at a good price. There's one in Lake St. Louis, but that's a heck of a drive. We are selling some things on Craiglist right now in preparation for the next casting and his birthday and drove to South City last night. Just that hour or so in the car has rubbed his hips raw again. So, LSL is definitely out. (It's the shaped train toddler bed, not the cheapy plastic one - it's a big thing with a built-in toybox). We're also on the lookout for a train table - would love Brio or an activity table from PBK. We've come to realize that these tables are perfect for kids in casts. Their mobility is challenged as far as balance and bending at the waist, so anything that brings toys up to his level is perfect. I was lamenting the fact that my Grandpa isn't here with us, recently at my Aunt's house. He would have built Jack *the best* train table. :(
Miss you, Grandpa. Every day.
I'm nervous and anxious and a little nauseous thinking about it. There's a whole plethora of changes and upheaval around here these days and I need some grounding. I feel like I'm floating and nothing is certain, so I have to pull the reigns and get control back. Hopefully therapy will do that - being proactive is always good.
We're on the look out for a Thomas toddler bed, if anyone knows where we can find one at a good price. There's one in Lake St. Louis, but that's a heck of a drive. We are selling some things on Craiglist right now in preparation for the next casting and his birthday and drove to South City last night. Just that hour or so in the car has rubbed his hips raw again. So, LSL is definitely out. (It's the shaped train toddler bed, not the cheapy plastic one - it's a big thing with a built-in toybox). We're also on the lookout for a train table - would love Brio or an activity table from PBK. We've come to realize that these tables are perfect for kids in casts. Their mobility is challenged as far as balance and bending at the waist, so anything that brings toys up to his level is perfect. I was lamenting the fact that my Grandpa isn't here with us, recently at my Aunt's house. He would have built Jack *the best* train table. :(
Miss you, Grandpa. Every day.
Thursday, June 26, 2008
A Month To Two
It's just over a month until Jack's second birthday, and I find myself being a little weepy. And, no, not because he's my "baby" and he's growing up.
I think part of it is a release from all the stress of the last year. We thought he'd be casted for a year (coming up on the anniversary, just passed the anniversary of his diagnosis) and we'd be done. We thought, one year will suck, but then it'll be OVER.
It's not.
No end in sight.
No promise of cure.
A HUGE disappointment.
I feel angry, resentful, and flat out sad that this didn't work. I still have a glimmer of hope that I'm holding on to. But, the knowledge that this is "buying time" for our son is sick and wrong.
At a time when I would typically be a flurry of activity, planning a birthday party, I'm agonizing over the littlest things. I can hardly think about his birthday without wondering what his second year of life will be like.
I want to have a party that he'll love. I want it to be the BEST day for him. Because, frankly, he's been through more this year than is ever fair - especially for a toddler.
I know there are kids battling cancer. I know there are kids lost in accidents and drownings and all kinds of terrible tragedies. But that doesn't make this road any easier.
This year has been tumultuous, to say the least. We went from thinking he might have surgery to correct his curve, to learning the graphic details of what an internal support system would mean for him and instead turning our efforts instead toward casting.
We went from thinking this was a purely orthopaedic condition to learning that it can be life-threatening, that it can cause death in childhood. I remember reading websites about infantile scoliosis and seeing the pictures. I remember a little girl at Shriner's and I remember thinking, "Wow - she must have a lot wrong with her."
She didn't. It was just this.
I get so frustrated when people say, "Oh, yeah - my cousin/sister/aunt/daughter had that." No, they didn't. They had adolescent scoliosis and had a fighting chance. They were nearly DONE growing, not 10 months old with 17 to 18 years of battling this condition ahead of them - trying your damnedest to keep their precious internal organs from being crushed by their spine as they form and grow.
NO ONE TOLD US, EITHER!
I wonder what his childhood will look like.
I wonder if he will be outwardly different, and worry for him.
I already ache deeply when someone comments about him crawling funny or that he doesn't have good balance. Innocent comments become painful reminders that he is not the same as other two year olds.
