November 28, 2020

Talked to the doctors on a phone conference at 3pm yesterday afternoon! Moms body is still not maintaining a normal body temperature, and they are still having to keep a body regulating temperature blanket on her. Mom now has a reinfection of the gastrointestinal bacteria in her blood again. Moms blood pressure is not staying up where it should be, and they have to keep giving her blood pressure medication, and they can not take anymore fluid from her body with the dialysis machine at this point, because of her blood pressure being so low, but the dialysis machine is still working to take the toxins from her blood, because moms kidneys are not functioning properly! The doctors also told me that moms bone marrow is now not producing enough white blood cells, or corpuscles to be able to fight the bacteria in her body anymore at this point. Mom is still not coherent, or awake enough to know if she is able to know what is going on around her. The doctors are telling us that mom is very sick, but that her lungs are doing good. The doctors are very worried about moms physical condition just like I am; meaning that moms body muscles are atrophying, and if her muscles keep atrophying she might not be able to recover her muscles back. Mom is not doing good at all right now, but she is a fighter! That is all I have right now for new information; until next Thursdays or Fridays phone conference with the doctors! I will keep everyone posted as I get new information, but if I do not post anything further it means that I do not have anything new, and that nothing has changed from the last posting I posted.

November 19, 2020

Mom is having another procedure done today to remove the dialysis connection in her neck, and put a different connection in her chest area. The reason they are relocating the connection for the dialysis machine is due to the original type of connection in her neck is only meant for a week or so, but the new connection that they will be doing in moms chest area is a more long term plug type connection and is placed below the skin in a vein as where the connection in moms neck is only a surface connection attached to a needle inserted into a vein in moms neck. Mom is at risk of infection with the original connection in her neck; so the doctors need to do the connection change to the more long term connection.

November 17, 2020

Got another phone call yesterday from the doctors, they needed my consent for another procedure to fix the feeding tube that goes into moms small intestine, because the tube came out of her small intestine! Mom is still doing the same other than that, and there is still no further signs of the bacteria that was in moms blood.

November 13, 2020

Now for the bad news! I woke up to the phone ringing this morning at 6am, and it was the doctors calling about mom! They told me that one of moms lungs collapsed, and that they needed my consent to do a procedure that involves a needle going into moms chest cavity to draw out the air in moms chest cavity around the collapsed lung so that they can re-inflate the lung. Hopefully mom will be ok, and the lung heals like the doctor said.

November 13, 2020

I talked to the doctors yesterday afternoon at 5pm, and they told me that mom is progressing as they hoped, and that moms blood tests have been coming up negative for any signs of bacteria. They did another MRI and that showed that moms brain has not shown anything more except for what it has shown in the past with the staff bacteria. The doctors did say that mom is starting to respond to commands like raise her arm, and squeeze their hand, but moms body temperature has been fluctuating from really low to really high. They think that it is due to her nutritional needs, and once mom is able to start taking in and processing the required nutrients that her body temperature will start self regulating again. The doctors also said that mom will be on the dialysis machine for awhile longer, and that the tracheotomy in her throat is not permanent, and will be gradually downsized to smaller tracheotomies as time goes on until they finally end up removing the trach and closing the hole in moms throat! Mom is on minimal oxygen support right now. The doctors said that it will be about another week before the medication that they were giving her will be out of moms system to the point of where she is not so out of it. The doctors said that mom has a very long road ahead of her.

November 10, 2020

Mom had to have the tube in her stomach that feeds mom replaced today, because the one she had became defective. Mom is still not responding to commands from the nurses like when they ask her to raise her arm she doesn’t. But they have seen her move her arms, and open her eyes, but they do not know at this point if it is just reflexes or her moving her arms by wanting to move them, and when mom opens her eyes they do not know right now if she realizes anyone is there! They are in hopes that it is due to her still being a little bit sedated, and that once mom is fully off of the sedation medication that it will pass.

November 9, 2020

Moms condition has not improved, or worsened so far. I am getting a little worried, because I am starting to think that mom will not be home for Christmas, and maybe not until after the first of the year!

November 7, 2020

I talked to moms nurse yesterday afternoon, and there has not been any change in moms health, but mom is critically stable is the term the nurse used!

November 3, 2020

Well mom is having another procedure done this afternoon! This is another procedure involving a needle into the stomach area to withdraw some more fluid, because they need to find out what else is making mom sicker! Mom has been running very low temperatures for the past few days, and it is not getting better! So the doctors decided to do another fluid withdrawal from moms stomach! Things just keep getting worse, and worse!!! Mom has been through enough, and these doctors need to get on top of everything that has been going wrong with mom!!!!

