Day 137

Well, today has been another rough day. Mom is having a difficult time adjusting to her new surroundings. She has been very agitated and confused again today. Neither she nor Dad got much sleep last night and tonight looks like it might be a repeat. Hubby and I went late this afternoon to give Dad a break and they went to get something to eat. When Dad got back, some friends from church dropped by and Deb stayed and we had Dad go and take a nap. These last few days have been very hard on him. B has gone home for the next month to spend time with her family, celebrate two birthdays and spring break. So we hope that we will be able to get a good schedule worked out so Dad can get the rest he needs. Rae has started softball so she is constantly on the go. Please pray that for Mom as she is still not out of the woods with the pneumonia and that she can adjust to the new hospital.

Day 136

Well, we are trying to get Mom settled in here at "home". She had kind of a rough day with confusion and agitation. I am hoping it is just being somewhere different. Hopefully tomorrow will be better. Nothing much else to report today.

Day 135 ~ Thursday

Today has been a long day. Dad called me this morning around 11:20 to let me know that we would be heading to Houston because today was the day. We headed out around 1:00 pm. We were told that transportation would be there between 4 and 5. Then we were told that they would be there around 6. And they showed up at almost 8. Better late than never! As Mom and Dad and the transport people were making there way across the miles of MD Anderson, B and I were heading to our apartment to clean it up and turn in keys, etc. Bye bye apartment, it was nice meeting you. Then we ran by the grocery store and picked up a few things with the gift card that the church we rented the apartment from had given us. We were on the road by 9:30 pm and made it to BCS and Mom's new home by 11:25. We got Mom all settled in. What a wonderful to surprise to walk into her room and to see the welcome home sign, note and balloons from our church family. Thank you for the welcome. I walked in my door at 12:52 and am ready for bed. Oh, before Dad and I left, Mom said that it still didn't seem real that she was back in BCS!! WE ARE SO THANKFUL TO HAVE HER HOME!! Thanks for the prayers for this step. Now we just need to get her healthy! Night y'all.

Day 134

Not much to report today either. We are just waiting and waiting and waiting. Since I don't have much to report, here is a picture of a sunset Mom, Dad and I saw last year. Just a little piece of God's handiwork.

Day 133

Not much to report. Mom was still really tired today. This picture is from last Friday.

Day 132

Update from B:
Well this has been a different kind of day. We didn't get much sleep last night, mom was very restless and finally settled down between 3-4. We had dialysis this morning but today we had it in her room because they are remodeling ICU. She had a hard time with her blood pressure dropping during dialysis so they didn't take off as much fluid as they wanted. Dr. deLima told us that we are pretty much just waiting on insurance to okay mom's move and then I guess the next move is making sure they have a bed for her. As of right now things are looking pretty promising but we still don't have a yes. She hasn't eaten much today because her stomach has been queasy since dialysis. We are working on it though dad. Well that's it for now except they are testing her thyroid to see if that may be part of the reason she is so tired.

Day 131 - Sunday

Not much to report today. Mom did all of her exercizes with Dad, snoozed some and that is about all because she was worn out. She had some shortness of breath today but the Doc thinks that is because she needs dialysis which will happen tomorrow. Although things are looking better than they did on Thursday, we are stilll not out of the woods yet. Hopefully we will have good news within the next couple of days about coming home.
Hope you all have a good week.

Day 130

Well, today was pretty uneventful. Mom FINALLY got some sleep last night. Dad said that she went to sleep around 10 and woke up around 7 this morning. She really needed that. This afternoon we stopped by and we were able to go with her to sit outside for a while. Unfortunately the wind had started blowing and it was pretty cool so we only stayed out for about 10 minutes or so. Dad said that she has sat up for most of the day at a 45 degree angle or more. She sat in the wheelchair for over an hour and when we left she was pretty tired.

Day 129

Well, we may be getting to move Mom closer to home. Real close actually. We may be moving her to an acute long term rehab place at home. The doc told her that he thought it would be good for her to be closer to family, home and friends. This will happen if they have room and the hospital will take her.
She seemed to have a good day. She didn't sleep well again last night but stayed awake most of the day. Our dear friends, the Owens came by to visit with her and Dad. Also all three of us girls and our husbands all went to visit her this afternoon. Before we left we sang her some church songs and she seemed to enjoy it. The nurses hid behind the door and listened to us too!
Well, that is all for tonight. I am pooped and ready to hit the sack. Night y'all.