So, today, when I should be deciding what menu to have, sending out invitations, planning a celebration of two years in his life - I am reflecting and afraid to look to the future because it is so uncertain. Sure, all of ours are. I get that. But, today I cannot decide between a farm party or his newest love, "Memo, fishy movie," because I keep wondering how many birthdays we'll have together.
Dramatic?
Maybe.
Walk a mile in my shoes.
I am strong and fight for him 95% of the time. We research until our eyes cross. We call and call and call and leave voicemails that are never returned. We drive countless hours, through storms and sun, with rising gas prices and financial strain, and sometimes, once in a while, we cry and say, "Why me? Why him?"
And, so, today, I will call the Neurofibromatosis clinic at Children's and schedule the appointment I have been dreading for weeks. Because his cast will only be off for less than a week, the week of his second birthday we will spend the day in a genetic disorders clinic finding out if the bump under the skin of is neck is a tumor. We will try to find some answers that we really don't have questions for. And, really, we don't want those either.
I think part of it is a release from all the stress of the last year. We thought he'd be casted for a year (coming up on the anniversary, just passed the anniversary of his diagnosis) and we'd be done. We thought, one year will suck, but then it'll be OVER.
It's not.
No end in sight.
No promise of cure.
A HUGE disappointment.
I feel angry, resentful, and flat out sad that this didn't work. I still have a glimmer of hope that I'm holding on to. But, the knowledge that this is "buying time" for our son is sick and wrong.
At a time when I would typically be a flurry of activity, planning a birthday party, I'm agonizing over the littlest things. I can hardly think about his birthday without wondering what his second year of life will be like.
I want to have a party that he'll love. I want it to be the BEST day for him. Because, frankly, he's been through more this year than is ever fair - especially for a toddler.
I know there are kids battling cancer. I know there are kids lost in accidents and drownings and all kinds of terrible tragedies. But that doesn't make this road any easier.
This year has been tumultuous, to say the least. We went from thinking he might have surgery to correct his curve, to learning the graphic details of what an internal support system would mean for him and instead turning our efforts instead toward casting.
We went from thinking this was a purely orthopaedic condition to learning that it can be life-threatening, that it can cause death in childhood. I remember reading websites about infantile scoliosis and seeing the pictures. I remember a little girl at Shriner's and I remember thinking, "Wow - she must have a lot wrong with her."
She didn't. It was just this.
I get so frustrated when people say, "Oh, yeah - my cousin/sister/aunt/daughter had that." No, they didn't. They had adolescent scoliosis and had a fighting chance. They were nearly DONE growing, not 10 months old with 17 to 18 years of battling this condition ahead of them - trying your damnedest to keep their precious internal organs from being crushed by their spine as they form and grow.
NO ONE TOLD US, EITHER!
I wonder what his childhood will look like.
I wonder if he will be outwardly different, and worry for him.
I already ache deeply when someone comments about him crawling funny or that he doesn't have good balance. Innocent comments become painful reminders that he is not the same as other two year olds.
So, today, when I should be deciding what menu to have, sending out invitations, planning a celebration of two years in his life - I am reflecting and afraid to look to the future because it is so uncertain. Sure, all of ours are. I get that. But, today I cannot decide between a farm party or his newest love, "Memo, fishy movie," because I keep wondering how many birthdays we'll have together.
Dramatic?
Maybe.
Walk a mile in my shoes.
I am strong and fight for him 95% of the time. We research until our eyes cross. We call and call and call and leave voicemails that are never returned. We drive countless hours, through storms and sun, with rising gas prices and financial strain, and sometimes, once in a while, we cry and say, "Why me? Why him?"
And, so, today, I will call the Neurofibromatosis clinic at Children's and schedule the appointment I have been dreading for weeks. Because his cast will only be off for less than a week, the week of his second birthday we will spend the day in a genetic disorders clinic finding out if the bump under the skin of is neck is a tumor. We will try to find some answers that we really don't have questions for. And, really, we don't want those either.
Monday, June 23, 2008
Determining what is best...