November 1, 2020

Well the past couple of days have been really nerve racking! The doctors have had to do a tracheotomy, and put mom on a dialysis machine. Mom now has two catheter size tubes, and a trach in her throat. One of the tubes is so that they can administer all of the medications through one IV connection due to moms body being so swelled up that they are not able to find moms veins anywhere except her neck. The second tube is for the dialysis machine to help mom get rid of the excess fluids in her body, and the toxins that her kidneys would normally take care of. Moms kidneys have been injured from being overworked so hard from everything that has been happening to her body with the constant bacteria infections, and the constant medical procedures that mom had to be put on dialysis for awhile according to the doctors. They are uncertain if the damage to moms kidneys will heal right now, and they are in hopes of the dialysis machine doing most of the work that the kidneys would normally do that it will allow moms kidneys to heal! Mom is going to be on the dialysis machine 24/7 for about a week or so, and then they will start only doing the dialysis for a few hours a day, and hopefully mom will not have to be on dialysis for to long!

October 31, 2020

The winner of the Two Piece Van Huesen Suit is Kevin Carney of So. Burlington, VT! The following link will take you to the video of the drawing www.facebook.com

October 28, 2020

I went down to Boston to visit with mom today, and when I got there her nurse was taking care of mom. Mom only opened her eyes for about 10 seconds, and then she fell back asleep for the two hours that I stayed with her. I don’t think that mom really knew that I was there, or even talking to her, because it was like she was just staring into space, and her eyes didn’t open that much! The doctor said that they started to ween mom off of the sedation medication today; so she should be more awake come Thursday or Friday. They have also put mom on the big gun anti biotics, because another blood test they did yesterday showed another bacteria in moms blood, and they do not know what one it is this time until a couple more days then they will know what it is! Mom does have a lot of water retention in her legs they have swelled up about five times the size they were from the last time I visited with her. The doctor also said that the MRI did not show any further signs of damage to moms brain, and there is no bleeding in her brain! That’s it for the updates that I have for now. I will keep keeping everyone updated as soon as I get anything new!

October 26, 2020

Well I was suppose to go down to visit with mom today, but the doctor called me really late last night at 11:45pm, to give me an update! Mom is stable at this point, but they are going to be running a bunch of tests today, one of which is going to be an MRI without the contrast that they would normally inject to get better color resolution, but with moms kidneys being overworked already they decided to do the MRI without contrast and the color levels will be a little blurry, but they think they will still be able to get a better picture of what is going on with moms brain! They are also going to be doing another echo cardiogram of the back of moms heart to check the heart valve on the back side of moms heart to see what is going on with that. Along with a few other tests. So I would not be able to see mom today due to all the tests she is having today! I am going to be going down tomorrow instead to visit with mom! Hopefully they have some good news for us tomorrow! They should have some hopefully by the time I get there!

October 24, 2020

Mom had a Bronchoscopy done late Thursday night to suck out most of the throat secretions that she is not able to cough up on her own due to her being so weak. On Friday morning I called the nurse who was taking care of mom, and she had tolled me that mom is doing better, and that she only had oxygen going through a tube that connects onto the nose area. She also said that mom is talking very softly again. But; here’s the thing, Tammy, Uncle Frank, Kim, and I had a phone conference yesterday afternoon with moms doctors, and all of the sudden mom had had a mini stroke sometime yesterday according to her neurologist. He said that the signs that mom had a stroke were so slight; that it was amazing that the nurse even noticed them, and mentioned it to the doctors. The slight signs of the stroke were moms left eye lid did not look right, and the left corner of moms lips were turned down slightly and did not look right as well to the nurse. So the neurologist went in to check it out, and he confirmed that mom had had a slight stroke. The doctors are in the process of figuring out what to do as of now, because of mom being so weak, and her kidneys being overworked so hard that they can not do an MRI right now, due to the contrast that they use which is injected into her body would do a lot more harm to moms kidneys, and put her in danger of kidney failure. But the doctors are now worried enough to do more in depth CAT scans of moms brain to see if they can find the source of the mini stroke. If they had only done the MRI that I had told them to do over two and a half weeks ago, the mini stroke might have been prevented! I will keep everyone posted when new information becomes available to me!!!

October 22, 2020

Well I am still waiting for the doctors to call! Still no new information since my last post. I am hoping the doctors still call me soon, so that they can give us an update!

October 18, 2020

The doctors have informed me that the new bacteria they found in moms blood is a form of gastrointestinal bacteria, but they do not know where it is originating from right now! At this point all they are doing is performing all sorts of tests, and guessing at where it could be coming from! Uncle Frank is down visiting mom this weekend, and has been there since yesterday.

