Day 24 and 23

Tuesday: talked to Mom and she sounded great. She walked even further today than she did the day before. She is working so hard to get her strength built up so she can get out of there.
Wednesday: about the same, sit and wait to do whatever they have on the schedule! Still feeling good. Still working on her walking.

Day 25

Yesterday I was so hopeful that I was going to have exciting news to share with you today but it didn't happen. Thanks to the changes in schedule for a CT scan, what had a slim chance of happening was not to be. You see, one of the Advanced Nurse Practitioners who has been with Mom the entire time knew how important it was for Mom to see the kids. So Ms. Z tried to work things out so that we could get Mom downstairs and to somehow get her with the kids. All we were able to do was wheel her to the windows that look out over the parking garage and wave at them from there. It was bittersweet because she finally got to "see" them but she wanted to really see them and hold them and talk to them in person and not on the phone. When we left, she was down because she'd had such hopes of seeing her precious ones.

She was able to get up and walk some and then pushed her wheelchair even further. She was also supposed to have photopheresis but at the last minute they cancelled it (so frustrating).

She is so ready to get out of there. Well, that is all for today.

Days 28, 27, 26

Well, Christmas 2009 has now passed and it didn't really seem like Christmas. Yes, we went and visited the J family in FW AND we had snow on Christmas Eve (we decided that the snow was our extra gift this year since we can't celebrate in our usual fashion) and we spent time with us three girls but there were two things missing. We really missed having Mom and Dad at home for our usual festivities. I told my hubby that one of the things I really missed this year was Mom's Christmas Breakfast casserole. It is the best and I think he really missed it to. Next year we are definitely going to have to make up for this year in spending time together!

Mom has been a little down these past few days because of the holidays. She is sick and tired of the hospital food and the four walls that she looks at day after day. Dad has been able to spend a lot of time with her and I know that helps. Us girls are ok but Dad is the one who makes things alright! They have told them that she may be out in 10 days to 2 weeks but it depends on how well she continues to do with her recovery. She is missing the grandkids (thanks to H1N1, they can't go see her). She did get to see her big sister yesterday and her big brother will be going to see her sometime this week.

Please pray that she is able to get out soon and that her kidney continues to improve.

MERRY CHRISTMAS FROM OUR HOUSE TO YOURS.

We wish you a Merry Christmas.

We wish you a Merry Christmas.

We wish you a Merry Christmas and a Happy New Year.

Good tidings we bring, to you and your kin.

We wish you a Merry Christmas and a Happy New Year.

We hope that 2010 is a banner year for you all. We want to thank you for your support over the last 5 months. We love you all. Enjoy spending this holiday season with those you love and always remember the real reason we celebrate.

Love to you all,

Mom, Dad, Giggles, Mr. Giggles, Bec, Mr. Bec, Tator Tot, Mad Cow and Rae.

Day 29

Not much to report today. We have all talked to Mom and Dad today since us girls were together for Christmas Eve. Mom has been down, well we all have been down. She is so ready to get out of the hospital and we are so ready for the same thing. When this all started, we never dreamed that she would be in there 81 days and counting. Please pray that she can get out soon.

Days 31 and 30

Well, not much to report lately. Mom continues to do well and making steps towards getting out. Today she has been really tired. It could be because she has been working so hard or it could also be that it is Christmas and we won't be able to be together as a family. I think we are going to spend a lot of time together once she is able to. Well, that is it for tonight. Like I said, there isn't much to report!

Day 33 & 32

Sunday: Today Mom got up and sat in her recliner for 6 hours. She also had visitors from our church. She really enjoyed getting to see some friendly faces! She is doing so much better.

Monday: Don't you just love hurrying up to wait on something? It seems like that is all you do when you are in the hospital. Today Mom was supposed to have photopheresis in her room at 1:00. Well guess what. . . . .she ended up not having it until late in the afternoon and then they had to go down asperesis to have it done. So frustrating. Anyway, she got up and had a shower this morning. Rae is staying with her today and tomorrow so Dad could come home and unload hay and try to get a water leak fixed at the house.

Well, that is all for today. Have a good night.

