So i know I have said I would post an updating blog and I am so sorry that it has taken me this long to get around to it. I have been very busy but that never ends I found out so I decided that now was the time to take care of this. About little miss Lilybug, she is doing wonderfuly better. They started her on her beta-blocker while she was in the hospital and went up on it and then went down on her amiodarone which is for her other arrythmia. She was having tons of PVC's while we were there but they reasured me that they weren't all real, which I knew that but I knew when they were because of how she was acting. She would start to breath fast and her heart rate would go crazy, she would turn pale and her o2 would drop and then as quick as it would start, it would be over. Durring those times she would open her eyes and look at me with those big pleading blue eyes like "Mama, help me, this doesnt feel good, make it stop." Then she would cry, they said they would scare her, really? I didnt know....cause they scared the crap out of me. Once they got her meds situated she started to come around to her old self to an extent.
The thing with being on the Beta-blocker is it makes her sleepy, like that isnt a problem. HAHA...yeah...she slept enough before this medicien and here we are adding more sleeping to her day. They said as she gets use to her meds she will come out of it....i just want to be able to see her baby blues more, i want to see that angelic smile more. She has began to laugh and what I wouldnt give to hear more of it, instead i get to listen to the quick pase of her breathing as she studies the back of her eyelids inspecting them for cracks.
Her narrowing is not causing any of this, so that is the relife of all of this but at the same time we are all on our toes just waiting and watching. When will things ever be just another ordinary day in the McLaughlin house? Most likely never again, you dont have ordinary days once you are blessed with a heart baby. your stress level hits the roof and you have constant worry.....I would love to have one stess free day but for the expense i would have to give for it, i will pass on it. I will just thank the Lord God Almighty for everything once again and remind myself I truly am blessed. Things could always get worse so I think of our life as good right now.
Now on another note....not so great news!
Major panic attack has set in, tears are my cheeks best friend at the moment. I talked with are in home healthcare and they have told me that my insurance doesn't cover Lilys formula which is the very oh so pricey Nutramagin, they told me for them to deliever me 8 cans of it a month it will cost us $288. We dont have that type of money, we are lucky if we have that for groceries each month. We cant get food stamps because we are on WIC, you get one or the other, not both. We are drowing in hospital bills, medical bills in general. Where do we start? There will be no way we can pay these off. We are trying to apply to SSI and a few other places but it takes a while to get accepted to those. I am afraid of the future. How do you get a job when your spouse cant tie down regular hours at his. I need a job but I dont see how it is possible, and Chris cant work 2 or he wont get an ounce of sleep. I cry because I dont want my boys raised like I was, I want them to have so much more, I know they will have our love and that should be well enough for them, but you all know how kids are these day. How do you explain to them it was either their happiness or their sisters life? How do you get them to understand that? They wont for a long time and by that time I fear it will be to late....Oh God...what are we to do? Crying solves nothing....anger solves nothing, determination does....Strength is my weakness right now....Im so tired...so exhausted...I dont even know where to begin anymore....where do you begin? How do you get through this? WHY....WHY .....WHY!!!!!!!!!!???????!!!!!!!!!!!!!!
The thing with being on the Beta-blocker is it makes her sleepy, like that isnt a problem. HAHA...yeah...she slept enough before this medicien and here we are adding more sleeping to her day. They said as she gets use to her meds she will come out of it....i just want to be able to see her baby blues more, i want to see that angelic smile more. She has began to laugh and what I wouldnt give to hear more of it, instead i get to listen to the quick pase of her breathing as she studies the back of her eyelids inspecting them for cracks.
Her narrowing is not causing any of this, so that is the relife of all of this but at the same time we are all on our toes just waiting and watching. When will things ever be just another ordinary day in the McLaughlin house? Most likely never again, you dont have ordinary days once you are blessed with a heart baby. your stress level hits the roof and you have constant worry.....I would love to have one stess free day but for the expense i would have to give for it, i will pass on it. I will just thank the Lord God Almighty for everything once again and remind myself I truly am blessed. Things could always get worse so I think of our life as good right now.
Now on another note....not so great news!
Major panic attack has set in, tears are my cheeks best friend at the moment. I talked with are in home healthcare and they have told me that my insurance doesn't cover Lilys formula which is the very oh so pricey Nutramagin, they told me for them to deliever me 8 cans of it a month it will cost us $288. We dont have that type of money, we are lucky if we have that for groceries each month. We cant get food stamps because we are on WIC, you get one or the other, not both. We are drowing in hospital bills, medical bills in general. Where do we start? There will be no way we can pay these off. We are trying to apply to SSI and a few other places but it takes a while to get accepted to those. I am afraid of the future. How do you get a job when your spouse cant tie down regular hours at his. I need a job but I dont see how it is possible, and Chris cant work 2 or he wont get an ounce of sleep. I cry because I dont want my boys raised like I was, I want them to have so much more, I know they will have our love and that should be well enough for them, but you all know how kids are these day. How do you explain to them it was either their happiness or their sisters life? How do you get them to understand that? They wont for a long time and by that time I fear it will be to late....Oh God...what are we to do? Crying solves nothing....anger solves nothing, determination does....Strength is my weakness right now....Im so tired...so exhausted...I dont even know where to begin anymore....where do you begin? How do you get through this? WHY....WHY .....WHY!!!!!!!!!!???????!!!!!!!!!!!!!!
3 comments:
Lilyana is so blessed to have you as her mommy! I pray for you daily. Remember Isaiah 26:3 "Thou wilt keep him in perfect peace whose mind is stayed on Thee."
Of course I remember you I'm glad that you commented me back I thought that maybe it meant you only wanted close friends and family on your blog. Your family is beautiful! Lily is so adorable! I'm glad she is doing better! I'm sorry everything else inst going better for you though. Well as long as you dont mind I would love to check in on you guys. I think your amazing!
Lily is absolutely BEAUTIFUL and what a sweet spirit that surrounds her. I am so sorry about the medical bill frustrations. We will run out of our insurance money for Eden at the end of June and I am in a complete panic because I don't know how we are going to do it. Some things are so scary. Continue to have faith and hope that the Lord will provide a way. He sent you a very special little princess and I believe that He will help you make it through.
Love from one heart mommy to another,
Keisa
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