First, I want to say thank you all for your comments, emails, and phone calls. Really. I've got "my mind right" now and feel much better. It was somewhat theraputic to confess how I feel sometimes.
The last few days have been busy for me. Zach and I made the big decision to apply for treatment at yet another out of state clinic with a GI doctor that is world known for his treatment of children who are "no foods".
Its a big step. Huge. I think I have finally accepted that we need to see the best of the best in order to get Lucy the help she needs so that she can thrive. Not that we don't love our current GI, Dr. G, its just that his experience with children like Lucy is limited to a very small percentage. That may just not be good enough. Of course, there is the risk we have nothing more to gain and that this new doctor would have nothing more to offer us, but we are hopeful and that is enough to make us go. If we didn't try, we may regret it down the road if things continue to slide downhill for Lucy.
I called on Monday and the woman on the phone said it sounded as though we would be a good fit for this doctor. He's currently booking through June and once all of our paperwork and records are in they will give us an appointment. Hopefully this all goes smooth, we are accepted, insurance approved, and on our way come summertime.
I am also still working to get our DME switched over to a new company. It is a long process that is a major pain in the behind. Between the application process for the new GI and the process to get in with a new DME, I spend my entire morning on the phone at this point!
To top it off I found myself with an ugly earache by yesterday morning. I thought I could push through it and it would go away, but it didn't. So last night my father in law came over and watched the kiddos so that I could run to a clinic to get it checked out. I ended up having an ear infection with a lot of fluid so I needed antibiotics. I haven't had an infection in like 8 years! I forgot how much those hurt! Of course, it may just be that I am a big huge baby....
Lucy is doing alright. Nothing new. We are still waiting on insurance approval for the antibiotics she needs to treat bacterial overgrowth. Good thing we didn't need that in a hurry! Good grief!
As always, thank you for checking in on Lucy!
Thursday, March 31, 2011
Friday, March 25, 2011
The Big Let Down
It always takes me a few days. I walk into these appointments and tests as stoic as is possible.
I am the rock.
I am the advocate.
I am the mama bear.
Its my job to serve as her strength.
I cover her eyes when they take her blood. I help hold her down when they cover her face with that mask. I promise her its almost over. Just one more appointment. I hear the news, shake hands, thank them for their time, bundle up my daughter, and go home promising her a new dolly or stuffed animal from the toy store for being a brave girl. I hold her hand so that she can soldier on. I go home and read for hours on the internet searching for answers.
It isn't until everyone is in bed for the night that I sit down and feel that big let down. The reality that its not getting better and the opportunity for things to get better is quickly slipping away. I am scared for her and devastated that I can't fix this for her. Did I just say that out loud? I want there to be hope that things will be normal.
When the house gets quiet I remember for just a moment that I am living this nightmare too.
The human body needs a small intestine. There are interventions, options, solutions if it were any other part of the GI system. But for us there are shrugs and slim chances. The only doctors experienced in her health problems are hundreds of miles away. The ceiling could come crashing in at any moment and who could help?
Sure, things could be worse. I absolutely know others who deal with far more than I could fathom getting out of bed with. I admire them for their courageous fights and wish I were that strong too. I pray that God gives me that strength everyday.
And He does. He does even when I doubt that He will.
I feel sad, worried, and terrified but I'm not giving up. I know that we have strength here on earth and up above that will keep us going together. Say it again. Lather. Rinse. Repeat. I have to remind myself of that more often. Over and over and over again.
I am the rock.
I am the advocate.
I am the mama bear.
Its my job to serve as her strength.
I cover her eyes when they take her blood. I help hold her down when they cover her face with that mask. I promise her its almost over. Just one more appointment. I hear the news, shake hands, thank them for their time, bundle up my daughter, and go home promising her a new dolly or stuffed animal from the toy store for being a brave girl. I hold her hand so that she can soldier on. I go home and read for hours on the internet searching for answers.
It isn't until everyone is in bed for the night that I sit down and feel that big let down. The reality that its not getting better and the opportunity for things to get better is quickly slipping away. I am scared for her and devastated that I can't fix this for her. Did I just say that out loud? I want there to be hope that things will be normal.
