Finally, I got to have a phone conversation with Dr Halper from the International Brain Research Foundation. He works with Dr De Fina and he is the doctor that came out and did the evaluation and testing on Timmy.
He started off by telling me that most of the patients they work with are far less cognitive than Timmy, meaning they are in comas, vegetative states etc.. And then he told me they have new programs and some are fairly experimental. They are suggesting we try some neutracuticals. I will be in touch with Jason, in charge of financial, to talk more about our options with that. And I think he mentioned that there may be other drugs that could help with speech.
I asked about what the tests showed and Dr Halper said the results were very good. The brain waves looked good except in a couple of spots. He said there were some mild abnormalities on his left side and that would make sense, because that is the side where the injury occurred. I then asked him if the tests were able to show what parts of his brain might be affected and he said that areas that involve speech were affected.
After I post this update, I will be emailing him Timmy's Kaiser doctors contact information. He is going to try to contact them to talk more to them.
It's just so amazing to me how resilient the brain can be. In the beginning, we were told that the original CT scans showed that the left side of his brain was dark and could not recover. We were also told that there was a lot of brain stem damage that was not repairable. We were told Timmy would never breath on his own... he does. We were told his right side would be paralyzed, it's not. We were told he'd be blind in one eye, he's not. I guess the brain is smarter than we think? Thank you everyone for believing in Timmy and believing in miracles. Thank you for the many prayers that still continue and for the good thoughts sent Timmy's way. And thank you for believing that Timmy will continue to get better. And even if we don't get the Kaiser doctors assistance, I was telling Isaac that Timmy's come this far on his own and he can go further. And of course, I believe we have God on our side. We have the winning team.
Believe :)
Dawn
December 10, 2010
December 9, 2010
Doctor updates
Update anyone? Last update, I told everyone that Timmy was to have appointments with two of his Kaiser doctors. The first doctor being the one in charge of his physical therapy and the second, his neurologist.
We met with the Medical Physical therapy doctor a week or so ago. The appointment opened with the question "What do you want from this appointment". That should have been my first clue that I was going to leave disappointed. Is it too much for a doctor to be able to tell his patient what he can do for him? Out of the whole hour we spent there, the entire time was spent discussing why his insurance won't cover therapy for him. About 2 minutes, at the most, was spent on examining Timmy. I went in wanting Timmy to be referred to Kaiser Vallejo, where their specialty is brain injuries. I was told Timmy would have to be able to tolerate 3 hrs of therapy a day, which he is nowhere near at this time. I asked how he was expected to get to that point when he is getting pretty much NO therapy now.... then I got to hear more about insurance crap. So if Timmy isn't going to be getting PT or OT at the facility he's at now, he needs to come home where I can teach him the best I can and he can be part of his family again. We discussed that and the options he came up with are:
1 - Inpatient referral to Kaiser Vallejo for short term rehab (few weeks) with the understanding that it is short-term and to prepare him and his family to bring him home. But there is a chance they won't take him.
2 - Same scenario, but referral to Santa Clara Valley Medical. BUT in order to go there, we would have to drop Kaiser insurance, as Kaiser won't pay for SCVM, but Tim's Medi-cal would. But there is a chance they won't take him either. And if we dropped Kaiser, Timmy would only have medi-cal when he came home and I'm not sure we'd be able to find him a good doctor or if medi-cal would cover ongoing PT, which I think is so important at this time.
3 - Or, the sub-acute facility can teach me how to take care of Timmy and he could be discharged from there.
As much as I want Timmy home NOW, I would also like more of an opinion from professionals that work with brain injury patients to see him and possibly offer opinions and suggestions. AND I want assurance of ongoing therapy for him. (A little side note.. this doctor called me again this morning to see if I'd made any decisions yet regarding bringing Timmy home. By the end of the conversation, I got him to agree to order OUT patient therapy for Timmy, 1 day a week. I guess Kaiser will pay for out patient therapy, but not inpatient therapy where he is now. The only catch is, I have to transport him to Kaiser. No problem, I can do that and I will. At least he'll get some therapy while working on getting him home. I pray that they may try things that haven't been tried yet and answer all the questions I have regarding what I can do to help more.
