So, all of my life I have wanted nothing more than to teach and perform music. I have a degree in music performance. I currently teach a 31 min preschool class once a week, and have worked at a fabulous private school using the Montessori method of teaching. I also teach Children's music at a church in Greenwood, and help lead worship on Sunday mornings. Also, Patrick and I sing in the choir on Sundays at Brookwood. I love it all!!
However, today our home health nurse brought over some VERY interesting information about a 2 yr nursing degree. Apparently, I lack only 3 classes, (one of which is a Speech class that may be able to be substituted for another humanity I have already taken.) Then, I can get into clinicals, which would be for 3 semesters. Amazing. It requires less hours/time than going back and getting my Music Ed degree.
Here are my thoughts:
After having taught at a wonderful Montessori school, I see where I could have big problems managing a public school classroom. Music or not. I firmly believe in the Montessori method, and KNOW that it works. So, I don't really see me teaching in a public school where I have personally observed many problems. I also don't even want to put my own child in a public school. So why would I want to place myself in that situation? I have the deepest respect for public school teachers. Heck, my husband is currently one. However, that does not mean that I have the ability to teach in one. So, that being said, private school would be an option. But, as most of you know, music is highly specialized. There isn't often a chance to be a music teacher in a private school. Once someone gets the position, they often stay there until retirement.
So, this has been my desire all my life, so why change it?
Having a child changes you. Having a special needs child changes you. I have already learned way more about caring for the sick than most nurses know. I can place an NG tube, I can change out a G-Tube. I know how to work most pump systems, I know how to work an IV machine.I can administer meds, I know about special formulas, reflux, most metabolic diseases, and am familiar with many meds and their side affects. All of this any Mito Mom wil be able to do. But, I see what parents go through when living in the hospital. I honestly care about other sick kids. Not to mention I already am in good with the local hospital staff. I need a goal. Caring for Evie has changed my whole perspective on life. I am not only her Mom, but I am her nurse. I am her advocate.
I can be that for other kids too. I know many kids don't have loving parents like Evie does. I know that other kids get left in hospitals to fend for themselves and their nurses are their only caregivers. This breaks my heart. If I can help ease the pain of being sick, maybe I can make a difference, somehow.
Now, I am just thinking about all of this. I haven't decided to take the plunge yet. But if it is in God's will, then I want to. I am praying and seeking him about it.
Its hard to believe that all of my life's goals can change in a day. But, I can still do church choir. I can still sing on Sundays, and make a difference musically too. I am, obviously, a patron of the Arts. And I still can make sure that music is not forgotten. But I can be a nurse too. Please be praying with me about this. I am going to speak with an adviser next week. If God leads me to do this, then hopefully I can get into 2 of the classes I need this summer. Maybe then I can get into clinicals in the fall. One of the good things about being a nurse is that I can work the hours that I want and still care for Evie the way I need to. It is very versatile and flexible. From what I understand, clinicals is 2 days a week, 8 hrs a day. For 3 semesters. I can handle that. I am scared to make this change, but I think it may be good for me too. For a long time now, I have been in a rut and I have not been this excited in a long time.
But, again, still have not made any big decisions. I really do want this to be from God and not from me, so please be praying with me so that God's hand can lead me. Thankyou for your never ending support!
Wednesday, May 11, 2011
Thursday, May 5, 2011
6th Hospital Visit
We just completed out 6th hospital stay since Evie has been born. That is including the NICU, so, I guess thats not too bad, considering how often other children in similar situations have to stay. Thankfully, this time was very short: a mere 3 day, 2 night stay. We are quite adjusted to life on the inside. We know the cafeteria hours, we know the rules of both the peds floor and the PICU. We have gotten to be very well acquainted with all 3 hospitalists. Its kinda nice walking into a big hospital, knowing she will receive the care that she needs. We even have a schedule that we follow while there. Evie and I wake up, play until 9. I let her play on her own while I eat a cold breakfast, then we meander down to the playroom, and I let her crawl around for a while. Then, we return, and she naps, while I attempt to find something decent to watch on TV. By then its lunch time! After lunch I usually nap, while holding Evie. Then, awaken to watch the most ridiculous show in the history of shows: Lets make a Deal. By then she usually wakes up and we play and read. It wasn't too bad this time. Really.
I just hope someday soon, our life won't be so, day to day. I feel like thats how we have to live. We never know what tomorrow will hold. Its hard to make commitments. Its hard to make plans. We can't go out of town. Heck, on Patrick's days off we usually end up staying at home to catch up with one another. Last week I intended to clean both the laundry room and our back porch. Neither got done. Its not for lack of trying, I assure you. Its just that hard with Evie.
I am so thankful to announce, if you don't already know, that we got medicaid back. It is such a relief. We no longer have to worry about enteral feeding supplies, or lack home health. Too, we don't have to pay out the wazzoo for this past hospital stay. It is just a HUGE sigh of relief.
Well, I am going to go to bed. In my own bed. With my 2 snuggly puppies, under my own sheets. I may just sink into the mattress.
I just hope someday soon, our life won't be so, day to day. I feel like thats how we have to live. We never know what tomorrow will hold. Its hard to make commitments. Its hard to make plans. We can't go out of town. Heck, on Patrick's days off we usually end up staying at home to catch up with one another. Last week I intended to clean both the laundry room and our back porch. Neither got done. Its not for lack of trying, I assure you. Its just that hard with Evie.
I am so thankful to announce, if you don't already know, that we got medicaid back. It is such a relief. We no longer have to worry about enteral feeding supplies, or lack home health. Too, we don't have to pay out the wazzoo for this past hospital stay. It is just a HUGE sigh of relief.
Well, I am going to go to bed. In my own bed. With my 2 snuggly puppies, under my own sheets. I may just sink into the mattress.
Monday, April 18, 2011
Giving it to God
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.
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.
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.
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