When the house gets quiet I remember for just a moment that I am living this nightmare too.
The human body needs a small intestine. There are interventions, options, solutions if it were any other part of the GI system. But for us there are shrugs and slim chances. The only doctors experienced in her health problems are hundreds of miles away. The ceiling could come crashing in at any moment and who could help?
Sure, things could be worse. I absolutely know others who deal with far more than I could fathom getting out of bed with. I admire them for their courageous fights and wish I were that strong too. I pray that God gives me that strength everyday.
And He does. He does even when I doubt that He will.
I feel sad, worried, and terrified but I'm not giving up. I know that we have strength here on earth and up above that will keep us going together. Say it again. Lather. Rinse. Repeat. I have to remind myself of that more often. Over and over and over again.
Tuesday, March 22, 2011
Doctor Appointment
Lucy had her appointment with Dr. G as well as our nutritionist, just to check in on things and to see how we are progressing.
Her weight came in at over 28.5 lbs! I was thoroughly impressed, however the nutritionist was NOT. She pointed out the fact that Lucy is still down from her weight in November of last year. The nutritionist still feels that there is much to be desired in the nutrition department for Lucy. There just isn't much that we can do about it so, instead, Dr. G and I celebrated the weight gain!
Dr. G thinks that Lucy may have a bacterial overgrowth of the intestines causing a lot of bloating and diarrhea. When things move SO slowly through the intestine, bacteria levels build up and over populate which causes a lot of problems. Its almost a given that this sort of thing happens to a person with a small intestine moving as slowly as Lu's. We are going to try to treat this overgrowth with a rotation of antibiotics for several months. I am a bit nervous about whether or not she will tolerate that, so I am crossing my fingers.
Next, we moved onto discuss Lucy's pain issues. It's become a daily issue that wears her down and out. Dr. G explained that Lucy may have Visceral Hyperalgesia which can happen in children with severe motility disorders. Basically, the very stretching and movements of the GI tract that the rest of us are unaware are happening in our bodies, cause, what the brain perceives, as pain. He couldn't offer much in the way of treatment, other than to continue venting Lucy's stomach through her tube to prevent air buildup and formula backup. I'm not terribly pleased with that offer, so I have a good feeling this is an issue we will be revisiting down the road.
We also discussed some of Lucy's psychological issues in dealing with all the pain, formula only diet, and constant doctors appointments and tests. He referred us to the behavioral psych program at the hospital that is dedicated specifically to helping with children who are struggling to deal with medical conditions. Dr. G felt that Lucy really needs to start seeing someone that can help her to communicate her pain, learn how to cope with that pain, and all the anxiety and anger that comes from being a kid in Lucy's situation. It's certainly depressing to know that your child's burdens have become big enough that she needs help handling it all. She'll be okay though and we will help her through it. I would much rather build good habits for handling anxiety and anger now, then wait until shes older, depressed, and set into a way of lashing out.
Lastly, we discussed our hopeful trip to Ohio. Dr. G said he received notice that our case is to be reviewed, but nothing further than that. He's eager to hear back from Ohio for multiple reasons, one being that he wants to know whether or not it would be useful to operate on Lucy's small intestine. Hopefully, we will hear soon.
Thank you for checking in on Lucy!!
Her weight came in at over 28.5 lbs! I was thoroughly impressed, however the nutritionist was NOT. She pointed out the fact that Lucy is still down from her weight in November of last year. The nutritionist still feels that there is much to be desired in the nutrition department for Lucy. There just isn't much that we can do about it so, instead, Dr. G and I celebrated the weight gain!
Dr. G thinks that Lucy may have a bacterial overgrowth of the intestines causing a lot of bloating and diarrhea. When things move SO slowly through the intestine, bacteria levels build up and over populate which causes a lot of problems. Its almost a given that this sort of thing happens to a person with a small intestine moving as slowly as Lu's. We are going to try to treat this overgrowth with a rotation of antibiotics for several months. I am a bit nervous about whether or not she will tolerate that, so I am crossing my fingers.