Day 128

Mom and I finally went to sleep last night around 4:00. She was having some strange scary dreams so we were up a lot. When I wasn't helping her, I was laying in bed praying for God to heal my Mom so that she can come home. Today was a much better day than yesterday. She was coherent and she worked hard. I told her this morning that we were going to have to work and I told her what the game plan was. So, we got up and she ate some breakfast (she also ended up with a chocolate all over her and it was cold, I jinxed her by telling her to make sure she was holding it good) and she did some hand exercises (she sometimes has the shakes really bad) and sat up in the bed at a 45 degree angle or higher (usually higher). She napped a little and then went for a swallow test (which she passed), came back a napped a little more. The PT came and she did really good with her leg exercises. She was able to move her legs a lot by herself which is something she hasn't been able to do much of. Before I left this evening she had eaten some dinner and Dad was getting ready to sit her up again in the bed. I found today to be encouraging but hopes that today wasn't just a fluke. Oh, she smiled more today which was so good to see.
Sometimes when day is ending and it is time to update the blog, I just don't want to have to rehash the day or I am just so tired but I realized how important it is that I go ahead and take the time to update. Sometimes I wonder if anyone even reads what I write because much of the time there aren't any comments. Then my Grandmother will tell me that so and so called to see why I hadn't updated or I will talk to someone who tells me that they read everyday and are so thankful that we have the blog to keep them up on how Mom is doing and I see that even when I am tired or cranky or whatever, I still need to take the time to let you all know what is going on. So with all that being said, thank you all for your prayers, for taking time to read this blog, for your encouraging words and for being such great friends.
I talked to some friends tonight that I hadn't talked to in a long time. It was so good to hear your voices Scott & DeAnn. We love you and hope to see you soon. Thank you also for your encouraging words tonight. Sometimes you just really need to hear that other people think you are doing a good job. So thanks for calling, I needed our talk tonight.
And with all that rambling going on, that brings me to this, please keep Mom and Dad in your prayers. Mom had a good day but things can change quickly (you never know what pneumonia will do). Our love to you all.

Day 127

Today I had to be part of a conversation that I was not ready to deal with and then make a phone call that I didn't want to make. The conversation was with the doctor and his group that is in charge of Mom's care. It consisted of them telling me that Mom had pneumonia and that things were not looking too good for her. The phone call was to my Dad to let him know what the doctor had said and to get him to come down here.
Dear friends, I know that we have already ask so often for prayers from you but we still need them now more than ever. Please pray that it is God's will that Mom recovers fully from this. She has so much more to give to us all. We are all scared. We truly thought that the transplant was what we had to worry about. I am sorry that this is short but I am really having a hard time (as we all are) dealing with the what mights right now.

Day 126

or is it day 1,000,026? I kid you not, it seems like it is the latter. I have always known and understood that being a patient is difficult but never in my life did I realize just how hard it is to be a caregiver and none of us are even doing it full-time (but it still isn't as hard as being the patient). I honestly do not think that I could do this full-time or for an extended long-term time.

Today has been another long day. I was up at 5 am after another night of little sleep. At one point when I was up with Mom, she ask me why I was being so ornery. I just told her that I had a really good teacher. She has been very confused and disoriented and the doctor thinks that it is due to the treatment so that is one thing that is difficult to deal with. She calls out at night for my Granddad and my Granny, she talks a lot in her sleep and last night she wanted out of bed (this led to the ornery comment) and she couldn't understand why I wouldn't let her. Anyway, we went to treatment, came back to the room, rested a little, finally got dinner ordered and picked at (how do you get an adult to eat when they don't want anything?) and now we are waiting for a chest x-ray (I am writing this at 8 pm). I am hoping that she has been up enough today that we can sleep some tonight. We are getting a break tomorrow and don't have to go to the hyperbaric treatment. Yippee! But we do have dialysis and they will probably come early but if they do that, we can go to exercise class. So with all that being said, I am going to close for tonight (still waiting for the chest xray at 8:22 pm). Until then. . . . . .toodles!

