Support Dawn's Treatment and Recovery
Donation protected
Hi everyone! You may remember us from a couple of years ago when we started our first GoFundMe for our mom, Dawn, who was undergoing some pretty serious medical stuff. For those of you who don't know, our mom was diagnosed with an arachnoid cyst on her cerebellum in May of 2016. After having it removed, she developed hydrocephalous and needed a shunt implanted to help drain the excess fluid. Unfortunately, she has encountered every complication you can imagine which has led to over a dozen brain surgeries (and a few abdominal ones). Her neurosurgeon team has been trying to figure out why this keeps happening (they haven't had a case like this in over two decades and usually when there are multiple shunt revisions it's in babies). I wish I could be updating you with better news about a smooth and easy recovery but unfortunately that is not the case.
It would take me forever to update you on everything that has happened between then and now, so I am just going to share what has happened most recently and what brings me to reaching out to you all today.
Monday, March 16--Dawn has her first ever seizure at home and my sister, Sami, has to administer care while waiting for EMTs. When she gets to the hospital and has tests done, it's determined that she has an infection on the brain which is what most likely caused the seizure and will need surgery to remove her shunt (basically the shunt becomes compromised and must be removed otherwise the infection cannot completely go away).
Tuesday, March 17--Dawn has brain surgery to remove the shunt. We are told she will be without a shunt until the infection clears (hopefully a couple of days to a week).
Wednesday, March 18--I receive a call from Dawn's neurosurgeon stating she is not doing well without a shunt. While she's not in a coma, she's becoming unresponsive. A CAT scan shows that the fluid isn't draining at all and thus putting pressure on her brain. He says emergency surgery must be done to insert an external VP shunt.
Thursday, March 19-Sunday, March 22--Dawn remains in ICU with an external VP shunt being seen by both her neurosurgeon and an infectious disease doctor. Normally, they would treat this infection with a penicillin-based antibiotic, but Dawn is highly allergic so they must chose something else that takes a bit longer to work. Also, a PIC line is inserted for her antibiotics and blood draws.
Monday, March 23--Dawn has her 16th brain surgery to put an internal shunt in once more. The neurosurgeon places it on a different part of her head to keep away from the infection sight. She will continue to be treated with IV antibiotics.
Friday, April 3--Dawn is discharged from the hospital but must continue to receive IV antibiotics at home through her PIC line as well as PT and OT to build up strength after being in bed for over two weeks.
I spent all of yesterday on the phone for hours between the hospital nurse coordinator, her insurance, and home agencies. While she was medically discharged, according to the nursing coordinator despite needing OT and PT at home, no agencies accept her insurance. I had the coordinator give me a list of agencies they contacted and started calling them myself. Lo and behold, one of the agencies DOES take Dawn's insurance and can see her and provide care at home that she needs. They explained that there was a misunderstanding between the parties which is why they said they originally couldn't proved home care. Side note and PSA, this is why it is SO, SO important to self advocate!
The reason why we are setting up this GoFundMe is because our mom is incurring a lot of medical bills. Today, I was called by the infusion company that is providing her antibiotics and told we needed to pay up front for the meds otherwise they wouldn't be delivered. I asked for a payment plan or even a two-week span to pay and was told 'no'. So I ended up having to pay that out of pocket myself.
Also, given her unstableness and the seizure she sustained a couple of weeks ago (thank goodness while Sami was home at the time) we thought it best for her to get a medical alert button with fall detection as an extra precautionary measure for her safety.
These two things alone (just for today) totaled nearly $1000. I know she has a couple of medical bills from a previous surgery at the end of last year that are about $700 if I remember correctly. Obviously, having just been released today, we have yet to receive any medical bills from this hospital stay but we are anticipating them in our total. Whatever doesn't get used for medical treatment will be used for Dawn's cost of living as she is on disability and has only that to live on.
I understand these are unprecedented times, we are all dealing with a lot of anxiety and stress right now, which is why even creating this is done as a last resort. I have been fighting hard for her, hours every day, trying to get her the care she needs for a successful recovery. If you can donate anything, even just $1, it would be so incredibly helpful. We still have some "Support Dawn" rubber bracelets from our last campaign so if you donate and would like one, please message Sami or me on Facebook with your address and we'll send one out to you. If you can't afford to donate, we completely understand, but if you wouldn't mind sharing our campaign or offering a prayer, healing thought, or some positive energy, that would go such a long way.