Next, we moved onto discuss Lucy's pain issues. It's become a daily issue that wears her down and out. Dr. G explained that Lucy may have Visceral Hyperalgesia which can happen in children with severe motility disorders. Basically, the very stretching and movements of the GI tract that the rest of us are unaware are happening in our bodies, cause, what the brain perceives, as pain. He couldn't offer much in the way of treatment, other than to continue venting Lucy's stomach through her tube to prevent air buildup and formula backup. I'm not terribly pleased with that offer, so I have a good feeling this is an issue we will be revisiting down the road.
We also discussed some of Lucy's psychological issues in dealing with all the pain, formula only diet, and constant doctors appointments and tests. He referred us to the behavioral psych program at the hospital that is dedicated specifically to helping with children who are struggling to deal with medical conditions. Dr. G felt that Lucy really needs to start seeing someone that can help her to communicate her pain, learn how to cope with that pain, and all the anxiety and anger that comes from being a kid in Lucy's situation. It's certainly depressing to know that your child's burdens have become big enough that she needs help handling it all. She'll be okay though and we will help her through it. I would much rather build good habits for handling anxiety and anger now, then wait until shes older, depressed, and set into a way of lashing out.
Lastly, we discussed our hopeful trip to Ohio. Dr. G said he received notice that our case is to be reviewed, but nothing further than that. He's eager to hear back from Ohio for multiple reasons, one being that he wants to know whether or not it would be useful to operate on Lucy's small intestine. Hopefully, we will hear soon.
Thank you for checking in on Lucy!!
Saturday, March 19, 2011
Thats Better
Today was a MUCH better day, as compared to earlier in the week!
Zachary lost his first teeth last night!! His front two bottom teeth just fell right out while he was eating his dinner. What a surprise!! Zachary turns 8 this summer and has been SO patiently waiting to finally lose just one. He was so excited he created a questionnaire for the tooth fairy to fill out, asking what her name was, what she looked like, where she was from, and a few other things. So apparently our tooth fairy is named Frank and hails from Japan (it was all I could think of!). Frank brought Zachary a small set of Star Wars action figures. He showed off the space in his mouth to all his buddies at TaeKwonDo this morning!
Lucy is feeling real good today. She complained her belly hurt this morning but was up and running around by afternoon. The weather was so nice that her and Zachary played in the yard all day! Zachary ended up with a sunburn though. We need to stock up on sunblock already!
Zachary lost his first teeth last night!! His front two bottom teeth just fell right out while he was eating his dinner. What a surprise!! Zachary turns 8 this summer and has been SO patiently waiting to finally lose just one. He was so excited he created a questionnaire for the tooth fairy to fill out, asking what her name was, what she looked like, where she was from, and a few other things. So apparently our tooth fairy is named Frank and hails from Japan (it was all I could think of!). Frank brought Zachary a small set of Star Wars action figures. He showed off the space in his mouth to all his buddies at TaeKwonDo this morning!
Lucy is feeling real good today. She complained her belly hurt this morning but was up and running around by afternoon. The weather was so nice that her and Zachary played in the yard all day! Zachary ended up with a sunburn though. We need to stock up on sunblock already!
Thursday, March 17, 2011
A Long Hard Day
Yesterday was a disaster. It was a bad day of epic proportions.
Things have recently been going a bit downhill with Lucy. Shes been bloating up, complaining of "shooting fings" in her belly, staying up at night, and regularly saying her "legs are breaking". The night before last she was laid out on the floor, toes pointed, arching her back, and screaming that her legs were hurting her so badly.
When her pain starts to get out of control and starts wearing on day after day, Lucy gets angry. Its like having a colicky 4 year old I swear. When you put a little kid under so much pressure, they of course, crack.
Yesterday morning, to make things worse, she got a hold of a piece of pizza. Lucy keeps a vigilant eye out for any rare opportunity to grab food and never misses it.
Within a half hour she was running to the bathroom over and over and over again. I kept her off of feeds in the hopes it would stop quickly and then started her on a homemade pedialyte solution to keep her hydrated. This poor kid must have run to the bathroom 12 or so times in a very short window of time. I felt so bad for her, but tried to explain this is why Mommy, Daddy, Dr. B, and Dr. G won't allow her to have food- we want to protect her.
