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We ended up recieving:
The Bipap ST by respironics with the minime facial interface with the settings of 20/5
The Inexsufflator (cough assist) that the hospital had which made it easy for us to transition to with the settings +20/-30
The Nebulizer for her Albuterol
And the Suction machine
Since we've been home Bella has been as happy and giddy as can be :D She seems to be enjoying the fact that shes back in her room, sleeping in her bed, and playing with all her toys!
The first 24hrs were more managable than I had expected. I guess the hospital allowing us to be so hands-on while we were there really paid off. I have stuck to the routine that we had at the hospital which also has been great because it keeps me on schedule and doesn't confuse Bella.She's been gaining weight steadily and we definetly are making sure she doesnt plump up because the fatter the baby the more difficult it is for them to move around. And with babies that have SMA we want to preserve as much of their strength and mobility as possible for as long as possible. We are trying to keep Bella at the 10th-30th percentile so her diet is monitored very closely. High calories/low fat is our approach.
The first night we spent at home we had a wonderful and resting experience. Sadly, I cant say the same about the rest lol. Bellas Mickey-Button (also known as the g-tube but we prefer to call it her Minnie-Button lol) got a small infection which caused enough discomfort to have her whimper just about the entire night. We tried cleaning it with a 1/1 solution of hydrogen peroxide and water but it didn't seem to help at all.
Luckly for us, we had a pulmonary appointment today so while we were there we asked the Pulmonologist to fill a prescription for some anti-biotics. Sure enough she did and now we are giving Bella Cephalexin every 8 hours 3 times a day. A side affect of the anti-biotics is drowsiness so hey...it'll help her sleep while fighting the infection! YAY!
We got lucky that we recieved the prescription early because had that infection gotten really bad and spread causing her to come down with a fever we would have been in deep waters. Any cold, even the mildest, it tough on these babies. Not because of the immune system (because Bellas is nice and strong thanks to the fact that she was breastfed since she was born) but because these babies aren't able to cough out any secretions that build up in their throat which can cause pnemonia and even lead to her demise.
Today we also chose her Primary Care Physician which was exciting but we have yet to met him. Ill decide if I keep him or not after our first appointment. I was really looking for a Pediatrician who was experienced and sensitive to the SMA disorder but it was time-sensitive that I get one. Reason being CCS (California Childrens Services) needed me to send back my application and the only blank question was the PCP (Primary Care Physician). And also, the SMA Patient Registry needed the PCP to finalize her application as well.
Housing is definetly still a big concern of ours especially because August 20th is just days away and we still have yet to come up with the money. I know many friends are doing everything they can to help raise money and Im praying that we get it in time. If we don't, then we have decided to move to Brandons parents house and put all of our belongings into storage :( TOTALLY NOT what I want to happen because its going to terminate not only in-home nursing assistance but also my SSI benefits.
PLEASE keep us in your prayers
We also have decided to let the cars get repossessed and eventually save enough money to buy ourselves cars later.
I assume the only benefit to living with Brandons parents would be the amount of money we would save. In 3 months we would be able to pay off all of our debt and have enough money to rent a little home. But this means having to cram the three of us in a bedroom with nothing more than an inflattable air mattress, Bella's playpen, and a small amount of our clothes.
Right now it seems like everything thats important in our life just fell apart, landed in front of us in a messy pile, and God is saying "fix it."
Our childs health
Our marriage
Our home
Our cars
Our income
Our bills
and legal issues
Things could absolutely be worse. Brandon could be cheating, all three of us could be sick, all our our state funded benefits could seize, or our dogs could come down with something so I am defitnitely still thankful for alot of blessing I have. ESPECIALLY THE FACT THE BELLA IS STILL HERE! But, like any normal person I am still very saddended by everything that is slipping between my ever so clinched fingers.
I keep telling myself "Bren, It's always darkest before dawn," but man-oh-man sometimes crawling up into a little ball, hidding under the sheets, and crying until I have nothing left to cry about sure does sound good.
