The past few weeks, medically, Evie has been fine. We have, however, had a lot of other complications to her care. She lost medicaid. So, that being said, we lost the ability to pay for Home Health, medical supplies: including her feeding pump, extensions, bags, syringes, everything we physically need to feed her. Evie currently takes nothing by mouth that could #1 sustain her and #2 keep her blood sugar high enough to not go into a metabolic crisis. So, these things are not an option. The only way we have of feeding her, is through the tube. Medicaid also payed for a few of her meds.
So, I have been fighting like the Irish to get it back. I have written letters, I have filled out all kinds of paperwork, and made numerous phone calls. To the point of exhaustion. We still have to wait 90 days before we hear anything. So far, its been 3 weeks, and we still no answers and no medicaid.
So, here I am, looking at all these supplies, that, day by day are dwindling down. Our Problem: they are running out and it would cost us about $2,500, a month for the supplies she needs. Not to mention, this month in particular, we need syringes which total about $200, for a years supply, and a new pump which is $900. So, this month , we would need $3600. For everything. Even if we could somehow find $3600 this month we would be in the exact same boat next month.
So, good news, is that we got a new Med Supply company, AKA, a DME, who is giving us the supplies we need this month. Including a new pump and syringes. They are writing letters to Blue Cross, who won't pay for these items, and praying that they can prove medical necessity, to get them to cover them, until we hear back from Medicaid. As the pharmacist said, we are basically "playing Russian roulette". Hopefully BCBS will cover it, and if not, we will hopefully get medicaid back and then they will retroactively pay for what we have been given.
Worst case scenario, is that BCBS won't cover it, and we don't get medicaid back, and we owe thousands of dollars back to the DME company who, in good faith, gave us the supplies. This would obviously devastate our family financially. Because not only would we have to pay for supplies to cover what we have already received, but then we would have to come up with the money for future supplies too.
I wish I were just worried about what school my child can go to, and whether or not she is eating enough fruits and veggies. I wish that what we are going through today, didn't affect our tomorrow, but it does. I seriously need to know that we are going to be ok. That my baby girl is going to have the supplies she needs, and that our family isn't going to have to give up everything to have them.
I can tell myself all day long, that God has this under control, but, honestly, I don't believe it. Thankfully, the issue of not getting supplies has been solved. And surely, SURELY, she will get medicaid back based on medical need. If I act irrational, know that it probably isn't you, and it is just a hard situation that we have found ourselves in.
God knows our every thought, and knows what it feels like to go though every struggle that we experience. In my head, I know this, but turning something THIS big over to him, is just not something I can do yet. The worst feeling in the world is not knowing what is coming. Not knowing how my girl is going to get the things she needs to LIVE, not just clothes and shoes, but seriously expensive supplies, is scary for me. I wish I could just say "here it is, God. our finances, our house, our cars, our everything. Take it. I no longer worry about it". But I don't know how to do that. As soon as I say it, I take it back.
Monday, April 18, 2011
Friday, March 25, 2011
Proud
Evie stood up today by herself, for the first time. Its odd, because even though she has been through SO much, she is very determined and very strong. She is right on track, according to her milestones. It would be easy for both of us to give up on each other, but we both keep striving to do better: to reach those milestones and beat the odds, no matter the circumstances. Evie just got out of a 2.5 week long stint in the hospital, that resulted in a big change for our family- getting the GJ Tube. And the day after she gets home, she decides to stand up. Maybe it doesn't mean much to normal families, with normal babies. But to me, after all she has been through, (getting a central line, vomiting daily along with many other GI issues, and being stuck in a baby cage for a crib, for 2.5 weeks) it is a big deal. It did not stop her from regaining the ground she had lost. Lets just say, tonight, I am a proud mommy.
Evie is different. Not because of all her medical issues, although that certainly makes her different from most kids, but because of her sheer determination. Perhaps she gets that from me. I strive to make her life better. I urge her to always be pursuing the next goal. We, together, work very hard to ensure that she stays on track.
That being said, our lives are much different after this last procedure- the GJ Tube. She currently eats 21 hours out of the day. I would have to imagine after eating that much, that she will not want to eat by mouth. She is getting to the point where i ask her to take a bite, and she will shake her head no. Not just move her head adversely away from the food/spoon, but she says "no". Too, not only is she "eating" constantly, but she is always attached to an IV pole. I feel so bad for her because she cannot move around like she needs to be able to do. Its hard for me as a parent, of such an amazing little girl, to watch her get frustrated because of cords that are wrapped around her body. The backpack the company sent to us is the smallest that they have and it is wayyy too big for her, so I am going to have to find something else to work, so that she can learn to wear it comfortably, and proudly at the same time.
We usually just let her explore her environment, and watch with pride as she discovers new things, but because of her leash (the feeding pump) I had to put her in a pack and play today, just so that she can play without me having to be right there supervising her every move, following her around with her IV pole. It worked for a bit, but I have a feeling that she will get bored pretty quickly. I pray that we can find a solution that works for both me and her.
She is tough. She has been through so much and to see her feeling so much better, makes my eyes water. I honestly never thought we'd make it here. I am hoping that with this tube, she can learn to like food, keep up with those milestones, and, perhaps most importantly, learn how to be proud of who she is.