Day 34

Today we had Christmas with Dad's side of the family. It was strange not having Mom and Dad there. As always we had good food and it was really good to see everyone. This holiday season is going to be so different than what we are used to but hopefully we will get to celebrate once Mom gets out of prison. . . . .oops, I mean the hospital!
She has had a good day and was feeling pretty good this evening when I called to check in. They were lucky today and didn't have to go to dialysis until 7:00 am. It sure was nice to sleep in my bed last night even if it was a short night! Well, that is all for tonight.

Day 35

Today was a good day. This morning the in patient rehab people came in to evaluate Mom. The two ladies got Mom out of bed and into a wheelchair. They wheeled her out into the hall and Mom wheeled herself around the nurses station not once but TWICE. Yes people, I said that MOM WHEELED HERSELF AROUND THE NURSES STATION NOT ONCE BUT TWICE!! I was so very excited! After that she sat in the wheelchair for probably an hour and ate breakfast while there. By the time she got back in bed she was exhausted but I think she was pretty proud of herself. And we were/are very happy for her. She had a nice visit with one of the Chaplains from the hospital. He comes by and checks on her about once a week. I am not sure what church he is affiliated with but he is a very kind hearted man who genuinely cares about how the patients are feeling. She also had a visit from our good friends the Owens. It was good to see them. They have been celebrating the fact the he is a two-year cancer survivor.

I would like to ask for specific prayers for Mom now. I ask that your prays be that the graft vs. host disease does not come back (which it can do) and that Mom's kidney function returns to normal so that she does not have to continue with the dialysis. Also please pray that although we can not all be together for Christmas this year, that she does not let that get her down and give up again. We can always celebrate when she gets out but she has to get to that point first. She has at least another two weeks (and I think that is wishful thinking.) OH, I almost forgot. . . .when you have a stemcell transplant, you are not allowed to eat raw fruits or vegetables. Well, Mom has been given permission to eat bananas. We have to wash them before we peel them (have you ever given a banana a bath?) but at least she can add something else to her diet!!

Day 37 & 36

Wednesday: today was a day of rest for us. We didn't have to do anything which was nice so Mom decided that she wanted to get up and take a shower. She was wiped out but she felt better. She had her CVC line taken out and is now back to having a pic line in her arm and she still has the CVC in her leg. Dad came up and spent the evening with her and I went looking for shirt sleeved button up pajama tops (not easy to find in "winter") and finally got the Taco Bell I had been craving all week!

Thursday: started at 5:00 this morning. We both napped during dialysis this morning! This afternoon we had photopheresis but Mom stayed awake most of the time. She made a Christmas wreath this evening and as always it is very pretty. Tomorrow we meet with in-patient rehab so they can start working on regaining her strength.

Well, that is all I have for tonight. We are hitting the sack after the news tonight.

Day 38

You know that it is going to be a long day when the nurse comes in at 5:15 and says in a cheery voice "Transport is ready to take you down for dialysis." and I respond as I am jumping out of bed trying to figure out what to wear on this early morning excursion, "Are you kidding me? At 5:15 in the morning? to which the nurse responded. . . they usually get here at 5:00 (please note that this is in the AM we are talking about). We had the same nurse that she had on Friday during the "incident" but everything went smoothly (believe that I was watching everything).

YES, that is how our day started and no, we weren't very happy about it. We got back to the
room at around 10:00. Then Mom had her skin care and then this afternoon we had photopheresis which lasts at least 3 hours. In between times we ate lunch, I finally got a shower and Mom rested some. Now we are watching The Sing Off and Mom is talking to B and the kids (which I am happy about because she hasn't talked to them in a while), she has talked to Dad and Rae.

Today has been a good day for Mom. She is thinking clearly but I think is frustrated because she can't remember some things. I ask her earlier if she remembered what we were doing on this day two years ago and she couldn't remember. That was the day I finally graduated from college. I hope that as we continue to improve, she will get her memories back. She is missing everyone and this afternoon has been kind of emotional for her. She is really wanting to be out by Christmas but we still have a long way to go. She has really put her mind to working this week. We haven't seen the therapist yet this week but Mom has been doing her exercises on her own.

