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?
Friday, August 22, 2008
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.
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