She was initially hospitalized on January 11, 2012 after a massive heart attack. I was told that she had a 99% blockage of the left artery to the heart, 100% blockage of the artery to the left leg, and a 90% blockage of the artery to the left arm. They did a coronary bypass surgery on her, but there were complications to the surgery. After they closed her up thinking the surgery was successful, she developed an irregular heart rhythm that they said would have been fatal. So the surgeons had to open her up again and they used the defibrillators on her multiple times to bring her back. They decided they could not safely close the incision area at that time and they left her open for two more days.

A week or so later, they had a femoral line in her groin that was giving bad blood pressure readings, so they decided to take that line out. When the nurse took the line out, her artery blew and she developed a pseudoaneurysm that they said was the size of half a football. This happened at around 4:00am and they gave me one of those late night phone calls you don't want to get saying that I need to come down to sign consent forms for things needing to be done. They decided she wasn't yet stable enough with her heart to do surgery on the pseudoaneurysm, so they left that be for awhile. A week later, she was able to have another surgery to drain the pseudoaneurysm and attack a wound vac to the area.

They tried to take my Mom off the ventilator, but two days after doing so, her oxygen level plummeted one night and they had to put her back on the ventilator. They later had to insert a trach in her neck so she could be on the ventilator long term. They also inserted a feeding tube into her stomach for her to receive nutrition that way.

On February 1st, I got another of those late night calls. They said that her surgical incision area was infected and they had to do another surgery to clear the area of the infection. The chief surgeon did that surgery and came out to the waiting room to speak to me. He said that it went very badly. He said that when he opened her back up, that 80% of her sternum was destroyed due to osteoperosis. He said she was infected with an infection called serratia marcesans and I later found out she also had osteomyelitis. He said he was able to get the infection out, but said they will have to leave her open for awhile yet again to make sure the infection stays clear. He said a plastic surgeon would have to come in to close her and possibly do some kind of sternum reconstruction. As I stood in the waiting room taking all of this in, I was wondering how I could put on a brave face for my Mom when I would go to see her in the room, knowing the extent of the damage done to her. I didn't know how I would do it. But the strangest thing happened when I got in the room. She was smiling and seemingly having her best day since the ordeal began. She actually cheered me up with how well she seemed to be doing. I said to myself that if she's seeming this happy about things, then I guess I don't have to feel so bad about it.

She was making significant progress at getting off the ventilator. When you reach a low level of support on the ventilator, you are then put on something they call a trach collar. That takes away the ventilator support, and leaves you breathing on your own with oxygen support pumped in through the collar. During this period, my Mom was getting to where she could stay on the collar for 12-16 hours. If you can go for 72 hours, they take you off the ventilator completely and you are OK to continue recovering on oxygen support only.

Nine more days passed and they said she still has some signs of infection but the decision was made to close her up anyway because they said they couldn't leave her incision area open that long. So on February 10th, the plastic surgeon closed the chest incision area and while having her on the table, he also did a skin graft to take skin from the left leg and use it to clean up the pseudoaneurysm area of her right leg. Everything had gone very badly, but our troubles were just beginning. My Mom had a lot of trouble after that surgery to again close the incision area. That surgery seemed to take *a lot* out of her. She didn't show any of the positive recovery signs she had shown before. She was nowhere close to getting off the ventilator, not even getting to where she could try trach collar trials that she was doing so well with prior to this surgery. The hospital decided it was time to transfer her to a long-term acute care hospital. That was when our nightmare took a drastic turn for the worse.

The day before the transfer, my Mom was smiling, happy, and blowing kisses to staff people doing nice things for her. Then the day of the planned transfer, my Mom developed a 102 fever. The hospital cancelled the transfer to keep her under further observation. Her fever went down the next day, but then went back up to 100 the day after that. They transferred her that day anyway.

One day after our arrival at the long term acute care (LTAC) hospital, my Mom went completely unresponsive in their care. The nurse at the LTAC facility attributed it to Xanax she claimed was given, but the next day I found out that Xanax was never given. They had no idea why she was unresponsive. She was in that condition for two days with nothing being done over a weekend. Then on the Monday, they started conducting some tests to determine why she was unresponsive. On that Wednesday, they removed a flexi-seal that was inserted for keeping stool out of the bed. That led to my Mom having a rectal bleed that they couldn't control. She lost close to a liter of blood before the LTAC facility said they will have to send her back to the main hospital because they did not have a gastro-intestinal doctor on staff at the time.

So after 5 days we were back where we started, but in the ICU unit this time. Previously we were in the CVICU unit. 3 hours after arrival at the ICU unit, my Mom started moving her arms and seeming like she was regaining some strength. I told the doctors that she's doing much better now. They were baffled by this. They said normally a patient doesn't get better by virtue of losing a liter of blood. I told them that she hasn't moved at all for several days and now she's doing better. They said that's not how it is supposed to work. That was another indication that the care at the LTAC facility was horribly lacking in quality. After 4 days back in the main hospital's ICU department, they had my Mom back to being fully responsive, communicative, and with her usual personality. I told the main hospital that I do not feel that the LTAC facility was in her best medical interest at all after our bad (but brief) experience there, but they would not listen to me. They insisted on transferring her back to the LTAC facility. I asked them if this decision is being directed by insurance or if it is being done solely for medical reasons. The social worker told me that it is exclusively for medical reasons. She told me that she is legally bound to tell me if it is an insurance payment based decision. She said it was not. So I was faced with the choice of going with what my instincts told me were right, or listening to what the doctors were telling me was in my Mom's best medical interest. I did not want to be seen as someone standing in the way of my Mom's best medical interest, so I gave in under protest. I told them that I do not agree with this at all, but I'll trust in their judgement and authorize it. That was the worst mistake of my life. I strongly urge anyone reading this case to not let a hospital roll over you, bully you, or manipulate you into betraying your gut instincts. They do this for their best financial interest, not the patient's best medical interest. They will lie straight to your face. I later read an extensive article in the New York Times about the relationship between large hospitals and LTAC facilities and how each comes out better financially with the arrangement they have.