When I spoke with the doctor's assistant in the Salt Lake, something she said stuck in my mind. It was one of those passing comments that don't really hit you right away, but has a slow burn that builds over time. We took some time to consider all the factors, listening to the things other trusted friends and family have said, and made the decision not to go to Salt Lake.
Basically, his assistant said that Dr. D is trained in the same method as Dr. K and wouldn't really have anything else to offer. (Which we knew). And, the more I talk to the other B'ham girls, the more I realize that the things he's done to change the cast aren't impacting the results. Dr. K in b'ham has "cured" other kids with these casts, too. He's been doing this for years, and trusts our input as well. We love him, his staff, the hospital, the area. We know this system. It has served us well.
Dr. D, great as he may be, would end up costing us significantly more money in travel, though the care would be free. However, we always run the risk of hitting another vax snag like in Chicago. But, the travel would be awful. They want us there early in the AM for a clinic appointment, so we'd have to fly out and stay overnight an extra day. Then, the clinic day and another overnight. Then casting day they require you to stay and come back to the clinic the next day for any trimming. So, three nights, four very long days. That's a huge problem for us, particularly in regard to leaving the girls for that long (and bringing them is so insanely cost-prohibitive.)
We also found out that when Miss Mehta comes to Salt Lake, she's not actually casting any of the kids - she's just going to be there as a guest. So, that's out.
And - over the last month we've been appealing the decision to have Dr. K (b'ham) considered in network and JUST got that approved. So, now our cost of going to B'ham is considerably less since the casting won't be out of pocket there.
John added a very valid point - he likes the control of going to Birmingham. It's our car, our decision if we need to stop or go on (transportation-wise), we know where the restaurants are and where the hotels are that we like. We're finally learning our way around. We love the staff there. We know how the process goes. They pad the cast the way we like. No standing in line at airport security trying to comfort a cranky or sleepy post-anesthesia baby. No rushing to return a rental car, navigating the return desk, the shuttles to the airport with bags and a stroller and car seat and aforementioned cranky post-anesthesia baby in tow.
Flying with him post-anesthesia might be hard, particularly. OR changes happen all the time and casts are outgrown all the time. Even if we COULD afford a cheap southwest flight (right now they're $385 per person, round trip X 3) and three nights in a hotel and four days of meals - which, really, that's pushing it, financially - if we had to change a flight at the last minute, we'd have to upgrade to a full fare for all three of us. It would be a LOT more if we had a schedule change.
And, if we need to get to Birmingham, it's a matter of just getting in the car and driving there in one day. OR times change. We got bumped and flipped more than once in the Shriners network. Communication can be difficult, delayed, and sometimes nonexistant (we were supposed to have been called back "tomorrow" countless times - including this last week when, once again, we never heard back. That's not adequate care, in my opinion. When you have a child with ANY medical issue, you need answers as quickly as possible. If someone takes three, four, six weeks to get back to you after repeated voicemails - that's not right.)
Basically, the way DH put it - it's a lot of extra expense, stress, travel, and inconvenience - and for what? Is there any true added benefit? It IS essentially the same treatment. (Talking with the other Birmingham casting families has confirmed this for me - that he HAS done over the shoulder casts and WOULD if we really wanted it - he's doing them on a casting-friend's son right now.)
I just kind of feel like I wanted this so badly, but now - thanks, but no thanks. Dr. K doesn't think that this is the end of casting for Jack anymore - he's willing to keep on trucking, he's still getting results and correction - and it's not like Dr. D feels so confident in Jack's case that he could do anything better for us. So, I think we'll stay with the team we've come to know and care for, who hopefully feels the same way about us.
Basically, his assistant said that Dr. D is trained in the same method as Dr. K and wouldn't really have anything else to offer. (Which we knew). And, the more I talk to the other B'ham girls, the more I realize that the things he's done to change the cast aren't impacting the results. Dr. K in b'ham has "cured" other kids with these casts, too. He's been doing this for years, and trusts our input as well. We love him, his staff, the hospital, the area. We know this system. It has served us well.
