Discharge Meeting

*Yesterday the family showed up at the hospital to have a meeting with the discharge people on a plan of action to bring me home. The family is in hopes that bringing me home will wake me up and get me moving again. Tammy, Cheri, Jaye, and mom were there. It seemed to go ok. There are a few things that need to be done before they can come to the house and say that I can come home. Jaye and Cheri need to get trained on helping take care of me in case it is needed. Let's all keep our fingers crossed.

Home

*The doctor currently has said I can go home. I am waiting for the "Judge" to approve the paperwork that got sent to her. Brad Stramm came and picked up the paperwork to begin with. We don't know why. No one hired this man, he just showed up one day. These lawyers are just looking for money. I want to go home. Every time someone mentions going home, I just light up.
*My family is getting things ready so I can come home. The house is going well.
*My older brother's friend Rodney has been coming and doing reflexology on me. It has really helped out. My right arm which wouldn't budge at all, was straightened out in ONE session!! Why don't more medical center embrace this kind of healing?
*The doctors did a scan on my right lung. They don't know if it is an infection or scarring tissue from the chest tubes. Do these people know anything?

Medicare

*The hospital wants my guardians to sign papers over to them so I get moved from floor 10 to floor 5 of the hospital. If they didn't the hospital threatened that they would sign me out of the hospital AMA (against medical advice). Floor 5 of the hospital is disgusting. There is no way I am getting moved to floor 5. Apparently this all has to do with bills from the hospital and Medicare won't pay because the HOSPITAL keeps messing paperwork up. Makes you wonder. Plus, my doctor does not want me on floor 5, so this is all a very weird scenario I must say.

PIC Line and Trach

*They took the PIC line out of me over the weekend. They are also supposed to be plugging my trach and taking it out. Apparently I am doing better than they expected.
I am not giving up without a fight. Two years in the making.

Update

*Today my family found out that I have a "ventilator trach." I cannot breathe out of my mouth or nose because of this. My family was not informed that the hospital put this in me till today. It has been in for a few weeks now. I was fine on the other trach. This was supposed to be a big secret that the hospital had. Today we found out though.

Update

*They changed my team of doctors so now I am awake. I am sitting in my chair. I am a little spacey at the moment, but part of that has to do with the medication till it gets settled and my body gets used to it again.
*My family and I celebrated my 25th birthday on May 5. Everyone brought balloons. My sister Tammy brought one that sings!
*My family talked with the patient advocate about how they feel my care should be. We are hoping this did some good.
*My mother has been staying with me pretty much 24/7.

Wedding...

*The girl that did this to me, Abby Rice, got married on Sunday. Her new name is Abby Renaldo, or will be. So much for love......
*I am still sleeping till the hospital regulates my seizure medication. The initial medication needed to stop my seizures was a lot to get my body to relax and calm down. So, now the hospital has to bring it back down and find a happy medium.

Funeral Home

*Well apparently, my family has to make funeral arrangements for me at a funeral home in order for me to get financial aid from Medicare. They went and did this last night. Very tough on my older brother and older sister Cheri. This was not something they wanted to do, but it had to be done.
*My seizures have subsided. Just waiting to regulate the medication to keep my weight up and continue on the family's plan to get better. Any kind of better than it is now....

Update

*My seizures have subsided, with minor ones till the hospital regulates my seizure medication. This would not have happened if they were monitoring my levels. Nothing I can do now however. Just will take some time (...always takes time....) till I get back to my old self.

*On another note, this story came up: Story
I want all of you to go to this site to rate your hospitals. The link is in the article. Thank you very much!

Seizures

*Yesterday morning I started to have seizures again. This apparently started because of several factors:
1) With the increased intake of food, and having diarrhea, my anti-seizure medicine was not being absorbed
2)The clinicians were not monitoring my level of anti-seizure medicine to ensure that it was still there and working. The neurologist said they should be checking this weekly to make sure that it is still effective in nature and things like this do not happen.
*I have gained 15 pounds as a result of them upping my intake of food. I was emaciated due to the clinicians not feeding me according to weight and height. I look better despite my seizures I experienced.

***More to come as this unfolds***

Catheter

*Today my catheter backed up. The hospital has not changed my catheter in a long time. As a result I was peeing blood. Urology does not want the catheter to come out, but the rest of the staff has not done the rest of their part by trying to make sure that this does not happen. This has happened before because they refuse to change the catheter on a regular basis. Luckily my mother was there to catch this. When can the neglect finally stop?
*My sister Cheri and my brother Kenny have a meeting with Leigh Anderson tomorrow to go over the financial papers so they have control over my finances. This may help me get out of ECMC and speed up the process. Let's hope.
*My mother got a hold of Kaleida and they are looking into taking me. I cannot leave a hospital setting yet, but this might be a better place than ECMC. ECMC keeps lying to other facilities about my level of care so that these facilities do not want to take me as a patient. We don't know exactly why they are doing this. Possibly a liability issue and risk in letting me go.