Today, we met with Timmy's neurologist. The last time she saw him was over a year ago. She seemed genuinely happy to see him and wanted to know how he was doing and wanted to see everything he can do now. At the end of the visit, as I left, I felt like I really didn't get any answers as far as her opinion goes, so I went back to see her again, leaving Timmy in the waiting room. I told her I needed more of an opinion or summary from her, because there are a lot of people following Timmy's story and that other medical professionals will be asking me and I needed something to tell them. She said that yes, Timmy has progressed and that he's alert and communicates. I asked her if she thought there was any kind of testing we might do and she told me that she'd actually thought about that, but that she didn't think a CT scan would show much. I then spoke from my heart and told her that I know there are medical opinions, and that I'm not saying Timmy has to be 100% (thought I do believe he can be), but that he does deserve to progress further for a better quality of life, even if it's just operating an electric wheelchair, using a remote control or even playing video games. I added that even his neurosurgeon, who didn't think Timmy was going to pull through, has been known to say that Timmy is going to be a miracle. She looked at me then and told me that she thought Timmy was a miracle too. She wants to continue to be a part of Timmy's team. But it seems that there is not a lot she can do on her end at this time. The therapy has to go through that other doctor.
So, on top of figuring out which road to take to bring him home, I'm finding out that In Home Support Services might not be as easy as I thought it would be. The waiting list is 2-3 months for them to come out to his home and evaluate before they approve coverage. And I have to have a discharge date before I can move forward on that. I know it's not a guarantee, but I was hoping In Home Support Services would be my primary source of income to stay home and be Timmy's caregiver. By the time I finished my conversation with the nice lady at that agency this morning, I was telling her that I felt like just going and picking Timmy up in a van and bringing him home and then someone would have to figure out how he was going to be taken care of from there. So I don't know why things have to be so complicated. I just want some PT and OT for Timmy and to bring him home.
So a little good news. JUST as we rolled into the neurologists office to await her visit, the doctors from the International Brain Research Foundation called, ready to consult with Timmy's long awaited test results. So, I had to tell them I was at the neurologist appointment and they weren't able to call me back today, so now I will be talking with Dr Halper tomorrow at 330 pm. But he did tell me that the EEG showed that Timmy's brain looks good. What that means exactly? Well we will all find out tomorrow. So tomorrow, a hopefully brighter, promising update.
Thank you everyone for being part of Timmy's life and Timmy's story. Thanks for the prayers. Thanks to those few friends that know just what to say to me when I'm having a rough day. And thanks to whoever told me that Timmy is not going to be a miracle, he already is.
Dawn
Timmy's mom.
We met with the Medical Physical therapy doctor a week or so ago. The appointment opened with the question "What do you want from this appointment". That should have been my first clue that I was going to leave disappointed. Is it too much for a doctor to be able to tell his patient what he can do for him? Out of the whole hour we spent there, the entire time was spent discussing why his insurance won't cover therapy for him. About 2 minutes, at the most, was spent on examining Timmy. I went in wanting Timmy to be referred to Kaiser Vallejo, where their specialty is brain injuries. I was told Timmy would have to be able to tolerate 3 hrs of therapy a day, which he is nowhere near at this time. I asked how he was expected to get to that point when he is getting pretty much NO therapy now.... then I got to hear more about insurance crap. So if Timmy isn't going to be getting PT or OT at the facility he's at now, he needs to come home where I can teach him the best I can and he can be part of his family again. We discussed that and the options he came up with are:
1 - Inpatient referral to Kaiser Vallejo for short term rehab (few weeks) with the understanding that it is short-term and to prepare him and his family to bring him home. But there is a chance they won't take him.