Evie is different. Not because of all her medical issues, although that certainly makes her different from most kids, but because of her sheer determination. Perhaps she gets that from me. I strive to make her life better. I urge her to always be pursuing the next goal. We, together, work very hard to ensure that she stays on track.
That being said, our lives are much different after this last procedure- the GJ Tube. She currently eats 21 hours out of the day. I would have to imagine after eating that much, that she will not want to eat by mouth. She is getting to the point where i ask her to take a bite, and she will shake her head no. Not just move her head adversely away from the food/spoon, but she says "no". Too, not only is she "eating" constantly, but she is always attached to an IV pole. I feel so bad for her because she cannot move around like she needs to be able to do. Its hard for me as a parent, of such an amazing little girl, to watch her get frustrated because of cords that are wrapped around her body. The backpack the company sent to us is the smallest that they have and it is wayyy too big for her, so I am going to have to find something else to work, so that she can learn to wear it comfortably, and proudly at the same time.
We usually just let her explore her environment, and watch with pride as she discovers new things, but because of her leash (the feeding pump) I had to put her in a pack and play today, just so that she can play without me having to be right there supervising her every move, following her around with her IV pole. It worked for a bit, but I have a feeling that she will get bored pretty quickly. I pray that we can find a solution that works for both me and her.
She is tough. She has been through so much and to see her feeling so much better, makes my eyes water. I honestly never thought we'd make it here. I am hoping that with this tube, she can learn to like food, keep up with those milestones, and, perhaps most importantly, learn how to be proud of who she is.
Saturday, February 12, 2011
My Secrets
Sometimes I think that if people were to see the real me, they may not like what they see. Sometimes I feel that even God doesn't like the real me: the person that keeps things hidden so far down, that no one, not even my close ones, know or want to know what is going on.
I am a woman, trying my best to figure out God's will for my life. I could have gone to Grad School, then on to get my Doctorate, but instead, I am a mother and a wife. In that order. I never meant it to be in that order, it just happened. Circumstances prevent me from putting my marriage first. That being said, sometimes I feel like even Patrick is at one end of a long, dark tunnel, and I am at the other. We only see shadows of each other.
Furthermore, I'm not even sure I am following God's will for my life. I am just floating along. We didn't plan Evie...We didn't pray about having her. I didn't pray to see if I should quit working. I didn't pray to start selling 31. These things just Happened...So how do I know I am following God's plan? I always thought I would be singing somewhere, or teaching music, or directing a choir, performing in some capacity, doing something along those lines. Instead, I sing at church and teach preschool 1 day a week for 30 min at a time. How do I know that is what God wants me to be doing???
I have heard a lot of compliments lately about how brave I am, about how strong a woman I am for dealing with a special needs baby, but the truth is, that I didn't ask to be that way. I don't try to be strong. I just do what I have to do. Any mother in my shoes would do the same thing. I don't pretend to know everything about my baby. I research and search for answers when I need to. I have given up my career for her. But honestly, any mother would do that, if they had to. And most do, in some way or another. I am not special. I was not given Evie for any specific reason, but she was a gift. I will never take Health for granted, and I have learned a few lessons over the past year, but it doesn't make me any more of a mother, than anyone else.
As a matter of fact, I feel like a terrible mom sometimes. I have help taking care of her, when there are many kids out there with MUCH worse conditions, that only have their moms. I frequently take time outs, where I will leave her with someone else so that I can have some "me" time, where as other moms are incapable of doing such. I often take naps when she is napping. I am incapable of keeping a clean house and hot, healthy meals on the table every night. Laundry is frequently piled up. Sometimes I wish I could be teaching music, my passion, and instilling that in someone else.
Evie deserves a Mom who can do all of these things, and instead she is stuck with me, for better or worse. As is Patrick.
I struggle with the "should-do's/ should-be's". We don't have a big fancy house on Ellerbe. We, as a matter of fact, have a lower-income Middle class home, that is mostly filled with love and second hand furniture. We have clutter, that I am embarrassed about. My husband is a procrastinator and a pack rat. And I let him be.
We went to Atlanta this past week, and there I met so many wonderful people who have much worse problems than we do. They are saints. Me? I'm just a struggling Christian, who has much room for growth.
Our care plan for Evie is pretty much the same since ATL. We are going to try her on a different med, and if that doesn't work, we will do another med, that isn't FDA approved, and THEN, if that doesn't work, we will have to resort to the GJ Tube. However, I am much more comfortable with this having seen the new GI. His plan is one that is much more feasible than our last GI, who claimed that we would have to feed her almost 24-7. His plan is to do 12 hr feeds at night, and then 3 off, 3 on, 3 off, 3 on and so on, to where we would still take her to therapy, still let her eat by mouth, and most importantly, if we didn't like it, how it was working, we could take it out, no problem. No questions asked. He spent 45 min in the room with us, talking about our options, and the procedure (Upper GI) we were going to have done, which I LOVED. After returning, he spent an additional 45 minutes explaining the results and the meds we were gonna try. I feel much more comfortable with him, than the GI from NOLA. I hope I made the right choice.