She spent the rest of the day an emotional mess. It was hard. For her and for me. When she wasn't curled up in a ball in her comfy chair, she was screaming, crying, and lashing out.
She slept alright last night, so hopefully today will be a far better day.
Her appointment with Dr. G is next week and her pain issues will be the biggest concern I bring up. Hopefully, Dr. G will have some good ideas about what to do next so things can get better for Lu.
As always, thank you for checking in on Lucy!
Things have recently been going a bit downhill with Lucy. Shes been bloating up, complaining of "shooting fings" in her belly, staying up at night, and regularly saying her "legs are breaking". The night before last she was laid out on the floor, toes pointed, arching her back, and screaming that her legs were hurting her so badly.
When her pain starts to get out of control and starts wearing on day after day, Lucy gets angry. Its like having a colicky 4 year old I swear. When you put a little kid under so much pressure, they of course, crack.
Yesterday morning, to make things worse, she got a hold of a piece of pizza. Lucy keeps a vigilant eye out for any rare opportunity to grab food and never misses it.
Within a half hour she was running to the bathroom over and over and over again. I kept her off of feeds in the hopes it would stop quickly and then started her on a homemade pedialyte solution to keep her hydrated. This poor kid must have run to the bathroom 12 or so times in a very short window of time. I felt so bad for her, but tried to explain this is why Mommy, Daddy, Dr. B, and Dr. G won't allow her to have food- we want to protect her.
She spent the rest of the day an emotional mess. It was hard. For her and for me. When she wasn't curled up in a ball in her comfy chair, she was screaming, crying, and lashing out.
She slept alright last night, so hopefully today will be a far better day.
Her appointment with Dr. G is next week and her pain issues will be the biggest concern I bring up. Hopefully, Dr. G will have some good ideas about what to do next so things can get better for Lu.
As always, thank you for checking in on Lucy!
Monday, March 14, 2011
Anxiety
Once upon a while ago, before she was ours, she was crated for hours at an extended period of time and left alone. My husband saw fit to bring her home to us and she has been eternally grateful for his rescue. Lilly follows Big Zach all over the house, even waiting patiently on the bathroom rug while he showers. Shes been so enamoured with Big Zach from the start that I am afraid she'll off me in my sleep so that she can claim her stake on my half of the bed!
But since we've returned from our recent trip she's unhappy if shes not with him for even a second.
She whines at us all day, double checking the door for him when hes not here. Shes taken to messing in the house the second he leaves for work- which is very unusual for her. We tried crating her to keep her from messing in the house when we are out, but she apparently flips out in there and I am afraid she'll hurt herself. Shes just plain sad all the time unless Zach is home and it can't be healthy for her.
Whenever we go out of town we make certain to leave her here at home with my sister, who snuggles for hours on end with her nearly the entire time we are gone. We stayed away a day longer than we typically do, but I can't see the reason shes so over attached to my husband right now.
I tried to read up a little on separation anxiety in dogs with good ole' Google. Some suggestions included NOT crating her, giving her an object for comfort, toys for distraction, as well as some other things.
So we tried gating her in the kitchen today while we were out and I took the kids shopping to pick out some "lovies" for her to snuggle when we are away. We also got some chewies to help keep her entertained. The kids had a great time carefully selecting the perfect baby for Lilly!
She did great in the kitchen and so far, Lilly has spent the entire evening nuzzling her new stuffed animal- a pink round pig. She holds it in her mouth delicately and just drools all over it. Shes taken her new (now slimy and stinky) buddy everywhere!
I hope it helps keep her calm when Zach is away. I don't know much else to do. If you have tips feel free to share :)
Tuesday, March 8, 2011
I hope everybody had a good weekend! We did! It was a little low key for the first time in months. On Sunday we took the kids to the movies and saw "Rango". They really liked it! It was Lucy's very first time at the movies and she keeps asking to go back!
I haven't made much progress on finding a new DME. I have one more company to try but just haven't had the time to spare so that I can get on the phone for a few hours and get it sorted out. I am hoping to handle it today or tomorrow sometime. It would really be great if we could find a more helpful company and heck, if that company happens to charge less for her supplies that would be nice too!
