Elizabeth is feeling a lot better. Her nose is still full of stuff but she assures me she is ALMOST well. I think this illness is going take awhile to fully get over. She was still on Q-3 till 6am. I was getting ready to start a treatment at around 6 am she said "Nina I just want a cough and suction. I don't need nothing else" So we have went to more coughs and less nebs today since she flowing. Her treatments are going pretty well. The gunk went from thick white gunk to clear to thinner white gunk. She is still drooling like crazy
Lizzy was denied her RSV shot today . My stomach sank to my feet when I heard that. Imagine that? They said (The Dr for Medicaid here in IL ) "Since she is 5 years old her immune system should be strong enough to fight off RSV now". According to out doctor's nurse here since she said she talked to him on the phone for a long time today. So, much for all research they did about SMA Type 1s. I have contacted DR.Schroth but have not heard anything yet. So, we are in panic MODE. I dont know what else to do. Cancel all her appointments and stay home all Fall/winter? Cancel Holidays? No one comes in or out? We are careful but you never know who is coming down with what. Last year she didn't start the shots until December. If she gets RSV we are talking about several days hospitalization. If she gets RSV with having the shot it is not severe and with out the shot she could die. They just do not get it. She is only 24 pounds so its not like she will a huge amount.
On a good note the Xopenex was finally approved. I do think Senator's Rutherford's office had something to do with getting it approved. Thank you Peg if you did.
Lizzy was in her power chair tonight and ran over her Mom so she got put in the corner with her chair off for 5 minutes tonight. You should of heard her. "I can not take this any more, This is terrible, You are so mean to me Mom, Oh my gosh Nina what time is it? " She did this for 5 whole minutes non stop. I had to hide my face I was laughing so hard.
God Love her she is such a little character with so much spunk and always something to say!!
Pray Lizzy can get the RSV shot or we find a way to pay out of pocket for it. I am just sick.
2 comments:
oh my God.... These people have no clue, and should not be on any panel saying yes or no to anyone needing the RSV shot. Im glad she is feeling better, and that you got her Xopenex. I hope and pray they will pull someones head out there butts and get her the RSV shot. Sheila
I am doing what I can Sheila.
Our doc here wrote a letter today to help and is resending the LMN. I hope DR.Schroth helps. Last year she helped Lizzy get her it.
If these people at Medicaid would just realize how much it cost to hospitalize these kids they would not even think twice about approving the shots.
Another parent told me that their hospital bill was $150,000.00 last year because their child had RSV with Type 1 SMA
Thanks.
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