Most days, I love my life. I love being a Mommy and a wife. I love selling 31, and I love my 30 min a week teaching. But some days, I feel like its not enough. I am not fulfilling my life long dream of performing/singing/songwriting/conducting/teaching. It feels like I am just floating right now. I am hoping God will reveal his plan for me and I am hoping that it has something to do with music. But most days, I am not so sure. Its probably a huge lack of faith on my part. But I am going to figure it out one day.
For now, I will continue to do the best job I can with Evie, and try not to sink into depression. I will be a wife and mother, in that order, some day, if not today.
I will have that house on Ellerbe. I will keep the laundry folded and put away. I will have brand new furniture that fits my style, and a clutter free front room. I will have hot, healthy meals on the table at supper. And hopefully, I will be, as Brother Mark used to say, the best Christian that Evie knows.
I am a woman, trying my best to figure out God's will for my life. I could have gone to Grad School, then on to get my Doctorate, but instead, I am a mother and a wife. In that order. I never meant it to be in that order, it just happened. Circumstances prevent me from putting my marriage first. That being said, sometimes I feel like even Patrick is at one end of a long, dark tunnel, and I am at the other. We only see shadows of each other.
Furthermore, I'm not even sure I am following God's will for my life. I am just floating along. We didn't plan Evie...We didn't pray about having her. I didn't pray to see if I should quit working. I didn't pray to start selling 31. These things just Happened...So how do I know I am following God's plan? I always thought I would be singing somewhere, or teaching music, or directing a choir, performing in some capacity, doing something along those lines. Instead, I sing at church and teach preschool 1 day a week for 30 min at a time. How do I know that is what God wants me to be doing???
I have heard a lot of compliments lately about how brave I am, about how strong a woman I am for dealing with a special needs baby, but the truth is, that I didn't ask to be that way. I don't try to be strong. I just do what I have to do. Any mother in my shoes would do the same thing. I don't pretend to know everything about my baby. I research and search for answers when I need to. I have given up my career for her. But honestly, any mother would do that, if they had to. And most do, in some way or another. I am not special. I was not given Evie for any specific reason, but she was a gift. I will never take Health for granted, and I have learned a few lessons over the past year, but it doesn't make me any more of a mother, than anyone else.
As a matter of fact, I feel like a terrible mom sometimes. I have help taking care of her, when there are many kids out there with MUCH worse conditions, that only have their moms. I frequently take time outs, where I will leave her with someone else so that I can have some "me" time, where as other moms are incapable of doing such. I often take naps when she is napping. I am incapable of keeping a clean house and hot, healthy meals on the table every night. Laundry is frequently piled up. Sometimes I wish I could be teaching music, my passion, and instilling that in someone else.
Evie deserves a Mom who can do all of these things, and instead she is stuck with me, for better or worse. As is Patrick.
I struggle with the "should-do's/ should-be's". We don't have a big fancy house on Ellerbe. We, as a matter of fact, have a lower-income Middle class home, that is mostly filled with love and second hand furniture. We have clutter, that I am embarrassed about. My husband is a procrastinator and a pack rat. And I let him be.
We went to Atlanta this past week, and there I met so many wonderful people who have much worse problems than we do. They are saints. Me? I'm just a struggling Christian, who has much room for growth.
Our care plan for Evie is pretty much the same since ATL. We are going to try her on a different med, and if that doesn't work, we will do another med, that isn't FDA approved, and THEN, if that doesn't work, we will have to resort to the GJ Tube. However, I am much more comfortable with this having seen the new GI. His plan is one that is much more feasible than our last GI, who claimed that we would have to feed her almost 24-7. His plan is to do 12 hr feeds at night, and then 3 off, 3 on, 3 off, 3 on and so on, to where we would still take her to therapy, still let her eat by mouth, and most importantly, if we didn't like it, how it was working, we could take it out, no problem. No questions asked. He spent 45 min in the room with us, talking about our options, and the procedure (Upper GI) we were going to have done, which I LOVED. After returning, he spent an additional 45 minutes explaining the results and the meds we were gonna try. I feel much more comfortable with him, than the GI from NOLA. I hope I made the right choice.
Most days, I love my life. I love being a Mommy and a wife. I love selling 31, and I love my 30 min a week teaching. But some days, I feel like its not enough. I am not fulfilling my life long dream of performing/singing/songwriting/conducting/teaching. It feels like I am just floating right now. I am hoping God will reveal his plan for me and I am hoping that it has something to do with music. But most days, I am not so sure. Its probably a huge lack of faith on my part. But I am going to figure it out one day.
For now, I will continue to do the best job I can with Evie, and try not to sink into depression. I will be a wife and mother, in that order, some day, if not today.
I will have that house on Ellerbe. I will keep the laundry folded and put away. I will have brand new furniture that fits my style, and a clutter free front room. I will have hot, healthy meals on the table at supper. And hopefully, I will be, as Brother Mark used to say, the best Christian that Evie knows.
