Very Sick Mom

Thank you all for your words of encouragment I really appreciate it. I find such comfort in knowing that others have been threw this very hard circumstance and gotten threw it. My mom has gotten treatment. She has received 2 different treatments of the IV 5 doses each time and she received one treatment of the blood therapy. I think it was four or five days I am not sure. She did improve for a short while after the blood therapy and was able to move her right hand a little but now she is unable to move her fingers or hands at all and all she feels is pain. She is getting the medicine for nerve pain and a lot of other pain meds. Her spirits were a little better yesterday afternoon. She just has so much anxiety and fear of being forgotten by nurses or resp. therapist and staff in general. We try to have a family member with her during the days. I asked her today if she wanted to see the kids for her B-day tomorrow and she said if she is having a good day in regards to her pain level. She does not want them to get upset because so many times when people who have not seen her do come to see her they get so emotional for the first time. I dont know if anyone is ever prepared to see someone they love in this state of condition. My hat goes off to you who have been able to see yourself and others thew this terribly frightening ordeal. I know in my heart she will recover to what degree I am not sure but we as a family continue to pray and appreicate all your prayers also. Thank you so much again!!

Dawna

Well today was mom’s b-day (66) and wow what it a day it was. The floor did let my mom have the grandkids in to see her. That was very emotional for me. She has not seen my kids since the 4th of July and she is use to seeing them at least twice a week. She use to watch my 4yr. old on the two days a week I worked so she is very use to having him around. I know she misses them all very much. The nurse she had today was terrific in fact I got her a card to give her tomorrow to say thank you. She made my mom a special cake and approved my youngest the 4 yr. old to come in and see her. She was convinced it would help my moms spirits. It was hard for my oldest (17 boy) to see his grandma so sick. she is a very important lady in his life. She has always been there for me and my kids. I am the only daughter and the bond between a daughter and mother and the daughters kids is a tight one. My 12 year old girl who is also very close with her grandma (she is my only daughter and is very spoiled by grandma) was stronger than I expected. She was teary eyed but handled it very well. My 11 year old boy was a trooper and my 4 year old boy was as cute as ever. He just wanted to make sure grandma was ok. He misses her very much (we would shop with my mom every friday and have lunch together and she watched him two days a week. Anyway I had the hardest time out of everyone it was so hard to watch her try to be brave for them and smile when she was hurting and put on a happy face but, she did love to see them and my dad was so happy to see her reaction when they walked in the room. He said she just beamed when they walked in and was very happy. We are hoping it will give her the encouragement she needs to continue to be motivated and work at getting well and not be so discouraged. Thanks again for all your thoughts and prayers they are appreciated greatly.

Thank You,
Dawna

Mom was moved yesterday to a specialty hospital. I was a little nervous at first. We had been at the big hospital for almost 2 months and change is hard. The new hospital is much smaller but has a floor of 6 rooms that are considered Intensive care needs. She is still on the vent (her numbers look better and her lungs are getting stronger.) They had here on TP’s today for about 5 min. That is all she was able to do. So she was breathing on her own for about 5 min. today. The good and bad thing about this hospital is that it is much more focused on rehab and therapy which is a good thing in that she needs that very much to get better but it is also so hard to watch her go threw all that she does it hurts so much to just move. She was on the tilt table today for the first time and she was able to tolerate it for 15 min. Which I think is great considering it was her first time. They will push her much more here at this facility than at the other hospital. I know she needs to go threw all this rehab to get back to be even close to what she was capable of before GBS struck her. She seems to be in better spirits and seems to be a little more herself when talking with us. She is much less swollen and seems to be just overall looking better. It will be two months on the 8th since her first symptoms and we have come a long way and we have a long way to go. I hope and pray the progress continues and that we will start to see more good days than bad.

Wanted to update everyone and say thanks again for your thoughts and prayers.

