News --
(It has been four months since Brian’s accident.)
Hi Everyone,
We had another meeting on Monday. Social Services, a neurosurgeon, a neurologist, and a pulmonary Dr and the floor manager (nurse manager) were all in attendance. I was really looking forward to finally having some answers - finally having a direction to move in -finally knowing when Brian’s skull was going to be replaced…
I have no more answers now than I did at this time yesterday. It’s all very frustrating.
Here’s what we know for sure-
Brian has bacteria in his system called Methicillin Resitant Staphylococcus Aureus - MRSA. Here’s the definition: MRSA are antibiotic-resistant organisms that can lead to wound infections, urinary tract infections, and pneumonia, among other conditions. The risk of infection with MRSA is low and typically the organism is spread from one individual to another through contact with health care workers.
Normally our bodies are able to fight MRSA – however, since Brian has been immobile for so long, and cannot cough on his own, his body cannot fight this bacteria. Any surgical options at this point are too dangerous. Doing so could allow more bacteria and infections into his system. Since he is not walking around (and he can always were the helmet for protection), there doesn’t seem to be any medical reason that they have to replace his skull- the only reason to replace it at this time would be strictly cosmetic and that’s not a reason to take the risk. So for now, he still has the front part of his skull safely tucked away in the tissue of his abdomen. Dr. Chitaly, the neurosurgeon, has assured us that it will be perfectly viable for a long time – so even if it is a year from now that they give the go ahead for surgery, the skull will be alive and healthy.
We also know that the EEG and MRI scans haven’t changed. He still has brain activity – which we knew because he’s awake and moving – but it is considered slow and the MRI shows damage to the brain tissue. At this point, again the doctors are giving us a “poor prognosis”. We knew all of this going into the meeting.
But, we did get somewhat good news – Dr. Holmes, the neurologist, has started Brian on a drug called Provigil. This is in the same family as Ritalyn and helps people to focus and pay attention. He has been on this for a couple of weeks now and we can definitely tell a difference. Brian seems to be a little more “there” and looking at us more and more. Even Dr. Holmes said that he wasn’t changing the prognosis but that he could see slight changes for the better. Coming from a doctor that’s a great victory!
We also had a chance to meet the physical therapist that has been working with Brian. She is a real cheerleader for him and is putting him through a really difficult workout everyday. Unfortunately, Brian has been labeled as being not medically able to benefit from physical therapy. This means that since he can’t participate, he is not given really strenuous therapy. That is a real shame and one that we are hoping to change but in the meantime, his therapist is doing range of motion exercises with him everyday. Usually he pulls his legs very tightly to his body but after the exercises the other day, he was laying flat on the bed! He was not very happy about that though. But she talks to him and really seems to care about him and we are grateful for her – even though we can’t remember her name she is special to us.
And she is waiting for any sign from Brian of participation and purposeful movement. At that point, physical therapy will step in and take over. And he will be getting the full regimen of exercise – sitting up in bed, etc. While we were there the other day, I leaned down to kiss Brian on the cheek and he puckered his lips! The therapist and Jamie were in the room and were freaking out…I asked him for a kiss and he puckered three different times. The therapist was immediately going to report that to the physical therapy team and see if that would be enough to get them in there….we are crossing our fingers for that.
We know that with every step forward there seems to be two steps back but at this point Brian seems to have finally stabilized. His fevers are down and some days he doesn’t have a fever at all. The highest has been around 99 to 100 and that’s quite an improvement. He is awake for longer periods of time and looks at people a little more. And the swelling in his brain has gone down drastically.
We are still hoping every day that he will start to make “purposeful movements” – at that point, the doctors will start to pay attention to him.
The bottom line is that we are still waiting.
But at least now we know better what we are waiting for. We need Brian’s Medicaid approved ASAP. I still have not received the letter from them. So, if you’re reading this and know of any way at all to speed up the process, or if you know a politician, or a multi- millionaire just looking for a good cause, please let us know! Any help resources, connections, avenues you can lead me to will be very much appreciated.
We can move him to a better facility once Medicaid is approved. One that will provide daily Physical Therapy, encouragement, and that has the skills to give Brian every opportunity to come back. The Dr’s at Kennestone have basically given up on him. We need to get him moved out of there ASAP. The longer he stays there, the harder it will be for him to come back.
In the meantime, please continue to pray for Brian. He is such a fighter and we know that if given the chance, he can fight back from this.
Thank you again for all your prayers.
Jessica
P.S.
The doctors, physical therapist, and nurses still tell us that the more we stimulate Brian the better he has of coming back to us. For this reason, we still beg you all to try to visit Brian. I know that everyone is busy and that it’s no fun to go to the hospital. And if you haven’t been or if it’s been awhile, you may be afraid of what you’ll find. But it’s still Brian….he’s a lot quieter so that’s strange! :) But it’s still Brian. The same Brian that you played foosball with or video games with. The same Brian that hung out and had a beer with you. The same Brian that talked too loud and laughed at everything. And he really needs us all to rally around him now.
Please try to go and talk to him. Make him look at you and tell him to blink at you. Hold his hand and rub his arms.
Please help us to help Brian. And one day I know that he will come back to thank you. And Livi and I will do the same.