We were sent back to the LTAC facilty. Three days later, my Mom had her right arm torn up pretty badly when a nurse there failed to properly move her from the bed to a chair. They had a device that lays flat like a bed but then can be repositioned into a chair. They would slide my Mom from the bed to the device lying flat, and then press the button that would move the device into the chair position. Getting the patient out of bed to sit in the chair is an important part of the recovery process, especially for patients on ventilators. When the nurse pressed the button to raise my Mom up from the flat position, she did it in such a way that my Mom's arm was pinned up against the railing. She flung forward way too fast and I had to jump in front of the device for fear that I was going to have to catch my Mom to keep her from falling to the ground. She had a scared look on her face like she was about to go over the big drop on a roller-coaster. She slid down and the railing tore her right arm. It was bleeding and I thought they may have broken it. I got extremely angry over this and demanded that my Mom be sent back to the main hospital. They did not allow her to be transfered back. The following day, my Mom went unresponsive again in their care. She stayed that way for many days. The main internal medicine doctor argued with me about calling it unresponsive, so I agreed to term it as minimally responsive. She would nod her head maybe an inch and move her eyes, but nothing else.

During our time at this LTAC facility, there was absolutely nothing special being done to determine why my Mom was unable to get off the ventilator. We were sold on this LTAC facility being a hospital that specializes in getting patients off the ventilator. I expected to see extensive testing being done to determine what the problem was with her lungs or elsewhere that was keeping her unable to get off the ventilator. Nothing of the sort was done. There was not one thing done differently at this facility that would lead you to believe they specialize in this. All they did was lower the vent settings and then raise them as needed. They did nothing else that wasn't already being done at the main hospital. I was told that the LTAC facility would have much more aggressive physical therapy to get my Mom moving again. That was not the case. They did nothing that wasn't already being done at the main hospital, just some range of motion exercises and getting her out to the chair. At the main hospital and at the beginning of our stay at the LTAC facility, I was told about how much better this place would be and how they'll get my Mom off the ventilator and back to home. But at the end of our stay at the LTAC facility, their social worker told me "Most of our patients never make it home." So we were blatantly lied to in the sales process of sending my Mom to this facility.

While at this facility, the main internal medicine doctor told me that he can completely sedate my Mom and get her off the ventilator that way. That is completely contrary to what all pulmonary doctors have told me throughout this process. Everyone else has said the patient must be alert and able to cooperate and participate to be able to get off the ventilator. Being naive at the time, I told the doctor that I am OK with him doing whatever he decides he needs to do to get her off the ventilator. So he proceeded to load her up with Xanax and Ativan to sedate her. That actually guaranteed that she would not get off the ventilator, not be something to help her as those medicines put her out and would suppress her drive to breathe.

I was told that my Mom has an infection called pseudomonas aeruginosa, but that she had it for awhile. This was my first time hearing this term and it has since been the worst aspect of her condition. I later found out that she had it going all the way back to January 14th after the initial surgery, though nobody at the time had told me of that.

Another terribly wrong aspect of her care at the LTAC facility was dehydration. Two of the specialists that were seeing her at this time said she was dehydrated. The main internal medicine doctor denied this. Her BUN level shot all the way up to 107 at one point and the kidney doctor said that she was two days away from needing dialysis. They finally added some free water to her tube feed. I watched the night they added this. Just like at the main hospital, within three hours of getting this water added, she started moving again. I concluded that is how the main hospital was able to get her going again despite the large volume of blood loss. They just did not dehydrate their patients. I believe the LTAC facility had my Mom either dehydrated or recovering from being dehydrated for a total of 34 days.

Yet another important detail of the relationship between the main hospital and the LTAC facility is that the pulmonary doctor that was initially assigned to my Mom's case is also the director of the LTAC facility. I find this to be an unacceptable conflict of interest to have a doctor treating patients and then steering them to his own facility. I do not think that should be allowed because it puts into play the possibility of a doctor treating a patient in such way that guarantees more patients for their facility. This pulmonary doctor did not do a single bronchoscopy or CT scan off her lungs that I'm aware of to try to figure out why she wasn't getting off the ventilator. These procedures became known to me as helpful diagnostic tools much later in the story. I put together an extensive list of questions for this pulmonary doctor about her treatment. I wanted to ask about further testing and possible procedures to help her get off the ventilator. I requested a family meeting with the staff asking for this pulmonary doctor to be present. He refused to have this meeting with me. Instead he took me to the hallway outside her room and told me "Your mother is never getting off the ventilator". I nearly fell down on getting this news delivered to me in this way. I immediately decided this place was not doing my Mom one bit of good. He would not even sit down and meet with me for any amount of time for me to ask all my questions. He did not do any advanced diagnostic procedures on her that I am aware of.

I then spent the next two weeks in a desperate attempt to get her out of that LTAC facility and either back to the main hospital, or to another main hospital in the city. The LTAC facility blocked *every* effort I made to get my Mom transferred out of there. I literally felt like we were prisoners there. They kept saying there was no medical reason to do so. This, despite the fact that my Mom was minimally responsive for most of this time period and they had made her condition considerably worse than it was both times she entered their facility. There was one day there where it looked like we might get a transfer approved and that was soon after they started giving her the free-water to stop dehydrating her. My Mom magically got better on that day leading one nurse practitioner to say "Hey, it's great that she got better here so we can get the credit instead of her getting better elsewhere". It seemed a little too coincidental to me. But then that transfer was again denied on the basis of there being "no medical need" in the opinion of the main internal medicine doctor there.