Yesterday Lucy had an appointment for a physical therapy evaluation. Lucy has steadily lost her endurance over the last year or two and struggles to keep up with other children her age sometimes. Initially our doctors thought this would improve once she got a tube and her hydration and nutrition was brought up to par, however, things only got worse after the tube despite her taking in more calories than previously. She also complains pretty much daily that her "legs are breaking" and is asking for shoulder massages because her neck hurts. The whole thing is a mystery.
Our pediatrician, Dr B, wanted us to go in for a PT evaluation just to sort through and see if there was any sort of muscle weakness or anything like that going on. I didn't think so, because Lucy doesn't seem weak in the least, shes just not as active as she once was and often tires out very quickly. Shes fine to bounce around the house and play but we are still completely dependent on a stroller because the walk from the car to a store is more than she is willing to take on.
The evaluation revealed that she did have some muscle weakness, primarily in her core but her arms and legs are strong enough that she compensates fine for it. She started off the test full of energy but got more and more tired. By the end she was showing some weakness as she got tired, but was still passing.
We elected not to get physical therapy because it seemed doubtful she would gain anything more from it than she would by getting out and engaging in an organized activity like ballet.
Our appointment with the GI is set for the 22nd and I plan to talk with him about her pain issues. There may be something that can be done, there may not, but its one issue I'd like to see get worked out for her sake.
Thanks for checking in on Lucy!!
I opened up the blog for comments. I've had several people ask why it wasn't and I really couldn't come up with a good reason why. So there it is. :)
I haven't made much progress on finding a new DME. I have one more company to try but just haven't had the time to spare so that I can get on the phone for a few hours and get it sorted out. I am hoping to handle it today or tomorrow sometime. It would really be great if we could find a more helpful company and heck, if that company happens to charge less for her supplies that would be nice too!
Yesterday Lucy had an appointment for a physical therapy evaluation. Lucy has steadily lost her endurance over the last year or two and struggles to keep up with other children her age sometimes. Initially our doctors thought this would improve once she got a tube and her hydration and nutrition was brought up to par, however, things only got worse after the tube despite her taking in more calories than previously. She also complains pretty much daily that her "legs are breaking" and is asking for shoulder massages because her neck hurts. The whole thing is a mystery.
Our pediatrician, Dr B, wanted us to go in for a PT evaluation just to sort through and see if there was any sort of muscle weakness or anything like that going on. I didn't think so, because Lucy doesn't seem weak in the least, shes just not as active as she once was and often tires out very quickly. Shes fine to bounce around the house and play but we are still completely dependent on a stroller because the walk from the car to a store is more than she is willing to take on.
The evaluation revealed that she did have some muscle weakness, primarily in her core but her arms and legs are strong enough that she compensates fine for it. She started off the test full of energy but got more and more tired. By the end she was showing some weakness as she got tired, but was still passing.
We elected not to get physical therapy because it seemed doubtful she would gain anything more from it than she would by getting out and engaging in an organized activity like ballet.
Our appointment with the GI is set for the 22nd and I plan to talk with him about her pain issues. There may be something that can be done, there may not, but its one issue I'd like to see get worked out for her sake.
Thanks for checking in on Lucy!!
I opened up the blog for comments. I've had several people ask why it wasn't and I really couldn't come up with a good reason why. So there it is. :)
Friday, March 4, 2011
Darn DME
Lucy's medical supplies all come from an insurance approved Durable Medical Equipment supplier (DME). The one we have we will call "Wacko's Inc" for the purposes of internet privacy.
Wacko's Inc is ridiculous. I am on the phone with them multiple times a week for one reason or another and it is so old. They actually mark up the cost of Lucy's formula by a near 60% so its no wonder insurance costs so much. Its downright comical how poor their customer service and communication is. HOW they manage to screw up EVERY interaction we have with them I will never understand. It should all be pretty simple, right?
Need a supply reorder? Oh no. You have to call to order, then call back to make sure its correct at which time you'll discover the order wasn't placed or that it was placed for all the WRONG supplies, place order again, wait 2 days, call back and find out they are waiting for your permission to charge the credit card they have on file, wait another 3 days, call to find out that the order never made it from the main office to the local office, and then find the order on your front doorstep missing 3/4 of it about a week after you originally called to reorder. Great! Time to reorder for the month again!