October 16, 2020

Well I got a phone call from one of moms doctors, and mom has had another set back! They have moved her back into the intensive care unit, because she is running a low sub temperature, and they drew some more blood samples, and found another bacteria in her blood. They are cultivating the bacteria right now so that they can find out exactly what bacteria it is. The doctor does not think that it is the staff bacteria again though! They canceled the MRI until moms temperature gets better! I do not understand these doctors of today, they’ll do MRI’s on people that are in comma’s, but they are putting it off again for mom!!!! WHY???????? This hospital is suppose to be in the top 10 hospitals in the USA!

October 14, 2020

I want to thank everyone who has donated from their hearts so far!!! It really means a lot to mom, and her family!!!

Thank You Very Much!!!!!!!

October 14, 2020

I finally got to talk to Moms main doctor yesterday, and finally made some headway with getting things done that should have been getting done right along. Mom is getting an MRI done this week per my request; due to moms short term memory not retaining anything from one minute to the next! I should know the results of the MRI on this Friday. Also Dr. Sharma is going to be making the physical therapy team start working with mom to start getting her strength, and mobility back this week. Dr. Sharma is not worried about her cognitive skills, or her motor skills, but he is on the same page with me as to moms short term memory, and we both want to know what is causing it, either the medication that she is on or the staff bacteria that made it to her brain that showed up on the cat scan that they did a little while ago. I will keep everyone posted like I said as I get knew information k.

October 13, 2020

Well I went down to visit mom yesterday; we had a good visit, and mom is looking a lot better now. She is getting her skin color back from looking as pale as a ghost the last time I visited her! The one problem that really ticked me off is the doctor that said he would meet with me at 1:30pm in moms room was a no show, and I found out that he was not even at the hospital yesterday! The main thing that I wanted to ask him was about moms memory lapses that she has been having since she had a brain aneurism. Her short term memory is what I am concerned with! She does not remember something that was told to her, or what was done for her from one minute to the next! I am contacting moms case worker today, and I am going to tell her that I want to talk to that doctor today no ifs ands or buts at all! I want another brain scan done of moms brain to see what damage has or is being done if any! I am seriously thinking of bringing mom home once her wounds have healed! I am tired of this supposed top of the line hospital giving me the run around, and the doctors trying to pacify me, and now avoiding me!

October 11, 2020

I talked to mom this morning, and she is sounding better, but she still tires out quickly! I am getting upset with the doctors, and nurses down there. The doctors have not called me with any updates on mom, for the past three days, and the nurses do not make sure to put moms tablets next to her so that she can reach them, and this has been going on for the past week and a half! I am heading down to see mom tomorrow, and demand to talk to the doctors about mom, and to tell the nurses to either get another dinner stand in moms room so that she can have her tablets next to her in her reach, or they need to keep moms tablets on the one in her room already, and not move it out of moms reach! This hospital is really getting under my skin!

October 8, 2020

Well they are moving mom to a lower risk patient care floor today, and they are saying that mom is doing really good at this point. Mom is still pretty tired, but she is saying that she is not feeling any pain right now, and I think that has a lot to do with the meds that she is on right now. Things are starting to move in the right direction now!

October 6, 2020

Mom had another procedure to clean her wounds some more today, and the plastic surgeons finally closed moms open chest wound today with a skin graft, but the sore on her rear end is still open for now. I am awaiting to talk to the doctor hopefully no later than tomorrow afternoon. I talked to mom this afternoon, and she is still very weak, and can just barely talk in a whisper. But she said that she is feeling better, which is really good because since she has been back at Brigham And Women’s Hospital this is the first time that she is saying she is feeling better. Also just found out that everything she had with her is now missing when they transferred mom from Shapiro 6 East to Shapiro 9 West. The only things that arrived in moms new room are her cell phone and glasses. What is missing are her two tablets and power cords for (a 10″ Fire HD Tablet, and an 8″ kindle reader), her new tablet holder for her bed so that she did not have to try and hold her tablets in her hands, her new white nighty with red cardinals that I just got her on this past Sunday, her green jacket, and four other bags of her personal belongings! I am very irate right now, and if they do not find them by tomorrow morning I will be making a trip to Brigham and Women’s Hospital in Boston Massachusetts which is a four hour trip one way, and I will make them find them or they will be coughing up the money to replace them right then and there!

October 6, 2020

I want to Thank All of The People who have donated so far!!! It really means a lot to know that people are helping others in need!!!! Thank you very very much!!!!!!!!!!!!!!