Thanks,
Dawna

Well yesterday was the first day I had seen my mother to the point where she could not stop crying for pretty much the duration of the day. My dad called me about 2 in the afternoon and said mom was having a very hard day and asked if I could come down (Even though my mom did not want me to see her so upset) I went down and walked in they were trying to get her comfortable and she was just sobbing. She has been so brave so far I have not seen a tear (from her) but yesterday she just lost it. She is so flustrated with the slow progress (Yet there is progress) She just wants to go home she says. She asked them to take her off the vent but when they explained to her she would die she fortunately changed her mind. She is so overwhelmed with sadness and flustration. She cant’ believe the time it is taking to get use of her hands back and to be able to be off the vent. The Physical Therapist can feel muscle movement in her upper arms and she is getting stronger in the upper part of her body. They have had her on the tilt table every day and she is up to 35 min. and today they had her in a chair position for about 1 hr. she tolerated that well. They are now giving her a different nerve med. (I cant remember the name starts with a L. ) and this seems to help her more and not sedate her as much. I know part of the reason she is struggling so much right now is that in the month of Sept. is all my kids (4) b-days. She has always been such a part of there lives and previous b-days she really misses that. I do take the kids in often expecially my youngest 5 whom she is very close to. On there b-days I take them to see her so she can see them and wish them a happy b-day. Anyway, we both shared a lot of tears yesterday even my dad who has been a hero in my eyes with her. He is there every day from 12:00 – 8:00 and he is her advocate. He even shed a few. I know we will have hard days along with good and fortunately today was a good day. Saturday is my parents 46 wedding anniversay and my dad is throwing her a dinner in the cafeteria he has made arrangements for the Resp. therapist to be there so she can be by some great big windows and see outside and be with family. So to get her ready for Saturday my sister in law came and did her hair and I shaved her legs. We did get a good laugh out of that. I have never shaved anyone elses legs and I got shaving cream all over myself it was good to see her laugh so hard even at my expense. So we did have a better day today. I just keep telling her next Sept. we will all feel more like celebrating and we will have some great parties next year when she is home maybe not 100% but happy and home. Anyway, thanks again for taking the time to write back and thanks as always for your advice and kind words.

Thanks again,
Dawna

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 I cant believe it is now December. If anyone would have told me back on July 8th (when mom went into hospital) that we would still be in the hospital in December I would not have believed it. Mom is doing well. She is still on the Trach. She cant tolerate the speaking valve or button yet very well. They cant figure why. Her vocal cords on her left side are not working well yet but the Dr. cant figure why she can tolerate the button and speaking valve sometimes and other days she cant tolerate it at all. She has a lot of anxiety over her breathing and is very nervouse when they try to button her. Her hands are working very well. She can move them and touch her face but her coordination is not all there yet. She is able to move her legs and feet a little bit but not very much. She had a very down week last week. She cried a lot and was very emotional. I think with the holidays she is having a hard time. Nobody goes into the hospital and thinks that 5 months later they will still be there. She wants to come home but at the same time is very scarred. She does rehab and physical therapy every day but hates every minute of it. We are still praying for Christmas to have her home. Thanks for all the support again.

Dawna

When mom went into the hospital in July we were told this was going to be a very long road. The Dr. told us that mom would be home for Christmas. For some reason that stuck in my head and I told myself that I could get threw this until Christmas. Halloween came and went (We thought she might come home) Thanksgiving came and went (Very hard without her) and Christmas is Thursday and Mom came home today. We are so thrilled to have her home. She tolerated the transfer very well. She still has the trach. She cant tolerate breathing without it she has some upper airway blockage still. She has the feeding tube still her appetite is not real good yet and she is still cathed but she is home. We are so blessed that she is in such good spirits. She cried when we got home in the house (We all did) She was in her wheelchair this afternoon with everyone and she smiled and laughed and loved to in the middle of everything again. We are praying she will continue to make progress and that her legs will begin to get strength in them again. She can move them but very little. Her hands and arms are about 70% but even that is wonderful. To see her lift her blanket or scratch her nose is wonderful. We are so excited to watch her joy in all the little things again we cant wait to see her recover more and more every day.

Thank you for your thoughts and prayers they are a true comfort.

Dawna