This facility did things that put my Mom's life in danger in my opinion. The night shift RT's would set the respiratory rate warning level on her ventilator at 50. Standard practice throughout her care prior to that point was that any respiratory rate above 30 is considered bad and anything over 40 is really bad and requires warnings. They changed her warning to 50 because she was breathing fast and they didn't want to be bothered with the warnings. I complained about that to both the lead internal medicine doctor and the pulmonary doctor. The internal medicine doctor said he would address it and make sure they keep it at 40. That did not happen. That same night after he said he'd address it, they did it again. I told them I am not leaving the facility as long as they do that. I started spending the night at the LTAC facility, sleeping in the chair, in an effort to protect my Mom from them. By leaving her warning at 50, it makes it to where my Mom can breathe at rates up to 49 for up to two hours between the RT's rounds without anyone doing anything about it. I told that to other RT's at other places we have been and they have all said they cannot defend that. When I spent the night, I would go out in the hallway and force an RT in to help my Mom every time I saw her respiratory rate went over 40.

This facility would also leave my Mom sitting in her own feces for up to two hours. They refused to even provide her with clean air boots to protect her heel wounds when it was apparent that the ones she had from the main hospital were filthy.

In spending the night at the LTAC facility, I was able to experience another issue of *extreme* neglect. It was a cold night in March and the heater in the facility broke. My Mom's room was being kept at 62 degrees at 5:00am. She had pneumonia at the time and was shivering in bed. I called the nurse in to ask if they can do anything about how cold it is. She brought in two blankets, one for me and one for her. After getting her blanket, I could see my Mom was still shivering. So I gave her my blanket and I wrapped myself in four isolation gowns, two put on forward, two put on backward to maximize the area covered. I was still very cold sitting in the chair. So I went out to ask the nurse again to do something about this. Instead of sympathizing, she proceeded to chastise me for being in the hallway with isolation gowns on. I said if you didn't keep the room at 62 degrees I wouldn't have to do this. I asked to speak to the charge nurse. The nurse paged the charge nurse. I had to wait 30 more minutes for the charge nurse to come to the room. I again asked if they are going to do anything about how cold it was in the room. She said the heat was out in the whole hospital and all the patients were complaining. I then asked again if they were going to do anything about it. She said they could not because the engineer's shift doesn't start until 8:00am. I then asked if she can't call him and say he has to come in now because it is an emergency and patients are suffering. She said no, she would not call him. That was it. That is the level of concern that place has for their patients. They flat out do not care and the staff is not to be inconvenienced at all. I experienced that level of staff apathy there many times, but this example perfectly illustrates how it was there. Because of this, I have described our time there as traumatizing to me. I do not use that word lightly and I do not regard it as an exaggeration. I felt like a prisoner and felt like I had to spend many nights at the facility to protect my Mom from their poor and uncaring care.

After the LTAC facility stopped dehydrating my Mom, things did get better there. It still wasn't the quality of care that I'd expect, but it was better than the previous 30+ days. On the last day there and the 3rd to last day there, these so-called ventilator weaning specialists had their best days in that they did get my Mom back to trying the trach collar trials. She lasted one hour each of those two days. That was the best they could do with my Mom in 45 or so days of care. Between dehydrating her and having her knocked out on Xanax and Ativan, my Mom never had a chance to recover there until things got better at the very end.

They decided they wanted to transfer her to a rehab center / nursing home. I was skeptical that my Mom's health status was good enough for that move. She had several major issues still going on with the infections. I tried my best to get her transferred back to the main hospital instead. I was on the phone with Medicare every day through this part of the process trying to find a way to get her back to the main hospital instead of to the rehab center / nursing home. I was told that I could call 911 myself and have her sent to the main hospital. But they also said that if my Mom isn't admitted at the hospital for a minimum of three days, then my Mom would lose her eligibility for the 100 days of insurance coverage for the rehab center / nursing home level. I could not get a guarantee from the main hospital that they would admit her for three days so I could not take that risk. So I ultimately authorized the LTAC facility to send my Mom to the rehab center, again against my better judgement, but because I was forced to. The LTAC center wanted to send my Mom to a rehab center that I looked up on the Medicare website and found that it was the worst rated nursing home in all of Orlando. I told them no way to that. I found another facility in St. Cloud she could go to that was rated four stars out of five. It was only a few more miles, so it was a no-brainer to go there for long-term care/recovery.

I filed a 16-page complaint letter with Medicare and AHCA about the quality of care received at this facility, but inexplicably to me they did not agree with my complaints.

So on April 12th, my Mom was sent to the rehab center. She experienced a downturn the first week there, but not too bad. Then the second week there, things seemed to be getting better. She was making some pretty good progress with physical therapy. This facility was considerably better than the LTAC facility. Their physical therapy really was more advanced. They were able to make some progress on the ventilator, but not much. Her best day there had her last 5-1/2 hours on the trach collar.