Hi Everyone,
We had another meeting on Monday. Social Services, a neurosurgeon, a neurologist, and a pulmonary Dr and the floor manager (nurse manager) were all in attendance. I was really looking forward to finally having some answers - finally having a direction to move in -finally knowing when Brian’s skull was going to be replaced…
I have no more answers now than I did at this time yesterday. It’s all very frustrating.
Here’s what we know for sure-
Brian has bacteria in his system called Methicillin Resitant Staphylococcus Aureus - MRSA. Here’s the definition: MRSA are antibiotic-resistant organisms that can lead to wound infections, urinary tract infections, and pneumonia, among other conditions. The risk of infection with MRSA is low and typically the organism is spread from one individual to another through contact with health care workers.
Normally our bodies are able to fight MRSA – however, since Brian has been immobile for so long, and cannot cough on his own, his body cannot fight this bacteria. Any surgical options at this point are too dangerous. Doing so could allow more bacteria and infections into his system. Since he is not walking around (and he can always were the helmet for protection), there doesn’t seem to be any medical reason that they have to replace his skull- the only reason to replace it at this time would be strictly cosmetic and that’s not a reason to take the risk. So for now, he still has the front part of his skull safely tucked away in the tissue of his abdomen. Dr. Chitaly, the neurosurgeon, has assured us that it will be perfectly viable for a long time – so even if it is a year from now that they give the go ahead for surgery, the skull will be alive and healthy.
We also know that the EEG and MRI scans haven’t changed. He still has brain activity – which we knew because he’s awake and moving – but it is considered slow and the MRI shows damage to the brain tissue. At this point, again the doctors are giving us a “poor prognosis”. We knew all of this going into the meeting.
But, we did get somewhat good news – Dr. Holmes, the neurologist, has started Brian on a drug called Provigil. This is in the same family as Ritalyn and helps people to focus and pay attention. He has been on this for a couple of weeks now and we can definitely tell a difference. Brian seems to be a little more “there” and looking at us more and more. Even Dr. Holmes said that he wasn’t changing the prognosis but that he could see slight changes for the better. Coming from a doctor that’s a great victory!
We also had a chance to meet the physical therapist that has been working with Brian. She is a real cheerleader for him and is putting him through a really difficult workout everyday. Unfortunately, Brian has been labeled as being not medically able to benefit from physical therapy. This means that since he can’t participate, he is not given really strenuous therapy. That is a real shame and one that we are hoping to change but in the meantime, his therapist is doing range of motion exercises with him everyday. Usually he pulls his legs very tightly to his body but after the exercises the other day, he was laying flat on the bed! He was not very happy about that though. But she talks to him and really seems to care about him and we are grateful for her – even though we can’t remember her name she is special to us.
And she is waiting for any sign from Brian of participation and purposeful movement. At that point, physical therapy will step in and take over. And he will be getting the full regimen of exercise – sitting up in bed, etc. While we were there the other day, I leaned down to kiss Brian on the cheek and he puckered his lips! The therapist and Jamie were in the room and were freaking out…I asked him for a kiss and he puckered three different times. The therapist was immediately going to report that to the physical therapy team and see if that would be enough to get them in there….we are crossing our fingers for that.
We know that with every step forward there seems to be two steps back but at this point Brian seems to have finally stabilized. His fevers are down and some days he doesn’t have a fever at all. The highest has been around 99 to 100 and that’s quite an improvement. He is awake for longer periods of time and looks at people a little more. And the swelling in his brain has gone down drastically.
We are still hoping every day that he will start to make “purposeful movements” – at that point, the doctors will start to pay attention to him.
The bottom line is that we are still waiting.
But at least now we know better what we are waiting for. We need Brian’s Medicaid approved ASAP. I still have not received the letter from them. So, if you’re reading this and know of any way at all to speed up the process, or if you know a politician, or a multi- millionaire just looking for a good cause, please let us know! Any help resources, connections, avenues you can lead me to will be very much appreciated.
We can move him to a better facility once Medicaid is approved. One that will provide daily Physical Therapy, encouragement, and that has the skills to give Brian every opportunity to come back. The Dr’s at Kennestone have basically given up on him. We need to get him moved out of there ASAP. The longer he stays there, the harder it will be for him to come back.
In the meantime, please continue to pray for Brian. He is such a fighter and we know that if given the chance, he can fight back from this.
Thank you again for all your prayers.
Jessica
P.S.
The doctors, physical therapist, and nurses still tell us that the more we stimulate Brian the better he has of coming back to us. For this reason, we still beg you all to try to visit Brian. I know that everyone is busy and that it’s no fun to go to the hospital. And if you haven’t been or if it’s been awhile, you may be afraid of what you’ll find. But it’s still Brian….he’s a lot quieter so that’s strange! :) But it’s still Brian. The same Brian that you played foosball with or video games with. The same Brian that hung out and had a beer with you. The same Brian that talked too loud and laughed at everything. And he really needs us all to rally around him now.
Please try to go and talk to him. Make him look at you and tell him to blink at you. Hold his hand and rub his arms.
Please help us to help Brian. And one day I know that he will come back to thank you. And Livi and I will do the same.
posted by Jamie at 2:21 PM
7 comments