Dr. D, great as he may be, would end up costing us significantly more money in travel, though the care would be free. However, we always run the risk of hitting another vax snag like in Chicago. But, the travel would be awful. They want us there early in the AM for a clinic appointment, so we'd have to fly out and stay overnight an extra day. Then, the clinic day and another overnight. Then casting day they require you to stay and come back to the clinic the next day for any trimming. So, three nights, four very long days. That's a huge problem for us, particularly in regard to leaving the girls for that long (and bringing them is so insanely cost-prohibitive.)
We also found out that when Miss Mehta comes to Salt Lake, she's not actually casting any of the kids - she's just going to be there as a guest. So, that's out.
And - over the last month we've been appealing the decision to have Dr. K (b'ham) considered in network and JUST got that approved. So, now our cost of going to B'ham is considerably less since the casting won't be out of pocket there.
John added a very valid point - he likes the control of going to Birmingham. It's our car, our decision if we need to stop or go on (transportation-wise), we know where the restaurants are and where the hotels are that we like. We're finally learning our way around. We love the staff there. We know how the process goes. They pad the cast the way we like. No standing in line at airport security trying to comfort a cranky or sleepy post-anesthesia baby. No rushing to return a rental car, navigating the return desk, the shuttles to the airport with bags and a stroller and car seat and aforementioned cranky post-anesthesia baby in tow.
Flying with him post-anesthesia might be hard, particularly. OR changes happen all the time and casts are outgrown all the time. Even if we COULD afford a cheap southwest flight (right now they're $385 per person, round trip X 3) and three nights in a hotel and four days of meals - which, really, that's pushing it, financially - if we had to change a flight at the last minute, we'd have to upgrade to a full fare for all three of us. It would be a LOT more if we had a schedule change.
And, if we need to get to Birmingham, it's a matter of just getting in the car and driving there in one day. OR times change. We got bumped and flipped more than once in the Shriners network. Communication can be difficult, delayed, and sometimes nonexistant (we were supposed to have been called back "tomorrow" countless times - including this last week when, once again, we never heard back. That's not adequate care, in my opinion. When you have a child with ANY medical issue, you need answers as quickly as possible. If someone takes three, four, six weeks to get back to you after repeated voicemails - that's not right.)
Basically, the way DH put it - it's a lot of extra expense, stress, travel, and inconvenience - and for what? Is there any true added benefit? It IS essentially the same treatment. (Talking with the other Birmingham casting families has confirmed this for me - that he HAS done over the shoulder casts and WOULD if we really wanted it - he's doing them on a casting-friend's son right now.)
I just kind of feel like I wanted this so badly, but now - thanks, but no thanks. Dr. K doesn't think that this is the end of casting for Jack anymore - he's willing to keep on trucking, he's still getting results and correction - and it's not like Dr. D feels so confident in Jack's case that he could do anything better for us. So, I think we'll stay with the team we've come to know and care for, who hopefully feels the same way about us.
Wednesday, June 18, 2008
A Plea for Airline Miles/Reward Credits
UPDATE******** CHANGE OF PLANS - SEE JUNE 23 POST ***********
Because we're going to Salt Lake!!!!!!!!!!!!!!!!!
We were floored - positively shocked - to get the approval letter yesterday. Salt Lake City is home to THE most experienced early intervention doctor. We are so blessed to be invited to his practice.
While there are charity organizations like Angel Flights that transport patients, they only allow for one parent to accompany the child. I'm sure you can understand the concern with having your child undergoing medical treatment and not being able to both be there should something arise. Also, these planes are often small, seating only two people and their luggage. One such flight was in the news this week when it crashed, killing a two year old obtaining a similar treatment on her legs at an out of state hospital.
While we are blessed to typically have the means to be able to pay for a Southwest flight, there are huge penalties when a flight is changed at the last minute. Many times we cannot book the flight until we know that the OR date is firm, sometimes even not knowing if he will outgrow a cast until the week it is suddenly too small. Also, if he has an anesthesia reaction, we may be required to stay an additional day in the hospital. Missing a flight like that would require us to upgrade a flight to premium, costing upwards of $600 - $800 for the change. Also, while Jackson can technically fly free until his birthday, that is next month. So, we will need 3 seats per visit, round trip.