Friday, February 4, 2011
Atlanta
I will catch everyone up on whats been going on the past year:
Evangeline has a rare metabolic disorder known as LCHAD. She cannot process long chain fatty acids. In short, she eats a very low fat diet and must eat every 3 hrs so that her blood sugar does not drop. The reason she must maintain a strict diet, is that #1, if she does eat the wrong kinds of fats, it will cause her to become really sick to her stomach, and the fat could eventually build up around her heart/eyes, since it has no where else to go(she can't process it to use as energy, like most of us.) #2 since she can't use her fat stores as energy, she eats every 3 hrs and uses the sugar from those feeds as energy.
Evangeline has been vomiting lately. So much so, that she lost 8 ounces this past week. When an LCHAD baby vomits, there is a tendency for the blood sugar to drop. If it drops, she can become hypoglycemic: lose muscle tone,lose alertness and, among many other symptoms, it can eventually lead to loss of brain cells.
Currently, we feed her every 3 hrs during the day, and have her on a continuous slow drip of formula via G-tube at night. Our fear, is that she will vomit during the night and inhale her own vomit(this is known as aspiration). So, a few weeks ago, when she began vomiting again, we placed a call to her current GI, and his recommendation was to place a GJ-Tube, where she would get continuous feeds throughout the day. 24 hrs a day, Evie would be hooked up to feeding pump. This would stop the vomiting, because her tube would not only be moved from her stomach to the lower intestines, but she would get a very slow drip all day. This would also keep her blood sugar high, as she would be "eating" constantly.
HOWEVER, while these things are good, there are some definite complications to this procedure: She would eat nothing by mouth, it would impede her mobility, and it would hinder us from being able to take her out, anywhere.
In short, I am not ready to make this big of a decision.
So, after I learned what her GI wanted to do, we decided to make some calls to hospitals, clinics, etc. to find the best solution for her. We called Children's Houston, Children's Little Rock, Baylor, and finally, Children's Center for Digestive Health Care located in Atlanta, GA. Of all these places, only the CCDH would answer our questions.
Before making those phone calls, I asked God to show me a clear path. Not having any of my questions answered by the others, CCDH was the clear choice. One that God had chosen for us.
We are very blessed to have been able to find, through a good friend, that there are 2 Ronald McDonald houses in Atlanta. Praise God that they have the space for us, at the one closest to the CCDH. WE are also very blessed to have found out about Angel Flights and Pilots for Patients. They, if weather permits, are flying us to Atlanta, at no charge to us. I am so very thankful to the men and women who run these organizations. Without them, we would be stuck driving a very long drive, with a 1 year old who has special needs. This has all be orchestrated by God,and I want to give him all the glory! Everything seemed to fall into place.
I hope that we get the answers here that we need. Patrick and I have been fighting for Evie for a very long time, and are ready to see a Dr is willing to do the same.IF we don't find them here, I have full confidence that God will guide our steps in the right direction.
Thank you all for reading. I hope to update again tomorrow, in celebration of making it ONE WHOLE YEAR!!
Evangeline has a rare metabolic disorder known as LCHAD. She cannot process long chain fatty acids. In short, she eats a very low fat diet and must eat every 3 hrs so that her blood sugar does not drop. The reason she must maintain a strict diet, is that #1, if she does eat the wrong kinds of fats, it will cause her to become really sick to her stomach, and the fat could eventually build up around her heart/eyes, since it has no where else to go(she can't process it to use as energy, like most of us.) #2 since she can't use her fat stores as energy, she eats every 3 hrs and uses the sugar from those feeds as energy.
Evangeline has been vomiting lately. So much so, that she lost 8 ounces this past week. When an LCHAD baby vomits, there is a tendency for the blood sugar to drop. If it drops, she can become hypoglycemic: lose muscle tone,lose alertness and, among many other symptoms, it can eventually lead to loss of brain cells.
Currently, we feed her every 3 hrs during the day, and have her on a continuous slow drip of formula via G-tube at night. Our fear, is that she will vomit during the night and inhale her own vomit(this is known as aspiration). So, a few weeks ago, when she began vomiting again, we placed a call to her current GI, and his recommendation was to place a GJ-Tube, where she would get continuous feeds throughout the day. 24 hrs a day, Evie would be hooked up to feeding pump. This would stop the vomiting, because her tube would not only be moved from her stomach to the lower intestines, but she would get a very slow drip all day. This would also keep her blood sugar high, as she would be "eating" constantly.
HOWEVER, while these things are good, there are some definite complications to this procedure: She would eat nothing by mouth, it would impede her mobility, and it would hinder us from being able to take her out, anywhere.
In short, I am not ready to make this big of a decision.
So, after I learned what her GI wanted to do, we decided to make some calls to hospitals, clinics, etc. to find the best solution for her. We called Children's Houston, Children's Little Rock, Baylor, and finally, Children's Center for Digestive Health Care located in Atlanta, GA. Of all these places, only the CCDH would answer our questions.
Before making those phone calls, I asked God to show me a clear path. Not having any of my questions answered by the others, CCDH was the clear choice. One that God had chosen for us.