Everything there was going fairly OK until one night at the end of the second week there, my Mom started having major stomach pain. I noted that she was in a weird cycle where she would suddenly start breathing extremely fast (in the 60's and 70's on the respiratory rate) and she would start shaking with convulsions. That phase would last a minute or two. She her breathing would calm down and the shaking would stop. Her breathing would go back down to the 30's. Then her breathing would pick up and go back into the 40's. Then the breathing would calm down completely and go back into the 20's (where is should be) but then her eyes would roll into the back of her head. Then the pain phase and the convulsions would restart again. This cycle was repeating constantly. I called the RT in first. She said it wasn't respiratory. Then I called the nurse in. I asked if we can call 911. She said no because it wasn't an emergency. I said it looks like an emergency to me with her breathing so unstable and with her going into convulsions. She said that as long as her heart rate and oxygen level were OK, it wasn't an emergency. I then asked if she would call a doctor to come see my Mom because I did not trust what this nurse was saying. She said she will not call a doctor because it isn't an emergency. I then asked if I could call 911 myself because I want the hospital to see this. Another nurse on that shift told me that I could call 911, but if I did they could not guarantee that we could come back to their facility. That is a MAJOR threat as there are so few places that take ventilator patients and our other option was the worst rated nursing home in Orlando. So I had to sit there and watch my Mom suffering through the entire night forced to decide whether this short term situation was more important than the quality of her long term care. I decided to wait it out until a doctor came in. I went to get myself some breakfast and brought it to the room. While watching this I felt like vomiting. My Mom was left in this condition for over 14 hours before the doctor finally came in. Within 5 minutes of seeing her, he said she needs to be at the hospital. So he saw it, but the nurse didn't even think it was something worthy of calling the doctor. I want to call the police and file criminal neglect charges against this nurse, but have not done so because I fear retribution from the facility in the event we ever are forced to go back to that place. That is looking unlikely now, but I will still wait before calling to press charges. I found out through someone else I met while out there that the nurse that did this to my Mom was still employed there even after I reported what had happened to the higher level staff.

The rehab center then sent my Mom to a hospital located immediately behind them in St. Cloud. We were there for a few days and they made progress in improving my Mom's condition. They got her to last 5-1/2 hours on the trach collar on one of the days. On the day they planned to discharge her back to the rehab center, my Mom's blood pressure started dropping majorly. They went ahead with the discharge plans anyway despite my pointing out her instability. My Mom had a PICC line removed and I asked the hospital if they could put another one in before sending her back to the rehab center. They said they would, but then they decided to discharge her without it and said the rehab center could put something in.

When we got back to the rehab center, my Mom was completely unresponsive again. They sent me out of the room when putting in a new line. I thought they knew the line had to go in my Mom's left arm so as to keep the right arm free for blood pressure readings. My Mom's circulation issues have it that the only place where you can get a proper blood pressure reading on her is in the right arm. Well, they put what they called a mid-line in her right arm. When I came back in the room, I told them they have to remove it because now they will not be able to take the blood pressure on that arm and will not be able to get proper readings. They refused to listen to me and insisted that it stay in. My Mom stayed unresponsive through that night, but then started getting better the next day. But then in the evening, she had a major vomiting episode and then her oxygen level plummeted indicating desaturation, meaning that the vomit likely went back down into her lungs. The rehab center immediately sent her back to the hospital.

One other detail about our time at the rehab center was that my Mom did develop the infections again and they gave her an antibiotic called levoquin. I later asked the main hospital about that antibiotic and they said her infection was completely resistant to it and it would do no good at all. So the rehab center had no idea how to treat my Mom's infections.

While in this hospital now for the second time, they kept taking my Mom's blood pressure on the right leg and were getting artificially low readings. I was arguing with them for two days straight telling them that every blood pressure reading they have done since she's been here is garbage they should ignore and that they need to remove the mid-line from her right arm to take the blood pressure there. They would not listen to me. One morning at 6:00am, she started having a major episode with secretions causing her to cough and breathe fast. Her heart rate went up to 135 and higher. The respiratory therapist that was in the room said they would like to put my Mom on lasix to get fluid off her and lessen the amount of secretions she was having in her lungs, but they could not do so because of her low blood pressure. I was losing my mind with these people. I begged them to take the blood pressure on her right wrist just one time. They finally agreed. The blood pressure reading on her right leg was 80/53. Less than five minutes later, when taken on the right wrist, it read 205/110. I told them that is the accurate blood pressure. They immediately realized I was right and did what I told them to do. But the damage was done. A few days later, they said tests revealed that my Mom likely suffered another mild heart attack during this episode. Had they been treating her as a high blood pressure patient the whole time, this wouldn't have happened.

For the remainder of our time in this hospital, the main internal medicine doctor was ignoring every request I made for bringing in specialists for consultations. There was no wound care on care case the whole time. One day a wound care doctor came by, but an RT was working with my Mom at the time. The wound care doctor said she'll come back, but I never saw her again. Nobody identifying themselves as wound care was in the whole time after that. I asked the internal medicine doctor where is wound care, why are you not getting them on the case to tend to my Mom's wounds? He ignored me. The result was a pressure sore in her lower back that they said reached stage three and was eschar (dead tissue). This happened out of sheer neglect on the part of the internal medicine doctor. Her hearing also went bad while in this hospital. I asked the internal medicine doctor for a hearing consultation. He just told me her hearing was expendable and would not order the consultation. Then on May 7th, he told me my Mom would never get out of bed again and would never get off the ventilator. I thought to myself that with him in charge of her care, that will definitely be the case. She was back to being unresponsive at this point as well. I demanded that my Mom get transferred back to the main hospital where we started. I had to get her out of this hell-hole. Initially it didn't seem like they were going to allow the transfer, but in the end they did. We got very lucky because their infectious disease doctor was on vacation that week. So they had no infectious disease doctor there. I told them to tell the main hospital that the medical reason for the transfer is because my Mom has bad infections requiring an infectious disease doctor and the smaller hospital did not have one in that week. So they granted the transfer. When they told me that it would happen, I started to cry. The reason was because I had been fighting for over two months to get her back to the main hospital where I thought proper care was given. To finally get that wish granted was overwhelming to me.