Have a problem with your pump? No problem, send it in for repairs and kiss it goodbye even though you own it outright. Don't worry, they'll send you a replacement that's from a completely different brand and then neglect to send you any of appropriate supplies for the new brand of pump.
Have a 10% copay from your insurance? Don't worry, they'll bill you 20% wait a month and then randomly refund your money. Oooh or even better- they'll only bill you for 5%, wait 6 months, then bill you for all they forgot to totaling hundreds of dollars, and then demand full payment within 14 days or they will stop your life sustaining services.
Need a new, improved, popular product? Great! Give them a call, ask for it, and have them deny its exsistance. Then when you site the actual part number to verify its real, they'll let you know they're ordering it and it will arrive in 14 days. After 14 days feel free to call and question where it is. But, expect to get frazzled when they then claim you are fabricating the entire conversation you had with their representative 14 days ago because said product doesn't exist. Again, site that part number, wait 3 months, call the president of the company and have 3 of the popular product show up on your doorstep for free.
Fun stuff!! I spent most of my morning on the phone with them and our insurance yesterday trying to sort things out and desperately hoping that we could use another insurance approved DME. So far, no luck!
Wacko's Inc is ridiculous. I am on the phone with them multiple times a week for one reason or another and it is so old. They actually mark up the cost of Lucy's formula by a near 60% so its no wonder insurance costs so much. Its downright comical how poor their customer service and communication is. HOW they manage to screw up EVERY interaction we have with them I will never understand. It should all be pretty simple, right?
Need a supply reorder? Oh no. You have to call to order, then call back to make sure its correct at which time you'll discover the order wasn't placed or that it was placed for all the WRONG supplies, place order again, wait 2 days, call back and find out they are waiting for your permission to charge the credit card they have on file, wait another 3 days, call to find out that the order never made it from the main office to the local office, and then find the order on your front doorstep missing 3/4 of it about a week after you originally called to reorder. Great! Time to reorder for the month again!
Have a problem with your pump? No problem, send it in for repairs and kiss it goodbye even though you own it outright. Don't worry, they'll send you a replacement that's from a completely different brand and then neglect to send you any of appropriate supplies for the new brand of pump.
Have a 10% copay from your insurance? Don't worry, they'll bill you 20% wait a month and then randomly refund your money. Oooh or even better- they'll only bill you for 5%, wait 6 months, then bill you for all they forgot to totaling hundreds of dollars, and then demand full payment within 14 days or they will stop your life sustaining services.
Need a new, improved, popular product? Great! Give them a call, ask for it, and have them deny its exsistance. Then when you site the actual part number to verify its real, they'll let you know they're ordering it and it will arrive in 14 days. After 14 days feel free to call and question where it is. But, expect to get frazzled when they then claim you are fabricating the entire conversation you had with their representative 14 days ago because said product doesn't exist. Again, site that part number, wait 3 months, call the president of the company and have 3 of the popular product show up on your doorstep for free.
Fun stuff!! I spent most of my morning on the phone with them and our insurance yesterday trying to sort things out and desperately hoping that we could use another insurance approved DME. So far, no luck!
Tuesday, March 1, 2011
Weekend Getaway
We went away over the weekend. My husband's family and friends rent a cabin and go skiing every year. Lucy and I usually don't go, simply because I always worry she isn't well enough, but we decided to go ahead this year. I am so glad we did, it was great!
The kids love being in a houseful of people and just lounging around. The house was absolutely beautiful! Lucy took a "swim" the the jacuzzi bathtub everyday. The weekend was just what we needed, I think. There's nothing like staying up late with family and friends laughing and having a good time!
But its back to reality. Today we get unpacked, catch up on laundry and school, and restock the fridge!
The kids love being in a houseful of people and just lounging around. The house was absolutely beautiful! Lucy took a "swim" the the jacuzzi bathtub everyday. The weekend was just what we needed, I think. There's nothing like staying up late with family and friends laughing and having a good time!
But its back to reality. Today we get unpacked, catch up on laundry and school, and restock the fridge!
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