Family Meeting-March 13, 2008 with doctors from ECMC

*The family met with the doctors and discussed many of my needs and what the family plans on trying to help me with to get me to improve. Among the things that were discussed:
-My weight is below (well below) what it should be for a 6'2'' man. Currently I weigh approximately 117 pounds. I came into the hospital weighing in at about 160. My sister Tammy came with information about proper weight, calorie intake and fluid flushes and what they should be. The doctors said this will be addressed and hopefully I will get the food I need to gain weight back on me which in turn will help me gain strength to keep fighting.
-Respiratory therapy came and did tests on me. They showed the family as well as myself some exercises to do to try to gain back some lung capacity. There have been plenty of lung infections as I have one now.
-Respiratory therapy wrote orders to downsize my trach and plug it for a trial period to watch my O2 levels. (Since this meeting, they have done so and I am doing better with the trach being plugged than when it wasn't. My O2 levels have gone up and you can hear me trying to talk)
-Speech, Occupational, Physical, and range of motion therapy are to come in to assess what level of care I can receive to gain muscle mass and mobility back.
-Urology is to be in to do tests to see if I can go to the bathroom on my own instead of having a catheter. The catheter just causes urinary track infections anyway because they never change it.
-I am to be taken out of bed 2-3 times a day. I cannot leave the floor however, but getting out of bed is good.
-The nurse practitioner that has been a problem has been removed from my case because she has been a problem to the family since she has been on the case.
-There is going to be another meeting in a month or so to continue discussing my care and where to go from here.

*Hopefully this will help, but it can't undo what this hospital had done to myself and my family. From past experience however, the hospital tends to say one thing to appease the family and not follow through with what they say. The only time that things are done when they say they are going to do them is when it costs me money, such as surgery, and they are on the receiving end of the funds.

New Post

Sorry about not updating. I (Jaye) have been working and doing school so I will get the latest update up as soon as possible. Thank you everyone for their patience.

Meeting with doctors cont.

*The doctors rescheduled the meeting with the family at 10am Thursday March 8, 2008 to discuss my health.
*My mother heard me say "My stomach hurts" the other day. Very loud and clear. Hopefully this meeting with the doctors will help my progress along and get me out of ECMC.

Meetings with doctors

*There was supposed to be a meeting (March 5th) with the doctors to tell the family where I stand as far as my health and where to go from here. Also, to make a plan to try to get me out of ECMC. Apparently my case isn't important enough because the doctor called and said that they couldn't make it to the meeting. Soon this happen hopefully. ECMC has treated our family as well as me like crap.

Random Things

*My sister and brother went to class for the guardianship thing. It wasn't as bad as Joan Warren had made it out to my uncle.
*I have been getting very angry with a lot of people lately. No one quite knows why.
*The hospital yelled at my mom and took my wheelchair away. Why? Because they thought my mother was feeding me. Come to find out, they found applesauce and a spoon in my bed. It was from one of the other staff members trying to do a swallow test on me. My brother, my guardian, told them if they have a problem with my mother to not take it out on me. This is very true because this is what they have been doing all along. They get mad at my mother and abuse me as a result. How can this be ethical?

Waiting Period

*My sister and my brother have to go for "guardianship classes" on the 7th. We are waiting for this to happen so guardianship gets turned over for the temporary period.
*In the meantime, getting a hold of the "old" guardian to get a hold of paperwork for my bills and financial situation has been hell. Just as before, she will not return phone calls so we may have to try to get a hold of someone who will make her do this. Is she this incompetent? Suspicions arise that she may do so to say that the family is not capable of handling guardianship. We shall see.
*I was very mad at my mother the other day. Being able to not communicate very well, I was able to show it very well regardless. The family couldn't figure out why I was mad however. I was trying to talk and was moving up a storm however. This is a good sign. Shows I will fight and keep fighting to get better so says the doctors.

Court

*Court was yesterday. The court finally turned over guardianship of me to my sister Cheri and my brother Kenny. This is a temporary thing for 90 days to see if it works out. There is a lot to be done and a lot to go over as far as my care goes. Paperwork as well. Hopefully my family can do this. Court was not easy though. Everyone keep me in your prayers because the ride has just begun.

Lawyers call

*The lawyer called my mother today to tell her that the court evaluator decided to have Cheri as guardian. This is good for me, but my mother doesn't think so because she wants control over the situation. My mother is worried about Cheri's husband, Dan, because my mother feels that in the past Dan has shaped and influenced too much of Cheri's decisions. This may be true, but we don't know for sure. Either way, Cheri is there and cares about me and that is what is important. Well hopefully the family can work this out. If Cheri didn't show up, the case would still be going on. Of course the judge still has to rule on this tomorrow. My mother can bitch all she wants but at least I have a guardian in the family if the judge rules with the court evaluator and not Leigh Anderson. My mother and my sister will have to learn to work with each other and talk and listen. This may be the hand of god stepping in to say now is the time to clear things up. Who knows. Everything happens for a reason.
*On another note, I have water on my knee for some reason. My knee was about the size of a grapefruit till they had someone come down and drain it. My mother asked about if they were going to do anything for it. The nurse she asked just said, "I guess we will have to amputate his knee." ~as a side note, I, Jaye, wonder if they said that with Fuzzy there. I can't imagine what would be going through Fuzzy's head if they said that right in the room!!~ Some of the nurses and staff at ECMC are very insensitive.

Court on Thursday

*Thursday my family went to court again for guardianship over me. The lawyer talked to all of them and then the court evaluator talked to each of the family members, one by one. First Tammy went, then Kenny, Cheri then Jaye. The evaluators each had a set of questions they wanted to ask each of them. "Your father has alzheimers?" "What if you and your mother did not agree on the care for your brother, what would you do?" "Have you ever been arrested?" "Would you have a problem moving out if your mother told you you had to?" These questions were nerve wracking, but they all got through them.
*The family has to go back on the 16th to get a final judge's ruling on who should be the guardian over me and my care/assets etc.

*Today is my sister Jaye's birthday. She is going to come see me so I can sing Happy Birthday to her.