Neurosurgery
I finally edited the last blog! Thank you to everyone who reached out with the kind words, it felt so good to get it all out and to be validated! That blog was an emotional dump on my part, I would stay up at night running it all through my head and I needed to process it all. Though it was incredibly long, so many details were left out but the stress and trials were conveyed! I changed a few things in my edit, including adding the picture of my mom that made me feel like she was dying. And I removed the part about my dad. I don't wish this on anyone and I certainly don't want my dad to die anytime soon but I DO wish he put more effort into his relationship with his biological children. (a daddy issues post would be even longer than the last! haha)
So on with the story of Mom's journey.
So yes, now we have our miracle, we have to decide how to move forward and get mom back. So we conference called. While I had been burnt out, I knew she had to come back to my house, I was the one who could manage her care the best. I wanted my mom to have this surgery in Baltimore, where I live, Johns Hopkins has a Cerebral Fluid center that specializes in cases like this. In order for that to happen we had to do one of two things, either get PA to approve her out of network request OR transfer her medicaid into Maryland. I researched them both extensively. Our best bet in PA was to have her treated somewhere in Eastern or Central PA with a good facility that was closer than Pittsburgh or Erie where Dr. Warren typically refers to. We decided on Philadelphia or Hershey. The transfer of medicaid would take time, between 2 and 90 days from what I read and it was not so simple. While it is a federal program each state manages it with different rules so it can not be transferred if someone moves. The first step to change is to cancel the insurance coverage in PA, which made me very uneasy. Even if I was sure she would be approved I would be at the mercy of the state as to when she would be covered again. I hadn't had much success getting answers from the PA case workers in the past.
The day after we confirmed the diagnosis Dr. Warren the Neurologist called me. It was 3pm on a Friday. She agreed my mom needed to be closer to us and sent in the out of network request to Pennsylvania Medicaid that day before she left the hospital. She was so supportive, even when we found out they denied the request Monday she personally called the medical director to plead our case.
I decided to see who could get her in the fastest before we went forward with the application to process for Maryland Medicaid. I spent my entire Tuesday on the phone trying to decide what to do. Both John's hopkins and the Philadephia neurosurgeons said they need to have 2 weeks to review her tests and history to ensure they agreed with Dr. Warrens diagnosis before they would even have her in for a consultation and they could not give me any sort of timeline because it would depend on the severity of the case as to how urgently they would schedule surgery. I was ready to start to move to Maryland because I wanted to have an easy time taking her to the doctor that was close to home and where I could visit her daily in rehab but decided to call Hershey medical center first just to check because traffic Baltimore and Philly is always congested... Well the Doctor in Hershey had an availability this Monday, May 8th. John's Hopkins did say it would take more than a month to get a consultation and they couldn't begin to consider it until she had Medicaid. The answer was clear, we had 6 days to get her back to meet her Neurosurgeon.
I had a moment of feeling sorry for myself as I rearranged my very full schedule to fit her back in, why could I not get more that 2 week breaks from mom and ALL of this? During my woe is me crying Brett gently reminded me "wasn't this a miracle like a week ago??" It sure was but this is just the beginning of her next chapter!
SO With some Ativan and a lot of help from the airline mom flew alone back from Pensacola last night (Saturday) to Reagan in DC. I was very nervous as I drove in the rain to pick her up, My sister had told me she had gotten worse while in Florida. But as I got to D.C. the rain stopped and the sun came out and God reminded me again with 2 rainbows that everything was going to be all right!
Pray for us tomorrow as we head to Hershey to meet the surgeon!
**Can I add a side note that I had not mentioned in all of this, I have a friend on facebook that I went to high school with, Her father had knee replacement surgery around the same time my mom did (different hospital and surgeon) . He also had a very rough road to recovery since then. Her posts about her dad felt eerily similar to mine, just one frustration after another, but they made me feel like I wasn't alone going through this. Unfortunately, her father passed away this week after a long hard battle. I didn't even know him but I cried for him like he was my own dad. It just isn't fair and I feel so sorry for her and her family Because I know that it could easily be my mom too before all of this is said and done. RIP Mr. Callahan.
So on with the story of Mom's journey.
So yes, now we have our miracle, we have to decide how to move forward and get mom back. So we conference called. While I had been burnt out, I knew she had to come back to my house, I was the one who could manage her care the best. I wanted my mom to have this surgery in Baltimore, where I live, Johns Hopkins has a Cerebral Fluid center that specializes in cases like this. In order for that to happen we had to do one of two things, either get PA to approve her out of network request OR transfer her medicaid into Maryland. I researched them both extensively. Our best bet in PA was to have her treated somewhere in Eastern or Central PA with a good facility that was closer than Pittsburgh or Erie where Dr. Warren typically refers to. We decided on Philadelphia or Hershey. The transfer of medicaid would take time, between 2 and 90 days from what I read and it was not so simple. While it is a federal program each state manages it with different rules so it can not be transferred if someone moves. The first step to change is to cancel the insurance coverage in PA, which made me very uneasy. Even if I was sure she would be approved I would be at the mercy of the state as to when she would be covered again. I hadn't had much success getting answers from the PA case workers in the past.
The day after we confirmed the diagnosis Dr. Warren the Neurologist called me. It was 3pm on a Friday. She agreed my mom needed to be closer to us and sent in the out of network request to Pennsylvania Medicaid that day before she left the hospital. She was so supportive, even when we found out they denied the request Monday she personally called the medical director to plead our case.
I decided to see who could get her in the fastest before we went forward with the application to process for Maryland Medicaid. I spent my entire Tuesday on the phone trying to decide what to do. Both John's hopkins and the Philadephia neurosurgeons said they need to have 2 weeks to review her tests and history to ensure they agreed with Dr. Warrens diagnosis before they would even have her in for a consultation and they could not give me any sort of timeline because it would depend on the severity of the case as to how urgently they would schedule surgery. I was ready to start to move to Maryland because I wanted to have an easy time taking her to the doctor that was close to home and where I could visit her daily in rehab but decided to call Hershey medical center first just to check because traffic Baltimore and Philly is always congested... Well the Doctor in Hershey had an availability this Monday, May 8th. John's Hopkins did say it would take more than a month to get a consultation and they couldn't begin to consider it until she had Medicaid. The answer was clear, we had 6 days to get her back to meet her Neurosurgeon.
I had a moment of feeling sorry for myself as I rearranged my very full schedule to fit her back in, why could I not get more that 2 week breaks from mom and ALL of this? During my woe is me crying Brett gently reminded me "wasn't this a miracle like a week ago??" It sure was but this is just the beginning of her next chapter!
SO With some Ativan and a lot of help from the airline mom flew alone back from Pensacola last night (Saturday) to Reagan in DC. I was very nervous as I drove in the rain to pick her up, My sister had told me she had gotten worse while in Florida. But as I got to D.C. the rain stopped and the sun came out and God reminded me again with 2 rainbows that everything was going to be all right!
Pray for us tomorrow as we head to Hershey to meet the surgeon!
**Can I add a side note that I had not mentioned in all of this, I have a friend on facebook that I went to high school with, Her father had knee replacement surgery around the same time my mom did (different hospital and surgeon) . He also had a very rough road to recovery since then. Her posts about her dad felt eerily similar to mine, just one frustration after another, but they made me feel like I wasn't alone going through this. Unfortunately, her father passed away this week after a long hard battle. I didn't even know him but I cried for him like he was my own dad. It just isn't fair and I feel so sorry for her and her family Because I know that it could easily be my mom too before all of this is said and done. RIP Mr. Callahan.
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