We are very blessed to have been able to find, through a good friend, that there are 2 Ronald McDonald houses in Atlanta. Praise God that they have the space for us, at the one closest to the CCDH. WE are also very blessed to have found out about Angel Flights and Pilots for Patients. They, if weather permits, are flying us to Atlanta, at no charge to us. I am so very thankful to the men and women who run these organizations. Without them, we would be stuck driving a very long drive, with a 1 year old who has special needs. This has all be orchestrated by God,and I want to give him all the glory! Everything seemed to fall into place.
I hope that we get the answers here that we need. Patrick and I have been fighting for Evie for a very long time, and are ready to see a Dr is willing to do the same.IF we don't find them here, I have full confidence that God will guide our steps in the right direction.
Thank you all for reading. I hope to update again tomorrow, in celebration of making it ONE WHOLE YEAR!!
Wednesday, January 19, 2011
Days and Nights
This is blog #37. I have not blogged in a while. It seems that most of the blogs I write are negative things, not positive things, however, it is my way of keeping the masses informed.
Evangeline has started throwing up. Because of her Nissenfundo placation, she is not supposed to do this. It all started last week, when she spit up. Now, a week later, spit up has turned into full fledged projectile vomiting. For her therapy, this could quite possibly be a good thing. She has started putting foods in her mouth, and started taking sips again, after a long hiatus. (She got a really bad cold and decided not to eat anything) Well, now she is well, and is has decided to try foods again. Still not enough to sustain her, but she is doing much better.
However, our problem lies in keeping her sugar up. Once again, now, after she vomits, I have to go back and re-feed her to keep her sugar from dropping. We also can no longer use the pump at night to feed her. There is always the fear that she will vomit on the pump, and then get it into her lungs, and we would not hear this happening because we are sleeping.(aspiration) So, for safety reasons, we now feed her during the night, to keep her sugar high, and still keep safe.
So, basically, she now gets bolus fed every 3 hrs 'round the clock.
Thankfully we do have Annessa. We have contemplated changing her to nighttime hours, so that she could feed her during the night, but then I would have to find someone to watch her during the day, while I worked. So, for now, I am waking up to feed her. However, we have already run into issues with that,too. Not only am I completely dragging during the day, but I was late on her feeds, 2 nights in a row. I woke up at midniught to feed her, then set my alarm for 3, and didn't quite make it. I woke up at 4:30. 1.5 hrs late!!! That could be REALLY bad for her LCHAD. I don't know what the right solution is.
We have contacted her "care team", as I like to call them, so that everyone knows what is going on.
I am thrilled at the prospect of her eating by mouth! Believe me! It is something that I have prayed for, daily for the last 5 months. I was even aware that this might happen, however, I did not consider the implications that would occur with her Nissen coming loose. With it comes a pandora's box of problems. For not just me, but her too: Because she isn't sleeping as well, she is tired during the day. She drags too!
I just thought my sleepless nights were over. Instead, I now have responsibilities: to both her, and both my jobs, that I don't think I can fully fulfill.
To top it off, I am trying to find a new therapy for her, one that will be more beneficial. I want her to eat. Bottom Line. I am looking for something more aggressive. Perhaps we can make eating a pleasurable experience, rather than a painful, scary experience? (If only I didn't like to eat so much! haha)
I have been on the phone all day with therapists, Drs, nurses, our dietitian, my sister, basically anyone that will hear my plight. I am willing to try anything to make her better, and it seems nothing is working.
Sorry, once again, for venting. I just fear that she will never learn to like food, because we keep shoving it down her.There is no easy solution. I keep waiting on the right answer, but I can't seem to find it. I love my Girl to pieces, and I will always love her. I am willing to go through this, and much more for her, To keep her healthy and well. If only life wasn't so hard.
Evangeline has started throwing up. Because of her Nissenfundo placation, she is not supposed to do this. It all started last week, when she spit up. Now, a week later, spit up has turned into full fledged projectile vomiting. For her therapy, this could quite possibly be a good thing. She has started putting foods in her mouth, and started taking sips again, after a long hiatus. (She got a really bad cold and decided not to eat anything) Well, now she is well, and is has decided to try foods again. Still not enough to sustain her, but she is doing much better.
However, our problem lies in keeping her sugar up. Once again, now, after she vomits, I have to go back and re-feed her to keep her sugar from dropping. We also can no longer use the pump at night to feed her. There is always the fear that she will vomit on the pump, and then get it into her lungs, and we would not hear this happening because we are sleeping.(aspiration) So, for safety reasons, we now feed her during the night, to keep her sugar high, and still keep safe.
So, basically, she now gets bolus fed every 3 hrs 'round the clock.
Thankfully we do have Annessa. We have contemplated changing her to nighttime hours, so that she could feed her during the night, but then I would have to find someone to watch her during the day, while I worked. So, for now, I am waking up to feed her. However, we have already run into issues with that,too. Not only am I completely dragging during the day, but I was late on her feeds, 2 nights in a row. I woke up at midniught to feed her, then set my alarm for 3, and didn't quite make it. I woke up at 4:30. 1.5 hrs late!!! That could be REALLY bad for her LCHAD. I don't know what the right solution is.
We have contacted her "care team", as I like to call them, so that everyone knows what is going on.