I filed a complaint with AHCA about this facility and received a letter back saying "A representative from the Agency for Health Care Administration completed an unannounced visit at this hospital on June 22, 2012. While at the facility, our staff thoroughly reviewed your concerns. The representative observed care, interviewed resident(s)/patient(s) and staff, as well as completed medical chart reviews. The representative found that rules and laws were violated at the time of our visit. The facility received a statement of deficiencies and will be required to correct the deficiencies." This hospital wasn't as bad as the LTAC facility, but for whatever reason they found this complaint to be valid, but the other one not valid. I can't understand that at all.

So on May 9th, my Mom was transferred back to the main hospital. During the transport, she vomited so they were pumping her stomach clean when I was let into the ICU room. I told everyone there about the horrifying experiences we had to endure at these other facilities. I told the internal medicine doctor that the best these facilities could do with her on the ventilator is get her to two days of collar trials lasting 5-1/2 hours, one day at the previous hospital, and one day at the rehab center. I told him that the best the ventilator weaning specialists could do was 1 hour on the collar on two separate days. He said that these facilities could not do any better than that was deliberate or incompetence. I sided with deliberate. On the third day back at the main hospital, they had her on the trach collar for 13 hours. On the fifth day back at the main hospital, they had her totally off the ventilator. I told their staff "I know you are good, but you aren't THAT good" meaning that I put the primary reason for her getting off the ventilator so easily as meaning this could have happened two months ago had these other facilities not been deliberately hurting her with their bad and/or neglectful care.

This facility then tried to force my Mom to transfer again. I told them there is no way I will allow my Mom to be sent back to the facilities where we had been. I filed an appeal with Medicare to fight the discharge this time, having learned my lesson from the last time. The day they would have had my Mom out of here, my Mom became very unstable. They did a CT scan of her lungs. They found a blood clot was present on the lung. They put her on coumadin blood thinner and rescinded the discharge orders. There was a subsequent meeting about discharge where I fought for my Mom to remain here. I asked the doctors how it would have gone if she would have been at a rehab center and that blood clot episode would have happened, knowing she wouldn't have had access to a CT scanner to check for it. They said it would not have gone well. I said that I was right and they were wrong about what is in my Mom's best medical interest.

Then, after winning that fight, they determined that the pressure sore on my Mom's lower back had reached what they called an "unstagable level" and had to be surgically debrided. They performed that surgery and my Mom then had a large hole in her back where you could see through to the bone. This was the end result of the other hospital's negligence.

Two weeks after getting her off the ventilator, the internal medicine doctor ordered a fentanyl patch for my Mom's chronic back pain. This patch suppressed her breathing and put her into an apneaic breathing pattern. That forced them to have to put her back on the ventilator temporarily. She did get back off the ventilator again for another week after that. But then she ripped out her foley catheter which caused a bladder bleed that they could not control due to her being on the coumadin blood thinner. She then had to go back to ICU and had to have two more surgeries done. The first was a cystoscopy to stop the bladder bleed, then the second was to put in a filter to hopefully catch blood clots to prevent them from killing her in absence of blood thinner to stop them from forming. She has not been the same since this incident. Her mental status has been more spotty and she has not been able to get back off the ventilator. This incident and resulting surgeries took a lot of strength out of her.

I had a major battle to keep her at the main hospital and prepared a five page letter explaining my concerns about her being sent elsewhere. I said that until her underlying problems with the infections could be cleared, I do not feel comfortable with these other facilities being able to care for her. I told them about the rehab center trying to treat her infections with levoquin. I also brought up the thought of that open wound in her lower back getting stool in it when they leave her uncleaned for up to two hours. They agreed to let her remain in their care but wanted to move her to a smaller satellite hospital they run. I said that was OK so long as the same doctors would be caring for her. They said it would be the same doctors, nurses and techs. So I agreed to that transfer.

At the end of June, we were moved to the satellite hospital. Immediately upon getting there things went very bad. They said that my Mom had somehow gotten an infection called CDC. They said that usually only patients with AIDS ever get that infection. One of the infectious disease doctors said "I have no clue how your Mom got this infection". One of the resident doctors told me that things were very dire and to cherish every day I have left with my Mom because we don't know how many days she has left. I told this doctor that this infection has no idea what it is up against and it will leave her regretting it ever came. I was referring to my Mom's stubbornness being a superior force to this infection. The doctor thought I was crazy saying that. But my Mom did beat that infection. She still had the colonized pseudomonas and serratia, but she beat the CDC infection.

At the end of July, for reasons unknown, that same doctor doubled my Mom's pain medicine dose to a level. She did not tell me she did that. It was way too strong for my Mom and put her back into a very sedated state where she was barely responding at all. The doctors told me the problem was due to infection. I was writing notes all those days thinking that the infections were finally beating my Mom. Then after 2-3 weeks of this, I asked what her pain medicine dosage is. They told me 10mg. I immediately reacted saying "That's why she's so out of it, why are you giving her that much". I thought they had learned that they cannot give my Mom too much pain medicine or else they'll put her out of it and/or they'll suppress her breathing to make it impossible to get off the ventilator. I told them to lower the dosage back to 5mg, which they did, and then my Mom started communicating again after just a few days.