I can not get across how happy I am to see my Mom talking to family on the phone and being so positive. Our mom is coming back and we owe it all to our Heavenly Father and to our family and friends who have lifted her up in prayers so many times. We are a very blessed family. Thank you is inadequate to get across how we feel about you all.

I hope you all have a great week.

Day 39

Not much to report today. We spent six hours away from the room having dialysis. We were both ready to get back to the room. We are now waiting for the nurse to come to Mom's wound care so we can go to sleep.

Day 42, 41 & 40

FRIDAY: Well, today was eventful and not in a good way. The kidney doctors have been watching Mom's numbers to see when/if she was going to need dialysis and today was the day that she needed it. They took her to ICU which is where the dialysis machine is located and began the process. After a while, B noticed that Mom was not acting like herself and called in the nurse. As the nurse began peeling back the blankets to check the catheter (she has two, one in her clavicle and one in her groin) they noticed that the blankets had blood on them. Well, when the nurse got Mom's leg uncovered they found that the lines had come loose and Mom was laying in a puddle of blood (yes, I know puddle is a relative term depending on who and what you are talking about. . . . she lost approximately 1 to 1.5 pints of blood). Since this occurred she was told that she would be spending the night in ICU in the meantime since she would not be using the room that she has been in for 2 months and 6 days B would have to completely empty the room. B was able to get the room cleared before Dad got there and they eventually got everything to the apartment where everything is still.Normally you are not allowed to have people stay in your room if you are in ICU but because Mom had a moment of panic, Dad was able to spend the night with her.

SATURDAY: Mom had a good day for the most part. She had to spend it all in ICU. Rae went down to see how she was doing and said that she seemed to be in good spirits and was relaxed. Not much else to report for the day.

SUNDAY: Mom seemed to have a pretty good day. Mom's doctor for this week told Dad that there would be some people released on the 11th floor and that she would be getting one of the room. They were able to get moved in this afternoon. The room is a little roomier but doesn't have as good a view as the other one. I haven't looked outside because it has been dark since I got here so I will have to take Dad's word for it. So right now, everything is ok. She is mostly asleep (she does know I am here) so I am typing this and watching White Christmas. So with that I am going to close for tonight. Please continue your prayers. . .that we have no more mishaps because we have dialysis for three hours every day this week, the she continues to get stronger and that we can get out of this place (don't get me wrong, the nurses that we have become friendly with are wonderful but we are all ready to get her somewhere else).

I hope everyone has a good week.

I FORGOT, SOME OF YOU HAD NOMINATED MOM FOR THE LIGHTS PACKAGE FROM KBTX; THEY FINALLY PICKED A WINNER AND UNFORTUNATELY IT WASN'T MOM. THANKS FOR NOMINATING HER! I WAS REALLY HOPING THAT SHE WOULD WIN BECAUSE SHE LOVES HAVING THE HOUSE DECORATED INSIDE AND OUT AND IT WOULD HAVE BEEN AN AWESOME WELCOME HOME SURPRISE.

Day 43

Nothing to say tonight. Talked to B earlier today and everything was still going ok.

Day 44

Here is B's update for today:
Well we have a new nurse for the rest of the week……it’s J! Mom is doing okay today. She is really tired but it could be from them tapering off her steroids. She sat in the lounge chair for about an hour and had a milkshake and ¾ bowl of fruit cocktail for breakfast. She didn’t eat much lunch but at least took a few bites of some food I got her from the holiday party they are having. They are doing photopheresis again today, I guess since they didn’t do it yesterday. Mom is being a smarty pants today J!! The renal doctor came in and said that her creatinine levels have gone down slightly but the BUN numbers are the same so no dialysis yet.

Day 45

Today I am just going to post the e-mail B sent to us today because that is really all the news I have today!

Well Dr. Al-Atrash just left and he had good news. Mom’s chest x-ray was clear and they are lowering her dose of steroids today. She had a milkshake for breakfast and drank the whole thing and she ate about a quarter of her fruit cocktail. Her voice is a little better but she still doesn’t have much of one. Her wbc is 11.6, platelets are 38. She is getting her dressings changed right now so she is cold but other than that she is feeling good but is quiet.

