September 19

WOW ok it has been a long time and I am sorry. About my mom. they are weining her off the vent and she was doing really good for awhile until she got a mucus plug and had to be put back on the Vent. The dr came in 2 days ago, and did a Bronostapy on here cleaning out of her lungs and making sure that she was all clean. I am not sure how much longer she will be in Select, but we hope that she will be in there long enough to get compleatly off the vent. I know this isn't much but I will update this more later

xoxox Jenni

August 15

I am sorry we haven't updated in awhile. Things have been kinda crazy. Mom was transfered to the cleveland Clinic for a second oppinion. They did a never contduction test on her yesterday. They didn't get to finish it but they got enough info to find out that she has more damage then they had thought so that means it could take alot longer to heal then they orignally thought it would be. So they now thinking about sending her back to either Select or accross the street to the Arburs of canton.. a place that speicalizes in people on ventalators. But we are hoping she goes back to Select right now. depending on what they need to be done. If they have no more medical procidures that require her being in the hospital then. I will write more later again I am so sorry I haven;t updated.

xoxox Jenni

July 26

July 26

This has not been a good week for Mom she is feeling very hopeless and helpless. The doctor did the nerve conduction study on her July 25. Well, the outcome was not what we were looking for........ She has something called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). It is a chronic type of GBS. The doctor told her she wasn't getting in better so they started her on steriods to see if that will help. If this doesn't work than immunosuppressive Drugs. This disease is even more rare than GBS. Its onset can be slow and subtle. It can go in remission and can also relapse. Please keep praying for my mom and family!!
Love, Jodi

July 22

OK here's what we have so far.. The dr came in yesterday and told her that he only see's improvement in her face.. which might be the only physicaly improvements but I can tell you she is breathing better and she is moving her chest muscles better. She has her last eletrophesis tomorrow and then a nerve condution test to see where her nerves are. She has been having alot of burning in her legs and nothing we do seems to want to help but we try anyway. She also complains that the strap that holds hers trache on is very ichy and thats another thing we can't seem to fix... so its all baby steps. I will post more later


Love Jenni

July 16

July 16, 2008 was a very busy day with the doctors.

Well, we spoke with Dr. Rosenburg( neurologist) yesterday and they are going to do another round of the electrophoresis on mom tomorrow. They will have to put the catheter back in to do the procedure. Than Dr. Asfoura (nephrologist) came in to talk with us about the electrophoresis. He has to do it because of it being like dialysis. He said it is like when you take the blood out and separate it from the plasma, then you throw the old plasma away and you add new plasma with salt water and you put it back in the body. This procedure helps get rid of the " bad protein and antibodies" that are causing the destruction of the mylein sheath. Finally, we met with Dr. Harris (lung doctor) he said that mom was breathing a lot better 0n the vent. They had changed her setting and it has been the lowest vent setting since she has been there. So, that is a good improvement will update you more later.

Love, Jodi

July 15

There really isn't much to tell. Nothing reallty has changed with mom. except she is getting more and more charely horses in her legs and that is a good sign, atleast we heard it was anyway. We have had some trouble a few nurses and aids but for the most part everyone seems to be doing ok and treating my mom well. I just had one nurse banded from taking care her from the way she treated my mom. She breaths alot better on her own and they say she is getting stronger and better caughing and stuff so we will just how things go now.

July 12

Not much of a change, the dr did say that her face looked better and that was a good sign but the 2 treatments that they had done for her, the results didn;t come back as they had hoped. So I am not sure what the next step will be and maybe nothing just that we have to sit and wait for her to get better on her own and not the treatments that the dr's have givin her. Thats all the update I have for now. if you have any questions just e-mail me


Love Jenni