Then in August, they were having a lot of problems getting IV access on my Mom. Everywhere they'd try to put a line wasn't working for them. So they decided they needed to put in a more permanent access for IV fluids. They sent her back to the main hospital for a surgical procedure to put in a longer lasting line called a groshong. This was successfully placed, but then one week later, my Mom was complaining about something hurting her in the stomach. They sent her for an abdominal CT scan and while in the CT machine, the groshong was ripped out of her. I have NO IDEA how such a thing could possibly happen. I asked the nurse for a visual understanding of how it happened and he didn't tell me anything. I asked to speak to the tech that ran the procedure and they would not let me. I asked the nurse manager for an explanation and got none. Unreal. They then said they plan to replace the torn out groshong with another more permanent line called a hickman. The surgery to put in the hickman was scheduled. I stayed the night that night and at 7:00am, the nurse said they have ordered her to be sent for surgery in 15 minutes. That is all the notice we received and all the notice the nurse received. The surgery had to be cancelled for that reason because the nurse had not turned off her tube feed in advance of the surgery as required because not enough notice was given. Poor communication prevented that from being done. Then they didn't reschedule it right away and a few days later my Mom's blood pressure and heart rate started dropping while she was out sitting in the chair one afternoon. That led to another week of crisis where they were adjusting all her blood pressure medicines. Her blood pressure plummeted again and they decided she had to be sent to their CCU unit, another cardiac related ICU unit.

In that CCU unit, they started her on a medicine called norepinephrine to raise her blood pressure. They also gave her two units of blood because her hemoglobin level was low. I later had them show me her hemoglobin for the two weeks prior to then and it showed a strong correlation between her hemoglobin level going below 9 and her blood pressure having problems. They fixed everything with her blood pressure there, but instead of sending her back to the ICC floor at the main hospital to await getting the hickman line surgery rescheduled, they sent her back to the satellite hospital without having done what she went back to the main hospital for in the first place. That left me shaking my head because all totaled, it meant around one month was spent doing all of that and in the end she came back without the permanent line they wanted her to have in the first place.

Upon returning to the satellite hospital in mid-September, they decided to put in another PICC line. The failures to get in a PICC line or central lines was the reason for sending her back to the main hospital in the first place, but now they were going to try it again. Miraculously it worked this time. So I thought things would improve at this point. But then she developed a higher level of pain for reasons we couldn't determine. I asked the internal medicine doctor to increase her pain medicine dosage from 5mg to 7.5mg for that reason. He did and then soon after my Mom started becoming unresponsive again. This lasted for 2-3 more weeks and they again told me the whole time that it was the result of her infections flaring up again. I asked them again about the pain medicine dosage and was told that she gets one or two 7.5mg pills. I asked to clarify about the one or two. The nurse that told me this said that it is the nurses discretion to give one or two. That's how the doctor ordered it. I asked him how many times my Mom was given two at a time. He said multiple times on night shift. So they did the same mistake again, only this time they were giving her 15mg at a time when we had already determined that 10mg was too much. So that was 2-3 more wasted weeks with no chance of recovery because she was too sedated to get off the venitilator. I got them to lower the pain medicine dosage again and my Mom started becoming responsive again.

Then my Mom started having more thick secretions due to the infections and developed another pneumonia. They decided to do a 2nd thorocentesis procedure where they puncture the skin and drain fluid from the area just outside the lung. They did this successfully once before in the main hospital and it helped my Mom's breathing considerably. This time though, when they brought out the bottle of fluid, it was red instead of the white color it was the first time. I knew that meant trouble. What happened was the doctor punctured my Mom's lung this time. Her lung was collapsing so they had to put in a chest tube to stop the process of the formation of a pneumothorax. They put in the chest tube around 7pm one night, but then at 3am, the nurse said that there is still too much blood coming from the area. She called the doctor and they did not put the chest tube in correctly. The procedure had to be redone then. They got the chest tube in correctly and decided that in this condition they needed to send my Mom back to the main hospital yet again for closer observation. We were at the main hospital for one week when a nurse and tech were cleaning my Mom up one night. They accidently ripped out the chest tube while cleaning her. My reaction was "You have got to be kidding me". The number of mistakes like this that keep happening to my Mom is ridiculous. All through this hospitalization doctors have been writing my Mom off thinking she's getting fantastic care and just can't get better. The reality is mistakes like these kept happening to cut off any shot at improvement before it could get very far. They decided she no longer needed the chest tube and then sent her back to the satellite hospital soon after.

Back there I tried to get them to take a gradual approach to weaning her off the ventilator, figuring that she needed to build up strength gradually, rather than being forced into the deep end right away. For three days, this slower approach was followed, but then another doctor rotated onto the case and said to just put her on the trach collar for as long as she can last. I asked him not to do that because I said past experience these last few months says she would last for awhile, but then crash and then we'll back at the bottom of the mountain. He did it that way anyway. She lasted 28 hours and the doctor was happy with that, but then she crashed and they had to put her back on higher support and start over.

I then asked that if it is possible for her to get a swallow study done to try to get her back to eating solid food even if she isn't fully off the ventilator. Previously they told me she needs to be fully off. But I pointed out that she's capable of being off for over 16 hours a day. She just isn't capable of staying off. So I said 16 hours is plenty of time to be able to eat meals, so is it possible to just try it. I was thinking if she could get a better nutrition level that would increase her overall strength and possibly allow her to get the rest of the way off the ventilator again. So we went to an approach of keeping her off the ventilator 16 hours a day and back on the ventilator only at night for 8 hours. She passed her swallow study and started eating very small amounts of pureed food again. She did this approach all through the month of October and was improving every day. That was great to see her do that and it felt like things were going to get better. She was able to speak again because they had a speaking valve on her that was actually improving her breathing to where she might have been able to get totally off the ventilator. She was participating with occupational therapy. I recall one day where we were playing catch with a balloon and she caught it every time. She'd smile majorly every time she caught it because she was proud of herself. She was making good strides. But one morning where she had a heavy amount of secretions, she vomited again (nothing to do with eating the food) and they said she aspirated (meaning some got into her lungs). That led to another pneumonia and round of the infections flaring up, but this time the infectious disease doctor said that the infections have been resistant to everything except for an extremely toxic antibiotic called colistin.