October 6, 2020

Well Mom had another procedure yesterday afternoon, and they didn’t get her back to her new room until 7:30pm last night! I was not able to talk to the nurse until a little after 9pm, and she did not have much new information, as to how mom was; except that they closed the chest wound up with a skin graft, and that they did not close the wound on her lower backside just above her butt. I can not believe that the surgeons did not bother to call me this time to give me an update as to what they saw, and or exactly what they did. I had been calling the nurses station since around 2pm yesterday to find out about mom, and they said that the surgeons were just finishing up with mom. I am really getting sick of this so called highly rated hospital of Boston Massachusetts, and the way that they avoid me like the plague or something, because they know that I do not deal with bullshit, and that I demand things to be done, or I do not let them get away with telling me one thing, and not tell me about something else.

October 5, 2020

Visited with mom yesterday, and she is in a lot of pain right now, tired, and weak! She is still having trouble talking above a very soft whisper. Mom is having another procedure done today; to clean her wounds out some more, and to supposedly close her wounds up by taking skin from other areas to put over the open wounds. Will know more this afternoon, and let everyone know more.

October 4, 2020

I am heading down to Boston, MA to visit with mom today for a few hours. Going to be gone for about 12 hours today.

October 3, 2020

I forgot to make mention that mom has been off of quarantine for the past two days, and can now have one visitor for two hours per day.

October 2, 2020

Well we got some good news yesterday evening! The past two blood work tests on mom have showed negative to the presence of the staff bacteria infection in her blood!!! But they are going to still administer the antibiotics for awhile longer, because the staff bacteria have a tendency to hide, and they want to make sure the staff bacteria is not going to come back. They are also in the works of doing another MRI on moms brain to see if the staff bacteria are no longer present in her brain. One of moms’ heart valves is going to have to be replaced due to the damage the staff bacteria caused due to the bacteria that collected around it, but that is not going to be done in the near future. The doctors want mom to get better; before they do that kind of procedure! Mom will be having another precautionary procedure done on Monday to keep her wounds cleaned out, and her chest cavity clear of fluid build up. Then the plastic surgeons will go and graft skin grafts from her stomach area to cover her open wound at the top of her sternum area, and finally cover the open soar at the base of moms back to finally get her on the road to recovery, and healing.

September 30, 2020

Mom will be going in for another procedure tomorrow to have some more of the staff infection fluids taken out, and to have her open wounds cleaned some more from the staff infection. Mom will also be having a plastic surgeon team there as well to take a flap of skin from her stomach area to put over the open sore that is at the base of her spine to get that to finally heal and close up. They will also check to see if the surgeons that are taking care of the staff infection fluids in moms chest cavity through a hole at the top of moms sternum; to see if they are going to have to do anymore procedures to clean out moms chest cavity, and if they do not think that they are going to have to then the plastic surgeon team will take and put another flap of skin to place over the hole at the top of moms sternum so that they can finally get that to start to heal back again.

September 30, 2020

This is the partial description of what the meaning of Sundown Syndrome is – In general, sundown syndrome is characterized by the emergence or increment of neuropsychiatric symptoms such as agitation, confusion, anxiety, and aggressiveness in late afternoon, in the evening, or at night.

September 30, 2020

MRI results came back yesterday afternoon, and the staff infection is present in mom’s brain. The doctors are not to worried at this point, and are doing everything they can to fight the staff infection with antibiotics. They said that the staff infection reached her brain due to moms heart valve collecting the staff bacteria around the valve, and it traveled from there to her brain. As for the bone sample they took from the infected area of mom’s sternum; we are still awaiting the test results for that. Hopefully we will hear something about that by tomorrow the latest. Mom has been having what they call Sun Down Syndrome in which they say is pretty common in ICU patients. They are saying it is caused due to patients not knowing what time of day it is; because of no windows in the room they are in, and it usually occurs when the sun starts to go down. It is a confusion state that patients have happen.

September 29, 2020

The current information that we have right now is that Mom went through another procedure yesterday afternoon and had some infected tissue removed from the upper incision area of her sternum; they removed some of the surgical stainless steel wire where the infected tissue was, and they took some more fluid out of the internal chest cavity area. They also took a bone culture from the area of the sternum where the flesh was infected in the sternum to test it for staff infection in the bone, and if the bone in that area is infected with staff they will have to remove some of that bone area. The reason they might have to remove some of the bone in that area; is because they can not cure staff infections in bone, and if they leave the bone in it will cause the rest of the body to continuously get infected with staff. Mom did not want to talk to anyone yesterday afternoon, because of the procedure she just went through.

September 28, 2020

My Mother has been back at Brigham and Women’s Hospital in Boston, MA. for the past two weeks now battling a staff infection that has now caused one of her heart valves to collect the staff bacteria around it and will need to be replaced, but the doctors do not want to do the procedure right now. They want to wait to do it in 2 to 4 weeks, because of the fragile condition that she is in right now. The doctors are trying to battle the staff infection with antibiotics, and have gotten my mothers condition to stabilize as of today.