Flying to and from Salt Lake, thankfully, is a plentiful thing on airlines such as American and Southwest. Southwest's Rapid Rewards flights are transferrable and there are no penalties. They can be booked on any flight, there are no blackouts or restrictions, and we can change the flight up to the day of.
These are precious to us and provide far more than the worth of the flight. I know some of you may not travel often, but for those who do - would you please consider signing up for a free Rapid Rewards account and flying Southwest? It will save your company/client money because the flights are so much more affordable, and you can obtain a free flight just by taking 8 round trips.
Similarly, if anyone has existing reward flights or even miles from another carrier, those would be so greatly appreciated. As Jackson turns two, and his spine becomes less flexible and his growth slows, we are coming upon a very difficult time where every day, every cast is precious. Each one must be applied at the very best, most experienced facility, by the most experienced person or we risk not only not having correction, but also having him regress further like he has. This is buying our child valuable time to grow and have his heart and lungs function properly - it is literally adding years to his life.
Please let us know if there is anything you are able to do. We are also always in need of hotel room loyalty points/rewards. Ronald McDonald House is a fantastic charity, but they cannot guarantee a room. They put you on a waiting list and will let you know if a bed is available the day of your visit. Naturally, we cannot wait until that day to know if there will be a place to sleep, so we have to book rooms regardless, and, again, there are penalties for last minute changes and cancellations.
And, always, thank you for your continued prayers and thoughts along this ever-changing journey.
Because we're going to Salt Lake!!!!!!!!!!!!!!!!!
We were floored - positively shocked - to get the approval letter yesterday. Salt Lake City is home to THE most experienced early intervention doctor. We are so blessed to be invited to his practice.
While there are charity organizations like Angel Flights that transport patients, they only allow for one parent to accompany the child. I'm sure you can understand the concern with having your child undergoing medical treatment and not being able to both be there should something arise. Also, these planes are often small, seating only two people and their luggage. One such flight was in the news this week when it crashed, killing a two year old obtaining a similar treatment on her legs at an out of state hospital.
While we are blessed to typically have the means to be able to pay for a Southwest flight, there are huge penalties when a flight is changed at the last minute. Many times we cannot book the flight until we know that the OR date is firm, sometimes even not knowing if he will outgrow a cast until the week it is suddenly too small. Also, if he has an anesthesia reaction, we may be required to stay an additional day in the hospital. Missing a flight like that would require us to upgrade a flight to premium, costing upwards of $600 - $800 for the change. Also, while Jackson can technically fly free until his birthday, that is next month. So, we will need 3 seats per visit, round trip.
Flying to and from Salt Lake, thankfully, is a plentiful thing on airlines such as American and Southwest. Southwest's Rapid Rewards flights are transferrable and there are no penalties. They can be booked on any flight, there are no blackouts or restrictions, and we can change the flight up to the day of.
These are precious to us and provide far more than the worth of the flight. I know some of you may not travel often, but for those who do - would you please consider signing up for a free Rapid Rewards account and flying Southwest? It will save your company/client money because the flights are so much more affordable, and you can obtain a free flight just by taking 8 round trips.
Similarly, if anyone has existing reward flights or even miles from another carrier, those would be so greatly appreciated. As Jackson turns two, and his spine becomes less flexible and his growth slows, we are coming upon a very difficult time where every day, every cast is precious. Each one must be applied at the very best, most experienced facility, by the most experienced person or we risk not only not having correction, but also having him regress further like he has. This is buying our child valuable time to grow and have his heart and lungs function properly - it is literally adding years to his life.
Please let us know if there is anything you are able to do. We are also always in need of hotel room loyalty points/rewards. Ronald McDonald House is a fantastic charity, but they cannot guarantee a room. They put you on a waiting list and will let you know if a bed is available the day of your visit. Naturally, we cannot wait until that day to know if there will be a place to sleep, so we have to book rooms regardless, and, again, there are penalties for last minute changes and cancellations.
And, always, thank you for your continued prayers and thoughts along this ever-changing journey.
Monday, June 16, 2008
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