Day 125 - Monday

You know what. . . . .5:00 am is early not matter where you are! I got up at that horrible hour so I would be ready to head to the hyperbaric chamber. Of course, we didn't leave until 7:40 am. I laughed this morning as we took off and got to the hospital in 4 minutes. It takes longer to get all the way across the hospital than it does to get to the other one. Our transport men today nearly killed me. I thought I was going to have to run to keep up with them. They were very nice and very gentle with Mom. When we got back from hyperbaric, some more friends from church were here to visit. They bought Mom a new cap to keep her punkin head warm. Then we went to dialysis where we both slept. Even though I nearly froze to death. It was like a meat locker in dialysis and at the other treatment. Not only was it a long day because it started so early but Mom is not sleeping much at night. She was really restless last night so I turned on the tv and she watched the olympics most of the night. I didn't get much sleep either so we are both pooped. With that being said, I am going to close so I can try to get a little more sleep while I have the chance.

Day 123 & 124

Saturday: not much to report today either. Mom had a visitor from church today. We are glad that our friends are able to come visit her.

Sunday: Walking into Mom's room was like taking a step back in time. Apparently one of the side effects of the hyperbaric treatment is confusion and extreme tiredness. The tiredness is one thing but the confusion is so very frustrating for Mom and for the person with her. She isn't sleeping well at night and the days start very early for her. Other things going on right now. . . .still not able to get up, unable to walk, not much appetite, and well, I guess that is all I can think of. The doc thinks that we may can go home in March (?) which will only be five months after she got here. Anyway, please continue to keep Mom and Dad in your prayers. We are all weary and feel like this has gone on forever. Who would have thought that the strongest woman I know would be having such an ordeal? Please keep sending your notes of encouragement because she needs to know that we ALL want her home.

Day 122

Not much to report tonight. Talked to Mom and she was really tired and getting ready for bed.

Day 121

Well, I don't have much to report today. Mom went on her second field trip to Herman today for hyperbaric treatment. They took out her folley today so I guess she is feeling more free than she has in a long time! Well, that's all I have.

Day 120

Oh my, that sounds like such a long time. 120 days. . . .I wonder how many more there will be. Anyway, here is B's update from today.

Well mom had her first visit to the hyperbaric chamber this morning. She said everything went fine and the guys in charge really made her feel comfortable and watched to make sure she was okay. We won’t be getting the catheter out today, probably tomorrow since they didn’t keep it kinked like the doctor wanted them too. Oh well, now I can kink it or undo it when she needs to go to the bathroom. We will do hyperbaric the rest of this week and who knows about next week…we have to get up early so she can eat breakfast and get her morning meds before we leave at 6:15-6:30. Today we went to exercise class from 1:00-2:00 and as of now mom is still sitting in her wheelchair watching the movie Earth. I will let you go for now.

Day 119

Ooops! Just realized that I forgot to post yesterday. Here is the note from B.
Well this morning we had dialysis and it went well. We saw the Renal doctor and for the next 24 hrs they will be collecting urine to test. If the urine is “good” urine then they will look at decreasing the dialysis. We also saw Dr. DeLima and he wants the catheter gone by tomorrow if mom is comfortable with that. It is up to her! She is feeling good, lunch upset her tummy a little so she is taking a little nap. We have done 1 set of arm exercises this morning which she said felt good and we will do more later. They want her active for at least 3 hours a day right now, we will do what we can.

Day 118

Here is the update from B.

Hope all is well for you today. We are having a good day. We haven’t gone to the evaluation for the hyperbaric chamber yet, it could happen today or tomorrow. This morning mom got to ride the hoyer lift to get into her wheelchair, it was interesting to see her dangling in the air! We went to music therapy and the went downstairs just to get out of the room. She stayed in her wheelchair for a little over an hour!! Her catheter is now being clamped in hopes that her bladder will start working again…keep fingers crossed and prayers going!! The urologist will come and see her this afternoon and check to see how things are going. We are also going to get a visit from psychiatry. They decided it would be a good idea for her to have someone to talk too since she has been in here so long(finally)!! Dr. DeLima was happy to see her in the wheelchair this morning!! Well that is all for now. Oh, she did get platelets this morning but her count was 24 so it stayed up but was still below 30. White count is 1.3,on the low side.

