Well it has been almost a month since I have updated and wow what a month it has been. Mom has been off the vent for a week now. She is on a TP tube they call it and has done well with that. It was very hard for her at first but now she does not struggle with it at all. They have not had to turn on the vent for a week. What a great thing. She is able to speak with a speaking valve on. This also was very hard for her at first. She was only able to use it for a few minutes at a time at first now she can go for hours. It was great to hear her voice again. It had been over 3 months since I was able to hear her and what a treat. The other day my dad called me from my moms room and put the phone up to her ear and she talked to me on the phone (Wonderful). We dont relize how lucky we are to just talk to the people we love until we are not able to a period of time. My parents had a anniversary party on the 20th of Sept. and we had a great show. My mom was not able to stay for along time but we got her all dolled up hair and makeup and she looked great. I said to my aunt that our goal then was to just get mom off the vent so we can talk to her again. My aunt was shocked we would want her to talk to her over her being able to walk and move. I said to my aunt there is nothing more important than being able to communicate with the ones we love if she never walks again I can deal with that if I have to push her around in a wheelchair at the mall I can do that but to not hear her voice is very hard. Sometimes I will call my parents house when I knew my dad was at the hospital because it is her voice on the answering machine and I just had to hear it. So we are so happy she is speaking again. It gives her a great feeling of freedom. Her right hand and arms are moving more not a lot but some and her left arm a little movement in her hands and fingers. She was able to go outside last week a couple of times and it was great to see her enjoying the outside. (We take so much for granted being well and strong) Anyway, I just wanted to give an update we are still hoping that she will be home for Thanksgiving but our original goal was Christmas what a treat that would be to have her home for Christmas. Hope all is going well with everyone.

Dawna

Well, guess who I just got off the phone with. Yep, it was mom. The respitory therapist deflated the balloon in the trach for 15 minutes. This allows mom to force air across her vocal cords to create her voice. She sounds terrific. She says she feels pretty good and that she wants to see me. I will be going up to see her in a day or two. Friday was the first day I was able to hear her voice in almost 14 weeks and beleive me I cried like a baby. Not much more to report at this time. Just thought I would let you all know she is now talking.

LrF

Well mom is currently in her new place. It is Hanover Hall in Hanover Pa. It is about 85 miles from our house which makes it about the same distance I was traveling for the previous place. Of course the move was rough on mom and this whole thing is taking its toll mentally on her. All movement in her arms and legs is gone and the weening of the vent was unsuccessful. It is almost like she is giving up. Mom is now saying she cant take much more of this. We dont know what the means but dad refuses to hear talk about that statement. Dad told her he wasnt talking about that with her and she says, well we have to talk about it sometime. Mom has always said she doesnt want to be on life support. I hope this is not headed where I think it is. She has fought so hard and I am not sure how much more fight she has. I am taking off work to go and see her tomorrow. Maybe seeing the baby of the family (me) will put some fight back in her.

OK, Mom is having some good days this week. I would say it is an over all positive week. Unfortunately I have only made it up to see her once this week, with all the football games I have to attend. 2 games a week for my son and 1 game a week for my daughter. Anyway, back to mom. Mom is now allowed to drink water and have some food (jello, pudding). They did a test and now know she has enough control to keep the food from going into her lungs. They have been sitting her up in a chair to feed her. Mom is still on the respirator but they are concentrating on weening her off. Weening sessions go like this. They turn off the initiation of the breaths. This means Mom has to initiate all the breaths she is taking. The respirator does assist in the amount of air she takes in. Right now she can go for about 40 to 60 minutes before she is too tired to continue. The respitory therapist explains it like this. If you are a jogger and you quit jogging when you start back you dont have your wind. This is the same with mom. She is struggling to get her wind because the respitory muscles are out of shape due to lack of use. Now the negatives. Mom has a bit of a kidney infection right now and she also has some infection in her blood. Her lungs have a bit of fluid in them but not pneumonia. Her bed soar is getting better and they have it connected to a vacuum machine that constantly sucks the bad stuff out. Mentally we dont exactly know how she is holding up. Twice this week she didnt know who Dad and I were, but this could be from the pain medication and the vision issue she is experiencing. But seems to figure it out once we are there for awhile. Right now they say they are looking to move mom to a long term care facility (Nursing home/rehab center). None of us are happy about this but if it helps her get off the respirator then we must do it. Right now they are looking at Fredrick Md which would be a blessing. If not Fredrick then possibly York Pa or Pittsburgh. We have filed for an extension to keep her at Camp Hill but Medicare sucks and I dont expect anything from them. One thing for sure this Lady is a fighter, she is tough and there is no quit in her. What a woman.

Lenny

Well we knew bad days were to come and they are here. Dont be alarmed as they are not terrible days. Just not as good, or fun as last week, and they are bad. Mom is having some fluid build up in both her lungs. This is bad, but it is not alot of fluid at this time. We do not want this to turn into pneumonia, so we are taking steps to prevent that. Currently mom has a blood clot in her left leg. We have had a procedure done where they put a filter in path of where the clot would travel if it were to break lose. The filter should block the clot from traveling to her lungs and causing major issues if not death. We have started mom on blood thinners, which is causing her lungs to secrete blood. This is terrible to see but not a major issue and is more discomforting to mom than anything. (I am sure that is just easy for me to say). The worst thing we have heard or seen in the past week is the respitory doctor’s prognosis for mom. This is bad. The Doctor who I thought was an ******* turns out to be O.K. (still an ******* but an ok *******) If that makes any sense. This doctor says he doesn’t see mom getting of the respirator within a year or even 2 years. He has his reasons for this prognosis and a lot of it, I have listed above. The positives for this week are few but they go like this. Mom has been comfortable and not in pain this week and that is a big thing. We had a procedure done on Mom’s bed sore where they remove all the dead flesh. The bed sore is getting better and healing now. The most important thing of all is her fight. She is fighting and hanging in there. Dr. ******* even says he can’t believe the fight in this woman. I said that aint no woman. That is my Mom. Keep us in your hopes and prayers. Dad and I are running on empty but we are hanging in there with her, and at this point I dont think complaining of being tired would be appropriate.

Lenny

Well, There is a little new status on mom. We had a meeting on Thursday with an organization that specializes in severe cases. The group is called “Specialty Select Services”. This group leases an entire floor of a hospital and takes patients who are having major recovery issues. This group states that they have an 88 percent success rate on weening patients off ventilators. (I have no way of checking out this claim). The meeting went as planned. The Rep for this company came down and literally did a sales pitch. I hammered her with questions and she seemed to have all the right answers. Dad and I decided this was the best chance for mom to recover. The next day mom was transported via ambulance to Camp Hill Pennsylvania. She is on the 5th floor of Holy Spirit hospital which is leased by “Specialty Select Services”. Dad and I went to see her that day and Dad has been there everyday so far. Currently we are both extremely unimpressed. I hope things change but I can tell you this. I am not happy and the last three days have been harder on us than the first 8 weeks, and especially hard on Mom. Keep mom in your prayers as she is really uneasy about this move and things just dont seem right. I hope I am wrong about this place and we are keeping a very close eye on this situation. I have made alot of decisions since this whole thing has started. I can tell you this. I have made some decisions this week that no one should ever have to make. Mom is fighting and is the strongest person I have ever been around. This lady unbeleivable, and I am as proud of her as I can ever remember being.