Brea is chest tube free! The chest tubes were removed this morning and she is doing great! They also turned her ventilator down some more and hope to take the tube out of her little nose within the next few days. It is going to be a balancing act of keeping her sedated enough so that she doesn't try to pull the canulas out of her chest yet keeping her aware enough so that she remembers to breathe on her own. They are fine tuning her blood pressure medicines today and thus far she has tolerated it well. Her kidneys are working great but her little bladder is still sleeping so she still has her foley. The doctors say she is doing great and is in great shape for surgery if they should get the call today that there is a donor heart available.
I am attaching some photos of Brea from earlier today as well as some photos of Brooke and Baker. They are staying at Danny's sister's house and are learning to ride horses! The other child in the picture is our niece Jamie ( otherwise known as Jimmie Joe :0) ) who just celebrated her 12th birthday!
Today I've spent quite a bit of time on the phone with Medicaid, social security and our health insurance company. It seems that since the Berlin heart is not an FDA approved device it won't be covered by insurance. Of course I could get someone different tomorrow and get a different answer but that is the answer that I got today from them after being passed to six different people. It seems that there are two ways that we could get Medicaid to cover Brea's medical expenses...our first option would be for us to get a divorce and our second option would be for Danny to quit his job. I was speechless when I heard our "options". Our marriage is not just a piece of paper between me and Danny...it is a covenant between the two of us and God. We've invested 15 years in our relationship, went to pre-marriage counseling before we were married and love each other and it seems so cruel for a cleark sitting behind a desk to tell us that we need to get a divorce to get Medicaid for our seriously ill child. The second option isn't exactly an option either since we have a mortgage and three kids to support. Of course hospital addimissions here at ACH offered us another option...they advised us to pack our bags and move to Arkansas where they have programs for people in our situation (we make to much to get help but can't swing an extra $3,000 a month for RX drugs). Needless to say, finding all of this out was enough to send me into tears but I eventually decided that this is just another avenue for Satan to attack our family. My faith remains in God and I know that He will provide for all our needs just as His word says He will and NO, we will not be getting a divorce!
Goodnight from Bed 6 in the CVICU at ACH. |
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Brea on Monday morning (3/26) just after getting her 3 chest tubes taken out
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