Your support over the years has truly, truly meant the world to Dawn, Sami, and me. We honestly don't know what we would do without you. In our darkest times, you have pulled us into the light and wrapped us up in your love and for that we will be eternally grateful.
Please be safe and healthy. Make sure you are practicing social distancing and only go out for mandatory necessities. And don't forget to wash your hands!
All my love,
Rachel
It would take me forever to update you on everything that has happened between then and now, so I am just going to share what has happened most recently and what brings me to reaching out to you all today.
Monday, March 16--Dawn has her first ever seizure at home and my sister, Sami, has to administer care while waiting for EMTs. When she gets to the hospital and has tests done, it's determined that she has an infection on the brain which is what most likely caused the seizure and will need surgery to remove her shunt (basically the shunt becomes compromised and must be removed otherwise the infection cannot completely go away).
Tuesday, March 17--Dawn has brain surgery to remove the shunt. We are told she will be without a shunt until the infection clears (hopefully a couple of days to a week).
Wednesday, March 18--I receive a call from Dawn's neurosurgeon stating she is not doing well without a shunt. While she's not in a coma, she's becoming unresponsive. A CAT scan shows that the fluid isn't draining at all and thus putting pressure on her brain. He says emergency surgery must be done to insert an external VP shunt.
Thursday, March 19-Sunday, March 22--Dawn remains in ICU with an external VP shunt being seen by both her neurosurgeon and an infectious disease doctor. Normally, they would treat this infection with a penicillin-based antibiotic, but Dawn is highly allergic so they must chose something else that takes a bit longer to work. Also, a PIC line is inserted for her antibiotics and blood draws.
Monday, March 23--Dawn has her 16th brain surgery to put an internal shunt in once more. The neurosurgeon places it on a different part of her head to keep away from the infection sight. She will continue to be treated with IV antibiotics.
Friday, April 3--Dawn is discharged from the hospital but must continue to receive IV antibiotics at home through her PIC line as well as PT and OT to build up strength after being in bed for over two weeks.
I spent all of yesterday on the phone for hours between the hospital nurse coordinator, her insurance, and home agencies. While she was medically discharged, according to the nursing coordinator despite needing OT and PT at home, no agencies accept her insurance. I had the coordinator give me a list of agencies they contacted and started calling them myself. Lo and behold, one of the agencies DOES take Dawn's insurance and can see her and provide care at home that she needs. They explained that there was a misunderstanding between the parties which is why they said they originally couldn't proved home care. Side note and PSA, this is why it is SO, SO important to self advocate!
The reason why we are setting up this GoFundMe is because our mom is incurring a lot of medical bills. Today, I was called by the infusion company that is providing her antibiotics and told we needed to pay up front for the meds otherwise they wouldn't be delivered. I asked for a payment plan or even a two-week span to pay and was told 'no'. So I ended up having to pay that out of pocket myself.
Also, given her unstableness and the seizure she sustained a couple of weeks ago (thank goodness while Sami was home at the time) we thought it best for her to get a medical alert button with fall detection as an extra precautionary measure for her safety.
These two things alone (just for today) totaled nearly $1000. I know she has a couple of medical bills from a previous surgery at the end of last year that are about $700 if I remember correctly. Obviously, having just been released today, we have yet to receive any medical bills from this hospital stay but we are anticipating them in our total. Whatever doesn't get used for medical treatment will be used for Dawn's cost of living as she is on disability and has only that to live on.
I understand these are unprecedented times, we are all dealing with a lot of anxiety and stress right now, which is why even creating this is done as a last resort. I have been fighting hard for her, hours every day, trying to get her the care she needs for a successful recovery. If you can donate anything, even just $1, it would be so incredibly helpful. We still have some "Support Dawn" rubber bracelets from our last campaign so if you donate and would like one, please message Sami or me on Facebook with your address and we'll send one out to you. If you can't afford to donate, we completely understand, but if you wouldn't mind sharing our campaign or offering a prayer, healing thought, or some positive energy, that would go such a long way.
Your support over the years has truly, truly meant the world to Dawn, Sami, and me. We honestly don't know what we would do without you. In our darkest times, you have pulled us into the light and wrapped us up in your love and for that we will be eternally grateful.
Please be safe and healthy. Make sure you are practicing social distancing and only go out for mandatory necessities. And don't forget to wash your hands!
All my love,
Rachel
Organizer and beneficiary
Rachel Spinarella
Organizer
Oakland, NJ
Dawn Spina
Beneficiary