Colistin was first administered in mid-November. She was sent to ICU because of another blood pressure drop. While in ICU, her creatinine level which measures kidney function started to rise. When it got to 1.4, I asked them to get a kidney doctor on the case and I requested a specific doctor. They refused to get the kidney doctor on the case. In the past at this main hospital, the threshold for getting a kidney doctor on the case was a creatinine level of 1.5 or higher. The following day her creatinine went up to 1.6 and I again requested a kidney doctor consult. They refused. The following day her creatinine went up to 1.9 and I again requested a kidney doctor consult. They refused. The following day her creatinine went up to 2.4 and I again requested a kidney doctor consult. They finally decided to get one then. Her creatinine level ultimately went up to 3.1 and she was put on dialysis. That was the first time she ever had to have dialysis and was extremely scary for me.

In ICU, they said she contracted another new infection called VRE. They told me she has 2 days to 2 weeks to live. I went out and paid for her funeral arrangements. They said that her kidneys had a very minimal chance of recovery. I asked them if I was right in saying she now has a 1% chance of getting back to having a 1% chance of recovery. They agreed with that assessment. Then they changed the antibiotic to another combination and those held the infections in check well enough for things to improve. Amazingly, she was able to get back out of ICU and was sent back to ICCU. She did 6-7 dialysis treatments and her kidneys fully recovered. Her creatinine level went back to its previous norms and her urine output went back to normal.

But I knew it was just a matter of time before the next round of infection would happen, so I started looking for alternative treatments for the pseudomonas infection. That is the one that has caused the majority of the problems for her. It is the one that has caused most of her setbacks whenever the infections were the culprits. It is colonized inside her, always present and ready to become a full-blown infection requiring antibiotic treatment at any time.

In my research, I found an alternative treatment called phage therapy. More details of this can be found on our Treatment page. It is a treatment that can potentially save her life as something that claims it can achieve full eradication of the infections she has. I asked the doctors about this in December. Initially they were very dismissive of it, but then they said they'd be willing to look at it if hospital administration approved. I then started pushing with greater force to get to try this treatment.

While discussions of this treatment were occurring, my Mom's condition was still very dire. She made it out of ICU and back to ICCU, but something was wrong through the whole month of December that was making it to where she wasn't able to tolerate her tube feed at a rate required for proper nutrition. She kept vomiting over and over every few days and so they had to frequently turn off her tube feed altogether and stick with IV fluids for nutrition. That was very bad. Also during this period, my Mom was nearly completely unresponsive. However there were two days (December 5th and December 16th) where she was awake, talking, smiling, and seeming much more her normal self. These days were soon after major vomiting episodes. So I know she is still in there even through all the infections and medicines being given. It took vomiting a lot of stuff out of her system for her mental function to improve. But then within 24 hours, she went back to being unresponsive. That leads me to believe it is medicine related in some way. For the entirety of the month of December, she rarely was getting more than half of her required nutrition level through the tube feed. They said that the motility of her stomach has been diminished.

After several vomiting episodes, I asked for a G/I doctor consult. I had to fight with the doctors for 4 days before they finally ordered the requested G/I doctor consult. The G/I doctor only came to see me one time. When he did, he seemed more interested in asking why I would not allow my Mom to be sent to back to the LTAC facility than he was interested in talking about what he was going to do to help my Mom. The following day my Mom vomited again. I asked them when the G/I doctor was going to be in. They told me that he signed off on the case. So he quit without doing anything to solve the problem. He did change some medicines around and added Reglan, but did no further testing to find out why this was happening.

At the end of December, she was forced to go back on the colistin due to another round of the infections flaring up. This time the colistin did not damage the kidneys immediately. Her creatinine level even went down during the first week back on this toxic antibiotic. I thought she might be developing a tolerance of her own to it. But then her blood pressure started dropping again and they were forced to send her back to ICU. They restarted her on dialysis pretty early in the game this.time.

Our January ICU period this year has been horrific. Initially, it seemed like it was going to be the same as the previous two times sent to CCU and ICU. They would have to give norepinephrine for a period to bring her blood pressure back up, they would do a few dialysis treatments and then she would be sent back to ICCU. That is how it started. She had a central line in her left shoulder are where the skin around it was starting to get very red. I brought it to their attention every day. I kept asking when they were going to take it out. I could tell it was getting infected. For 5 days, they kept saying it was just skin irritation. Towards then end the whole shoulder area was red and you could see areas of puss forming. It was clearly infected badly. I had been asking them about this line area for 2 weeks total. In the past they would always remove central lines at the 10-14 day mark because of the risk of infection. But this one was left in for over a month. And remember that they never did put in another groshong/hickman line like was previously planned. Had they not ripped out the groshong, my Mom would have had no need for this central line. That was the purpose of putting in the groshong, to have something more permanent. They finally decided to remove the central line and get a vascular surgeon to put in another line.

Note that during the November to January period, they consistently waited until things became a crisis before acting. They waited 3-4 days before getting a kidney doctor on her case as acute renal failure was happening. They waited 4 days to grant a G/I doctor consult when my Mom was vomiting and getting minimal nutrition. They waited 5+ days to remove the central line that was clearly infected.

