It has really been a rough couple of months. I sat in my office tonight after another stressful and nonstop day, and I looked at the piles and piles of paper that I need to start to organize. Much of it has to do with Hannah but not all of it. I would need about 24 collective hours just to get that organized (and that doesn’t even count the other rooms that still need unpacking and organizing). Each day more piles up as more comes in.
Our insurance company extended our home nursing by a few more days. Basically starting the 7 days over once she was discharged. But it is not enough. I’m really terrified as to how we are even going to exist without any nursing help after next Wednesday. Hannah is such a constant. She can not be left alone for more than a few seconds. With her movement disorder and her body’s lack of overcoming the movements, she is at constant risk for aspiration, choking, or other issues — like when she throws up from the rotavirus, we have to make sure her head it turned to the side so it comes out and she does not choke or aspirate. Her G-tube is very slow healing so we have to make sure that she doesn’t wiggle out of her infant bouncer and knock it out (it is too fresh for us to put back in on our own yet).
Hannah cannot do anything on her own anymore. She can’t sit up. She can’t hold a toy. She can’t even keep her mouth closed unless she is sleeping. Depending on how far away she is from her next Klonopin dose, she may even not be able to keep her pacifier in her mouth. It is absolutely heartbreaking. Hannah’s body is just a shell of what it once was.
The worst part is nighttime. I don’t like sleeping now. Her crib is in our room, but she only sleeps for a few hours and then lies awake squirming in the crib, her body moving constantly so she can’t go back to sleep. Even as I am typing this, I hear little cries from the crib because she is awake, and I have been typing in this paragraph for over 10 minutes already after going back and forth.
Night nursing is an option for us during these 7 days. But then we would not have any day nursing. Without day nursing, Ethan and Abigail would be pretty much pushed away because Hannah is that much of a constant. We decided that we had to have day nursing just so we can spend a few hours with Ethan and Abigail, just to try and give them some sense of normalcy. Not much, but some is better than none. It is another horrible catch-22.
What is going to happen when our 7 days of nursing is over though? I applied for Medicaid through the Katie Becket option (similar to Texas’ medically dependent children’s program) but that could be up to 9 months. I’m really nervous about how we are going to survive as a family until Hannah can become at least somewhat independent, even just for 5 to 10 minutes at a time without having to be monitored. I have a call into our case manager at Aetna to start the appeals process, but I am not expecting much since their “rules are clear.”
So here I am at 1 am, listening to Hannah awake in her crib. She is in a continuous feed right now through the night, so just taking her out of the crib is not an easy option anymore, especially since she is tied to the trach collar as well.
I guess I am just very angry right now. Incredibly, incredibly angry. I’m angry at the doctors at TCH for oversedating Hannah to the point where she may have lifelong significant neurological damage that was NOT caused by her Gauchers. I’m angry every time I see that trach in her neck because it represents that anger that she she was oversedated. I’m angry that my husband was laid off and is still unemployed even though he has sent out over 150 resumes. I’m angry that I can’t get my house in order just to feel some sense of normalcy. I am angry that we keep getting hit with one thing after another (like Daddy’s car not starting and needing to go into the shop tomorrow and Abigail’s double ear infections). I’m angry that I can’t spend time with Abby and Ethan just “being” because there is just no time to do that.
Most of all, I am angry at myself for letting the doctors at TCH do this to her. They did not do it on purpose. But I knew that it was just too many medications. I know her metabolism from her Gaucher’s made her difficult to sedate, but I just feel like I should have reached out more to someone, I have no idea who. I feel like I have let her down, let all my kids down.
I know it could be so much worse for us. I do know that. But damn do I wish I could have my Hannah back to the way she was.
Oh Carrie. I just read your post and am so sad for Hannah. She must be so miserable. You sure have a lot on your plate & I wish I lived closer to help you and be there for you. The other kids must be lost without her being able to play and laugh with them. And all on top of moving into a new house and trying to unpack. Whew. You definitely win an award from me for being SUPERMOM.
I can imagine how much paperwork is in front of you. And I HATE AETNA so much. It seems that they will finally pay after you fight and appeal with them for months. But you shouldn’t have to do it, and they know that most people don’t bother. I am fighting them to keep my disability payments coming, they want me to go back to work, and I can’t. BUT anyway–I wish you and your family so much luck, things have to change for you. I hope and pray that it happens very soon. Thanks for keeping us posted on Little Hannah. God Bless her.
I just read your latest post. I am so sorry this is all happening. But please don’t ever be angry at yourself. You are Hannah’s best adocate and an amazing mom. Be angry at the insurance companies be angry at the doctors but never at yourself. She may not be able to say it but we all can. Thank u for being you and for ur overwhelming passion and love for ur little girl! U r an inspiration.
Carrie…. I am so very sorry for ALL you are dealing with. My heart breaks. But please… allow yourself to be angry. You have every right to feel whatever you are feeling. I cannot imagine dealing with, what you are… you have been so very strong and always there for your kids. In no way did you let ANYONE down. You are amazing, and you have amazing strength. I think of all of you so very often.
Carrie,
Wow I am so very sorry for all that you have to deal with ,you sure do have a lot on your plate! You certainly have the right to feel the way you do and I swear I just dont know how you do it everyday, you are so strong Carrie but even the strongest person is gonna BREAK at some point. So dont knock yourself for how you feel!
My heart is just breaking and I am in tears reading your post this morning. I feel so sad for what Hannah has been put through and what she has to deal with now because of all the sedation at TCH.
Damn those insurance companies, I am so mad at them!!!!
Hand in there Carrie and my prayers are always with you.
Susan
I am sorry….I feel pissed off for you too…like if I where you I would sue the hospital for malpractice for drug overdosing. People think i am mean but when a doctor can’t pronounce my disease I tell them not to fucking touch me.
Its so hard Carrie. It really is. There is nothing easy and there is nothing that you could have done then that would make it easier now. If you have not applied for SSI for Hannah put that on the TOP of your to do list. You can apply by phone. I suspect she did not qualify before because of your income but I suspect that’s not an issue anymore. Getting SSI would automatically qualify you for actual medicaid as opposed to Katie Beckett I think. And actual medicaid will be done much faster the Katie Beckett.
Also make sure you talk with the EI folks when they are out. They might have a source of funding they can use to get you some immediate nursing hours.
We have a nurse babysitter that I am pretty sure is trache trained. We pay her $10/hour for baby sitting, which she recognizes may turn into the need for emergency medical care. I don’t know if that is an option for you but I am willing to share!
I am SO ANGRY right now. Carrie, as you know we are dealing with our own nightmare but I am praying so much for you guys right now. We need to get your blogs in front of Congress and the public.
What can I do to help you??? Pls tell me.
XOXOX,
Chris
Dearest Carrie. Hello from Paul.
May I say Carrie you are so wonderfully inspiraqtional and let’s not forget your Husband and children in this you are all one very special family.
I know what it’s like to live with multiple life problems My heart weep’s for you and Littlemiss Hannah, but it also sing’s out to you. For you inspire many others in difficult situations and ”YOU Carrie” are that shinig light of hope that guides Me through my darkest hours.
”In Adversity one’s inner strenghth shines through”. ”That’s You Carrie”
With Care