Day 46

Well, maybe we have reached a turning point. . . . .today Mom got out of bed, walked to the chair and ate breakfast. Oh how we hope that this is the upward climb with no more major setbacks. Tonight she missed the church Ladies Christmas party, I always enjoy going with Mom but this year I had to go by myself. I am already looking forward to next year and taking her with me. Since she wasn't there tonight, I had to find someone else to misbehave with and found the perfect partner in crime!! Thanks Ms. Kathy! Well, that is really all I have for tonight. Please pray that we continue to uphill climb.

Day 47

Not much to report today either. Dad talked to the doctor again today and although there is a slim chance that Mom could get out in 2 weeks, it will more than likely be after Christmas. Not really how we thought we would be spending Christmas this year. Hopefully Mom will be feeling better this week and will be able to get to work on getting out. B is there with her this week and I am home trying to get all things Christmas related done before I head back next week. We shall see. Need to do Christmas shopping of my own and to find out what I need to get for Mom and Dad. I guess we shall see if I can accomplish it all!

Dad will be busy this week trying to get the water leak at the house fixed. Why so things like that always happen at the worst time?

Hopefully I will have more interesting information for you all tomorrow. Only 19 more days til Christmas.

Days 49-48

Not much to say about the last two days. Lots of sleeping has been the high lites of Mom's days. Mom still hasn't gotten out of bed yet although she told me she was going to try today but as far as I know, she still hasn't. She doesn't think that she is making any progress although her skin is looking so much better (she hasn't looked in a mirror in a while) and the doctor told her that she was doing well but I am not sure she believes him. The doctor said that although her numbers are looking good, her urea something or other was high and he was going to suggest to the kidney doctors that they do dialysis today just to get that down. It will be up the the kidney doctors (and they may not visit until Monday) and from what I understand it would be a one time thing. Hopefully I will have more interesting news tomorrow.

Half Way There

Tonight Mom and I are going to have a warm cherry crisp in celebration of reaching the half way point. Today is day 50 and thankfully it was much better than yesterday. We had the photopheresis from 8:30 until almost 12 this morning. We were supposed to have a barium swallow test this afternoon but we didn't have to. YEAH! We were supposed to get into the wheelchair today and take a stroll around the floor and to a park they were going to show us but we didn't get to. She ate a little bit but not enough. The gvhd is looking much better but is still very painful in places. Two things we really have to work on are eating and getting out of bed. Please pray for those things.

Good night!

Day 51

I really don't know what to say about today. Today I felt like a failure as a caregiver. Mom became very upset with me, the occupational therapist and the nurse this morning because she didn't want to get out of bed although I think deep down inside she knew that she really needed to. She has slept almost all day long so I am afraid that we are going to have another sleepless night. Tomorrow she has to see the speech therapist, have her photopheresis and a swallow test. I have to go to a discharge class (1.5 hours. .yuck). Please continue to keep Mom in your prayers. Although she improves in little bits and not leaps and bounds, she doesn't think that she is getting better. She is struggling.

I got confirmation today that she does have pneumonia but she is not having any respiratory problems which is good.

Goodnight.

Day 52

Today has been such a long day. At one time I wondered it you could die from boredom. This morning they did her "wound care" which takes a LONG time. Then we had a visit with the cardio pulmonary folks who wanted to see if they needed to do scope to draw fluid from Mom's lungs. No one has said "Yes, you have pneumonia" so I can't answer that question for you. She left at noon for the scope and didn't come back until 3 pm (I was beginning to think that they were going to keep her) and as soon as she got back from that they started the photophersis treatment which took well over three hours. She ate chocolate cake for dinner tonight which was her only meal of the day. They are now doing her wound care again so we can get to bed. Hopefully we will get to bed before 1 am (which is when we went to bed last night) and I hope that since she slept all day that she will be able to sleep tonight. I am exhausted and am struggling to keep my eyes open. Well, that is all for tonight.

Happy December 1st! Only 24 days until Christmas!! :)