But then I remember why I don't. Because the WORLD'S MOST GORGEOUS, SWEETEST AND BEAUTIFUL (both inside and out) LITTLE BEAUTY QUEEN is my daughter and she deserves for me to fight a fight that has never been seen before. Her eyes tell me to keep it up, her smile reassures me that Im doing everything I could, and her little caresses across my face and her tender grasps of my hands give me the fuel to get up everyday, make more calls, research more options, and ask more questions.
We got lucky that we recieved the prescription early because had that infection gotten really bad and spread causing her to come down with a fever we would have been in deep waters. Any cold, even the mildest, it tough on these babies. Not because of the immune system (because Bellas is nice and strong thanks to the fact that she was breastfed since she was born) but because these babies aren't able to cough out any secretions that build up in their throat which can cause pnemonia and even lead to her demise.
Today we also chose her Primary Care Physician which was exciting but we have yet to met him. Ill decide if I keep him or not after our first appointment. I was really looking for a Pediatrician who was experienced and sensitive to the SMA disorder but it was time-sensitive that I get one. Reason being CCS (California Childrens Services) needed me to send back my application and the only blank question was the PCP (Primary Care Physician). And also, the SMA Patient Registry needed the PCP to finalize her application as well.
Housing is definetly still a big concern of ours especially because August 20th is just days away and we still have yet to come up with the money. I know many friends are doing everything they can to help raise money and Im praying that we get it in time. If we don't, then we have decided to move to Brandons parents house and put all of our belongings into storage :( TOTALLY NOT what I want to happen because its going to terminate not only in-home nursing assistance but also my SSI benefits.
PLEASE keep us in your prayers
We also have decided to let the cars get repossessed and eventually save enough money to buy ourselves cars later.
I assume the only benefit to living with Brandons parents would be the amount of money we would save. In 3 months we would be able to pay off all of our debt and have enough money to rent a little home. But this means having to cram the three of us in a bedroom with nothing more than an inflattable air mattress, Bella's playpen, and a small amount of our clothes.
Right now it seems like everything thats important in our life just fell apart, landed in front of us in a messy pile, and God is saying "fix it."
Our childs health
Our marriage
Our home
Our cars
Our income
Our bills
and legal issues
Things could absolutely be worse. Brandon could be cheating, all three of us could be sick, all our our state funded benefits could seize, or our dogs could come down with something so I am defitnitely still thankful for alot of blessing I have. ESPECIALLY THE FACT THE BELLA IS STILL HERE! But, like any normal person I am still very saddended by everything that is slipping between my ever so clinched fingers.
I keep telling myself "Bren, It's always darkest before dawn," but man-oh-man sometimes crawling up into a little ball, hidding under the sheets, and crying until I have nothing left to cry about sure does sound good.
But then I remember why I don't. Because the WORLD'S MOST GORGEOUS, SWEETEST AND BEAUTIFUL (both inside and out) LITTLE BEAUTY QUEEN is my daughter and she deserves for me to fight a fight that has never been seen before. Her eyes tell me to keep it up, her smile reassures me that Im doing everything I could, and her little caresses across my face and her tender grasps of my hands give me the fuel to get up everyday, make more calls, research more options, and ask more questions.
If there is one blessing that God has bestowed upon me that I am most grateful for its my children and all that they bring to my life. It truely is astonishing just how much your children will transform your life for the better if you give them the chance.
As for tonight, Im giving my problems to God and letting him guide me threw this mess. Only he knows what lies in store for me and my family. He is the only one I trust right now and the only one I depend on because God never lets you down...he only make you sweat it out for a while.
I feel ashamed that I tend to seek God's assistance and miracles when Im in dier need
of him. Not to mention how greedy it is of me to expect him to deliver. But he is my father, my creator, and and my savior and he forgives. I'm in good hands with him and with my faith and his guidance, I shall overcome this mountain with the same strength, self-respect, diginity, and confidence that I have overcome the rest of them with.
Please keep us in your prayers and think of us often. A little babies life is on the line and every prayer makes a difference.
God Bless you all,
Bren
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