I am thrilled at the prospect of her eating by mouth! Believe me! It is something that I have prayed for, daily for the last 5 months. I was even aware that this might happen, however, I did not consider the implications that would occur with her Nissen coming loose. With it comes a pandora's box of problems. For not just me, but her too: Because she isn't sleeping as well, she is tired during the day. She drags too!
I just thought my sleepless nights were over. Instead, I now have responsibilities: to both her, and both my jobs, that I don't think I can fully fulfill.
To top it off, I am trying to find a new therapy for her, one that will be more beneficial. I want her to eat. Bottom Line. I am looking for something more aggressive. Perhaps we can make eating a pleasurable experience, rather than a painful, scary experience? (If only I didn't like to eat so much! haha)
I have been on the phone all day with therapists, Drs, nurses, our dietitian, my sister, basically anyone that will hear my plight. I am willing to try anything to make her better, and it seems nothing is working.
Sorry, once again, for venting. I just fear that she will never learn to like food, because we keep shoving it down her.There is no easy solution. I keep waiting on the right answer, but I can't seem to find it. I love my Girl to pieces, and I will always love her. I am willing to go through this, and much more for her, To keep her healthy and well. If only life wasn't so hard.
Sunday, December 19, 2010
Eating With My LCHADder
Tonight brought the best of surprises. After all that complaining I did several days/weeks ago about eating out, with NO healthy options, Evangeline and I shared a plate, that was completely "Evie-Safe", as I like to call it. We went to Longhorns, I wasn't too hungry, but went along for the ride, as I often do. We arrived there, and Looking at the kids menu to see, and JUDGE, what unhealthy foods are offered our children, I was very surprised! They had grilled chicken and veggies! I was elated! So I ordered it, assuming the chicken does have added fats, I offered Evie Grace a small portion, but meats aren't usually her thing. (well lets face it, ANY food isn't her thing) She put it in her mouth, did the head shake bit and immediately spit it out. But she tried it, which is always a plus! We ordered the Veggies, which of course came with a "Veggie Butter Sauce" that I promptly asked the waitress to not add to ours, and they were great! It came with 2 orange slices, which were right up Evangeline's alley. She sucked the juice out of the orange, and tried bits of carrots and broccoli and some yellow squash. She even reached for some water towards the end of her meal and drank, Swallowed, and then went about her merry way. Of course, by this time she was extremely cranky, as she had worked VERY hard. Eating is not an easy thing for her, and she did well! I really feel like inserting an "applause" here.
Alexandra's Birthday Party (My 1 year old Niece)
Evangeline and I hosted Alex's party here, at our house, and of course there was cake, ice cream, sandwiches, etc that she was unable to eat, (due to both fat restrictions and inability to eat much by mouth) However, my wonderful sister was very accommodating and decided to buy her some FF Sherbet. I was very grateful. She didn't have to buy sherbet for her niece who doesn't eat by mouth! But she graciously offered it, and we accepted. We are always willing to try ANYTHING to get this child to eat, as she screams when she sees a bottle, and thrashes her head back and forth at the suggestion of food. (Obviously, she has gotten better, through much therapy, and prayer!!) I digress. She bought the sherbet and when it came time for Ice cream, I scooped some into a bowl, assuming it would get wasted, and thrown away, as do most of the foods I buy for Evie. However, she proved Mommy wrong! She ate several bites of the sherbet, without a fuss! No head turning, nothing. She even put the spoon into her mouth herself. This is something she hasn't done since before G-tube surgery.
All of this to say, we are no where near ready for eating whole meals by mouth, but we are making very slow progress. I am finding the more I work with her, the better she gets. I never force, but I encourage the MESS out of her to eat. Eat anything put in front of her.
Thinking back, to her surgery and what I was scared most about. This is it. I am living it. A bottle aversion, that has turned into food aversion. Something that we will deal with for several years. I remember texting friends telling them that I was afraid of this happening. All the nights spent holding a baby with an NG tube, crying, knowing that this was going to be the outcome. It certainly has been a very long road. And we have a long ways to go, but I am so grateful that I have a God who gave me such a wonderful support system. Moms that have tube fed kids. Moms that have kids with FOD's. Moms that have been through this and so much more. People that I can truly lean on for great advice, practical help, and just to be there when some things fall apart.
I am also blessed for other friends who have perfectly healthy kids. Ones that I can look and say, that will be us. ONE day! Maybe not today, or tomorrow, but someday things are bound to get better. These friends are so sweet and special to me! They uplift me, and pray for me! They comfort me when I have lost faith in God. (Which has happened many times) They may not even know it, but I look at their families, and I admire them and look to them for what we will be. They give me goals, insight on how to be a better christian, and parent. I used to look at them with envy, because they had "perfect" kids, but thankfully, prayerfully, I have grown, (...I hope!!) and now look to them for encouragement.
I'm not sure what inspired me to come clean about my feelings lately. Perhaps its Evie's 1 year birthday Celebration coming up. Perhaps its the Christmas Spirit, wanting me to tell all my friends how much I truly need them! Maybe its just time I thanked everyone. I am not sure.
I know that I have a long way to go as a Christian and wife and mother. Evangeline and I have a long road to travel. We are a long ways away from any meals that are ONLY eaten by mouth. But I look at where we came from. And.....WOW!