2 - Same scenario, but referral to Santa Clara Valley Medical. BUT in order to go there, we would have to drop Kaiser insurance, as Kaiser won't pay for SCVM, but Tim's Medi-cal would. But there is a chance they won't take him either. And if we dropped Kaiser, Timmy would only have medi-cal when he came home and I'm not sure we'd be able to find him a good doctor or if medi-cal would cover ongoing PT, which I think is so important at this time.
3 - Or, the sub-acute facility can teach me how to take care of Timmy and he could be discharged from there.
As much as I want Timmy home NOW, I would also like more of an opinion from professionals that work with brain injury patients to see him and possibly offer opinions and suggestions. AND I want assurance of ongoing therapy for him. (A little side note.. this doctor called me again this morning to see if I'd made any decisions yet regarding bringing Timmy home. By the end of the conversation, I got him to agree to order OUT patient therapy for Timmy, 1 day a week. I guess Kaiser will pay for out patient therapy, but not inpatient therapy where he is now. The only catch is, I have to transport him to Kaiser. No problem, I can do that and I will. At least he'll get some therapy while working on getting him home. I pray that they may try things that haven't been tried yet and answer all the questions I have regarding what I can do to help more.
Today, we met with Timmy's neurologist. The last time she saw him was over a year ago. She seemed genuinely happy to see him and wanted to know how he was doing and wanted to see everything he can do now. At the end of the visit, as I left, I felt like I really didn't get any answers as far as her opinion goes, so I went back to see her again, leaving Timmy in the waiting room. I told her I needed more of an opinion or summary from her, because there are a lot of people following Timmy's story and that other medical professionals will be asking me and I needed something to tell them. She said that yes, Timmy has progressed and that he's alert and communicates. I asked her if she thought there was any kind of testing we might do and she told me that she'd actually thought about that, but that she didn't think a CT scan would show much. I then spoke from my heart and told her that I know there are medical opinions, and that I'm not saying Timmy has to be 100% (thought I do believe he can be), but that he does deserve to progress further for a better quality of life, even if it's just operating an electric wheelchair, using a remote control or even playing video games. I added that even his neurosurgeon, who didn't think Timmy was going to pull through, has been known to say that Timmy is going to be a miracle. She looked at me then and told me that she thought Timmy was a miracle too. She wants to continue to be a part of Timmy's team. But it seems that there is not a lot she can do on her end at this time. The therapy has to go through that other doctor.
So, on top of figuring out which road to take to bring him home, I'm finding out that In Home Support Services might not be as easy as I thought it would be. The waiting list is 2-3 months for them to come out to his home and evaluate before they approve coverage. And I have to have a discharge date before I can move forward on that. I know it's not a guarantee, but I was hoping In Home Support Services would be my primary source of income to stay home and be Timmy's caregiver. By the time I finished my conversation with the nice lady at that agency this morning, I was telling her that I felt like just going and picking Timmy up in a van and bringing him home and then someone would have to figure out how he was going to be taken care of from there. So I don't know why things have to be so complicated. I just want some PT and OT for Timmy and to bring him home.
So a little good news. JUST as we rolled into the neurologists office to await her visit, the doctors from the International Brain Research Foundation called, ready to consult with Timmy's long awaited test results. So, I had to tell them I was at the neurologist appointment and they weren't able to call me back today, so now I will be talking with Dr Halper tomorrow at 330 pm. But he did tell me that the EEG showed that Timmy's brain looks good. What that means exactly? Well we will all find out tomorrow. So tomorrow, a hopefully brighter, promising update.
Thank you everyone for being part of Timmy's life and Timmy's story. Thanks for the prayers. Thanks to those few friends that know just what to say to me when I'm having a rough day. And thanks to whoever told me that Timmy is not going to be a miracle, he already is.
Dawn
Timmy's mom.
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