They gave a dialysis treatment and my Mom's blood pressure plummeted that night. They had to increase the norepinephrine dose up to nearly the maximum level. This has cut off a lot of the circulation in her left leg, which was in poor vascular condition to start. This has resulted in her toes becoming necrotic and they will have to be amputated. They say she is not a candidate for vascular surgery to save the left leg. She may lose half her left leg before this is over. This is the point where I would throw in the towel and give up on her recovery if not for the potential of phage therapy to completely eradicate these infections she has. If she can get rid of the infections and recover, and the worst that happens is she loses some toes, that's something that can be lived with. So I am still striving to get this treatment for her. I strongly feel that her kidneys will recover if she can stop taking these toxic antibiotics. I also still feel she could get off the ventilator as she did before if these rounds of infection would be made to stop. So with those two things being doable in my opinion if this treatment were to succeed at eradicating her infections, there isn't yet enough happening to warrant me quitting. Only if she is unable to receive this treatment would I be inclined to quit where we are now. She is still responding to me minimally when I talk to her, so I am unwilling to authorize letting her die yet.

This has been an absolute hellish nightmare that has lasted for over a year now. I have been with her at these facilities for 15-24 hours a day literally every day since the first day, with the exception of six days when I was too sick myself with colds to risk coming in and contaminating her with more illness. There was a two month stretch in mid-March, April and early May where I literally lived at the facilities for 21-24 hours a day. I only slept in my own bed 10 times for about 3 hours each time during this stretch. I have been her voice and her advocate every day. I have corrected COUNTLESS mistakes being made at all facilities. I know that I have saved her life MANY times over by being here. There are so many mistakes being made it is terrifying to witness. I had one doctor at the main hospital tell me that I am the best patient advocate he has ever seen. I am just doing what I have to do to save my Mom's life. I will not let her die scared and alone. And now that this main hospital has refused her the last ditch effort treatment that could save her life, I feel that I have to go to the ends of the Earth to try to save her now. We simply have to find a way to fly her to the other side of the planet to get the treatment to save her. I realize that putting up this website is an extreme longshot for raising the funds necessary to do this. It may be an exercise in folly. But since there is a small chance that her story can go viral online, and when a story goes viral, millions of people learn about it, I have to take this chance to see if we can find enough people willing to help to get this done. At the end of the day, by doing this, I will be able to say I have done everything within my power to save my Mom. I don't want this to end with me having any "What If?" regrets.

If you've read this all the way through, thank you for hearing our story. The US Health care system is very much broken. This should not be happening this way. That a US citizen should have to seek to fly to Georgia or Poland for potentially life-saving treatment being denied here is an absolute travesty. I have daily pages of notes of documentation written throughout this ordeal that probably total over 3000 in number. All the mistakes, all the horrific and neglectful treatment, all the successes, all the little joys and extreme hardships have been noted. My plea is not an internet scam. This case history page is just a summary of what has happened. The US health care system has nearly completely failed my Mother. They have kept her alive though, so that is positive. I think a lot of that has come from her though. Her will to live is extraordinary. I have told her she is the toughest person in the world. I am proud of her for fighting so bravely for so long. I just wish all this effort would lead to a happy ending. Unfortunately that doesn't seem like it will happen. I am hopeful that the launch of this website will lead to a success that will give me a chance to write another chapter in her story. So please pass this website URL along to everyone you know. We need the help of everyone to make this happen.

The only alternative to this Air Ambulance trip across the globe would be for this story to get publicized enough that we find someone willing and able to help her get this treatment here or the hospital changes its mind due to significant public opinion demanding that they help my Mom. If this website launches and crickets chirp as there is no traffic coming here, then my Mom will probably be dead any day now.

UPDATE: On January 29, 2013, my beloved Mother has passed away. One hour before her death, I asked to speak to the internal medicine doctor at the main hospital in the waiting room. I asked him how is what they are putting her through better for her than receiving the experimental treatment. He proceeded to yell at me and berate me in a highly condescending manner. He said that the experimental treatment I seek is no better than a 3:00am infomercial. He yelled at me that my Mom is going to die and that she will be dying in that room. I then asked him about the possibility that the norepinephrine was causing falsely low blood pressure readings to be obtained, due to it cutting off the circulation to the arms and legs. I was then yelled at some more by this doctor. It was at a level where I actually had to say to the doctor that I would appreciate it if he would stop yelling at me. Immediately after that discussion completed, he said he was going into the room to put in a new central line. I asked him why the PICC line had to be removed because it was only in for a few days. He said it was infected. He told me to wait in the waiting room while he put in the central line. I did not object because I was so disoriented by his yelling at me as he did, but I also never gave written or even verbal consent for this procedure to take place. He went to the room and I waited in the waiting room.

After about 40 minutes he came back out and said that the central line was in. I went back to the room and then about 20-30 minutes later my Mom was pronounced dead. As they were indicating something was very wrong with her, I went into the room to hold her hand. She was already gone at that point as I felt no resistance whatsoever as I moved her arm. They proceeded to do chest compressions on my Mom in a futile effort to restart her heart and she was pronounced dead at 1:24pm after that effort failed. I strongly think that the doctor went into the procedure far too emotionally charged from his yelling at me and likely did something wrong. Part of me even thinks that he may have done something deliberately to end this right then and there. That is how angry he was at me in the waiting room.

One hour after my Mom's death, her nurse approached me and asked me to sign a consent form for the procedure that was done that ended my Mom's life. I told her that I wasn't signing anything and I thought it was highly tacky on their part to try to get me to sign something for their benefit while I was mourning my Mom's death. They realized they messed up badly by not getting this consent done and were trying to get me to help them after the fact.