Alexandra's Birthday Party (My 1 year old Niece)
Evangeline and I hosted Alex's party here, at our house, and of course there was cake, ice cream, sandwiches, etc that she was unable to eat, (due to both fat restrictions and inability to eat much by mouth) However, my wonderful sister was very accommodating and decided to buy her some FF Sherbet. I was very grateful. She didn't have to buy sherbet for her niece who doesn't eat by mouth! But she graciously offered it, and we accepted. We are always willing to try ANYTHING to get this child to eat, as she screams when she sees a bottle, and thrashes her head back and forth at the suggestion of food. (Obviously, she has gotten better, through much therapy, and prayer!!) I digress. She bought the sherbet and when it came time for Ice cream, I scooped some into a bowl, assuming it would get wasted, and thrown away, as do most of the foods I buy for Evie. However, she proved Mommy wrong! She ate several bites of the sherbet, without a fuss! No head turning, nothing. She even put the spoon into her mouth herself. This is something she hasn't done since before G-tube surgery.
All of this to say, we are no where near ready for eating whole meals by mouth, but we are making very slow progress. I am finding the more I work with her, the better she gets. I never force, but I encourage the MESS out of her to eat. Eat anything put in front of her.
Thinking back, to her surgery and what I was scared most about. This is it. I am living it. A bottle aversion, that has turned into food aversion. Something that we will deal with for several years. I remember texting friends telling them that I was afraid of this happening. All the nights spent holding a baby with an NG tube, crying, knowing that this was going to be the outcome. It certainly has been a very long road. And we have a long ways to go, but I am so grateful that I have a God who gave me such a wonderful support system. Moms that have tube fed kids. Moms that have kids with FOD's. Moms that have been through this and so much more. People that I can truly lean on for great advice, practical help, and just to be there when some things fall apart.
I am also blessed for other friends who have perfectly healthy kids. Ones that I can look and say, that will be us. ONE day! Maybe not today, or tomorrow, but someday things are bound to get better. These friends are so sweet and special to me! They uplift me, and pray for me! They comfort me when I have lost faith in God. (Which has happened many times) They may not even know it, but I look at their families, and I admire them and look to them for what we will be. They give me goals, insight on how to be a better christian, and parent. I used to look at them with envy, because they had "perfect" kids, but thankfully, prayerfully, I have grown, (...I hope!!) and now look to them for encouragement.
I'm not sure what inspired me to come clean about my feelings lately. Perhaps its Evie's 1 year birthday Celebration coming up. Perhaps its the Christmas Spirit, wanting me to tell all my friends how much I truly need them! Maybe its just time I thanked everyone. I am not sure.
I know that I have a long way to go as a Christian and wife and mother. Evangeline and I have a long road to travel. We are a long ways away from any meals that are ONLY eaten by mouth. But I look at where we came from. And.....WOW!
Tuesday, December 14, 2010
Medicines? Who needs Meds?
Well, having another issue lately with getting Evangeline the medicines she needs to function. We had run out of Amitriptaline yesterday, so I called the Dr had had it called it, supposedly. Later yesterday afternoon, I called the pharmacy, one of only 2 in town that could fill a compounded script, to see if it was ready, as it is across town, and I didn't want to drive over there just to see if it was ready. They, of course were still working on it. So last night we went without that med. Let me just say, that she has been having all kinds of stomach issues, and not having this med didn't help. She was awake till 12:30am, and just laid in my arms staring at me sometimes retching crying and having gas. So unusual. She smiled if I talked to her, but she was not feeling well at all, I could tell. We played the game to where I put her in bed, she cried for 10 min, I picked her up, rocked, walked, sang, talked, cuddled, etc, then put her back in bed, then she would cry again. For 3.5 hrs we did this. 9pm-12:30. Finally, I fell asleep in the chair holding her, and thats how she rested. Eventually she went to bed, but still woke up several times throughout the night.
There is no way I can tell if it was from a stomach bug or lack of meds, or both, but I know it didn't help.
So today, I go to pick up the script, assuming its ready. Guess what? It wasn't. The Dr never called it in. There was no script back there, nothing. I practically begged for 1 dose for the night, and they refused to give it to me, saying they had to compound it together, and the store was closing soon.
Not wanting another bad night for her (or me, for that matter,) I called Annessa to get advice, and help. She ended up calling the pharmacy, and low and behold, they had a bottle ready, just didn't want to dispense it to me without the refill script. They gave us the bottle on the promise that we would get the script taken care of first thing in the morning! I have no problems with that, I am just happy, to get the med in her! Tonight, she went to sleep at 9:30, per usual, and is happily sleeping, no retching, no crying, no gas.
Synergis: an RSV preventative shot
This shot has been a pain in the rear to try and get my child. They reccomend your child get this shot to prevent RSV, especially if they are premature, and have major health issues. Well, my child fits both bills. Born 2 mo early, and has LCHAD.
About 3 weeks ago. our Home Health Agency contacted me about receiving this shot. I had never heard of it, and frankly didn't really want her getting ANOTHER shot. It seems we are always giving her something. So, it apparently is a specialty shot that must be ordered through only a select group of pharmacies. This drug, without insurance, I found out, costs $2,500. For all the shots. It is a 5 mo long process, where she would receive 2 vials a month. Our insurance is going to cover most of that, Praise God. However, what it doesn't cover is $500. That is still quite a bit of money for a teacher, and a brand new 31 consultant/ preschool music teacher/ SAHM. I have called medicaid 5 times. 5 TIMES to see why they are not going to pick up the rest of the bill. And finally at 3:00 today, after telling them and being quite forceful, that I wanted answers. It is simply a ridiculous amount to pay for a shot, and quite frankly, it would be well worth medicaid to pick up the balance. If she didn't have the shot, and ended up with RSV, then hospital bills would go WAYYY over that amount anyways.
So, after finally getting in touch with someone, I found out that the reason they denyed the claim was because the specialty pharmacy that supposedly is one of only a few in the state that has the shot, does not accept medicaid as a insurance provider. That being said, I called everywhere today searching for a pharmacy that both carried the drug, and accepted medicaid. To no luck.
So, we may be out $500, or end up in the hospital. Well, obviously, I know which one is worse,The hospital. It just stinks to have to make that kind of decision. And to be put in that situation. So, I pray that God provides a way to let her get the shot that she needs, and let us find a provider for the shot that accepts medicaid. More phone calls are going to be made tomorrow.
I am tired. Tired of fighting with the system. Tired of having phone bills that are over my minutes because of these organizations that are supposed to help you, but treat you like dirt. Tired of waiting in line, for meds that aren't even there. Tired of Drs offices making mistakes that make my daughter's nights horrible.
It has been a long, long day. I am, however, grateful that the pharmacy gave us the prescription, just to get us through the night. Glad for the rest that I will be able to get tonight. And certainly glad for a nurse that is like family. That will stick up for Evie, when I am at the end of my rope. But most of all, glad for a God who isn't judgmental, and who listens when I complain about ordinary matters!
There is no way I can tell if it was from a stomach bug or lack of meds, or both, but I know it didn't help.
So today, I go to pick up the script, assuming its ready. Guess what? It wasn't. The Dr never called it in. There was no script back there, nothing. I practically begged for 1 dose for the night, and they refused to give it to me, saying they had to compound it together, and the store was closing soon.
Not wanting another bad night for her (or me, for that matter,) I called Annessa to get advice, and help. She ended up calling the pharmacy, and low and behold, they had a bottle ready, just didn't want to dispense it to me without the refill script. They gave us the bottle on the promise that we would get the script taken care of first thing in the morning! I have no problems with that, I am just happy, to get the med in her! Tonight, she went to sleep at 9:30, per usual, and is happily sleeping, no retching, no crying, no gas.
Synergis: an RSV preventative shot
This shot has been a pain in the rear to try and get my child. They reccomend your child get this shot to prevent RSV, especially if they are premature, and have major health issues. Well, my child fits both bills. Born 2 mo early, and has LCHAD.
About 3 weeks ago. our Home Health Agency contacted me about receiving this shot. I had never heard of it, and frankly didn't really want her getting ANOTHER shot. It seems we are always giving her something. So, it apparently is a specialty shot that must be ordered through only a select group of pharmacies. This drug, without insurance, I found out, costs $2,500. For all the shots. It is a 5 mo long process, where she would receive 2 vials a month. Our insurance is going to cover most of that, Praise God. However, what it doesn't cover is $500. That is still quite a bit of money for a teacher, and a brand new 31 consultant/ preschool music teacher/ SAHM. I have called medicaid 5 times. 5 TIMES to see why they are not going to pick up the rest of the bill. And finally at 3:00 today, after telling them and being quite forceful, that I wanted answers. It is simply a ridiculous amount to pay for a shot, and quite frankly, it would be well worth medicaid to pick up the balance. If she didn't have the shot, and ended up with RSV, then hospital bills would go WAYYY over that amount anyways.
So, after finally getting in touch with someone, I found out that the reason they denyed the claim was because the specialty pharmacy that supposedly is one of only a few in the state that has the shot, does not accept medicaid as a insurance provider. That being said, I called everywhere today searching for a pharmacy that both carried the drug, and accepted medicaid. To no luck.
So, we may be out $500, or end up in the hospital. Well, obviously, I know which one is worse,The hospital. It just stinks to have to make that kind of decision. And to be put in that situation. So, I pray that God provides a way to let her get the shot that she needs, and let us find a provider for the shot that accepts medicaid. More phone calls are going to be made tomorrow.
I am tired. Tired of fighting with the system. Tired of having phone bills that are over my minutes because of these organizations that are supposed to help you, but treat you like dirt. Tired of waiting in line, for meds that aren't even there. Tired of Drs offices making mistakes that make my daughter's nights horrible.
It has been a long, long day. I am, however, grateful that the pharmacy gave us the prescription, just to get us through the night. Glad for the rest that I will be able to get tonight. And certainly glad for a nurse that is like family. That will stick up for Evie, when I am at the end of my rope. But most of all, glad for a God who isn't judgmental, and who listens when I complain about ordinary matters!
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