Day 117

Not much to report today. Mom should be re-evaluated tomorrow. Dad said that her urine looked a little clearer today so maybe the bladder won't get as bad as it was before and they can get it taken care of. Apparently Mom set a goal today to be out by the end of the month. That will mean a lot of work on her part but I know she can do it if she puts her mind to it.

Hope everyone has a good week.

Day 115 & Day 116

Ok, so I decided to put the actual number of days that Mom has been in the hospital.



Friday: Today my Aunt D and my GMom came so Aunt D could donate platelets. When she went to donate, they tested her blood and her white blood count was too high and she couldn't. She headed back to Mom's room and we were able to spend the day together. It was really nice to have company to make the day go by faster. Mom enjoyed getting to see both of them. We were supposed to have physical therapy today (as we are supposed to do everyday) but they never showed up so Mom and I did it ourselves. I think she gets a little tired of us being there all the time. Dad and hubby got there and we left and headed to the apartment for a night's sleep on a real bed!

Saturday: This morning I went to Mom's room to give Dad his car keys and apartment keys. While I was there the doctor came in for his daily round. I will start out with the good news and continue on from there. Earlier this week Mom had a bone marrow aspiration and a chest x-ray. The bone marrow report was clear - no leukemia. The chest x-ray report showed some fluid around the lungs but that was all. Thank goodness for that. Now the not good news is that the procedure they did on Mom's bladder didn't work like it was supposed to. Yesterday her bladder started bleeding again. I don't know if I have told you what is causing this or not. The cause is a virus that anyone can carry but when your immune system is suppressed, it rears it's ugly head. Hers reared its head in the bladder and won't go away. Monday she will be going back to Memorial Herman for another evaluation. More than likely she will begin hyperberic treatments. The treatments will get pure oxygen into her body which is supposed to promote healing. We hope it helps. This will be everyday which includes a trip to Memorial Herman by ambulance, two hours in the chamber and then back to MDA. She will still have to do dialysis three days a week. The doctor said that he didn't know how long it will take to clear up. So, as you can see, we still cannot see a light at the end of the tunnel.

Please continue to pray for Mom and that this virus clears up soon so she can get back on her feet and run, not walk out of the hospital.

Day 14

So far so good with the procedure on Mom's bladder. The doc (who looks like he about 12) came by today and said that all looks good. Thank goodness. We had dialysis this morning and physical therapy this afternoon. Tonight we are watching tv and relaxing. Oh and we had company today. David (used to be the youth minister at our old church) came by to see how Mom was doing. Unfortunately he was here because his brother-in-law had a brain tumor removed so please keep Ken in your prayers. Until tomorrow!

Day 13 - Field Trip Day!

Today was another L O N G day. The urologist came by early this morning and I had ask him to wake me when he did. Nearly scared me to death! I am sure I looked very frightened but I quickly recovered. He was still pleased with how the bladder was looking this morning. Another treatment for the bleeding bladder problem is going into a hyperbaric chamber. The treatment is everyday of the week and you are in the chamber for 2 hours. We went for a consult and evaluation and were told (thankfully) that the doctor does not recommend the treatment at this time. Finally. . . . .something goes our way!! This consult required an ambulance ride from MDA to Herman Memorial. At least we got out of the building!! That is all we have done today. Tomorrow will probably be dialysis again and hopefully some physical therapy (finally).

Day 12

Today was a l o n g day. We had dialysis this morning at 9:45 which lasted 4 hours. Then headed straight to x-ray to get a chest x-ray. Got back to the room about 3:15 or so. Waited around for a while, Mom got a bath, urologist came in to get consent for surgery and waited. Finally left the room around 5:30 or so. Mom headed to surgery and Dad and I headed to the waiting room. While there, Dad did some crossword puzzles and I worked on a puzzle. At 7:30 the doc came and visited with us about how everything went and what he hopes will happen. We hope that this will stop the bladder from bleeding so that she can get better. Please continue to pray for Mom. I can only imagine how all of these setbacks effect her. Hopefully tomorrow we will have an easy day!

Day 11

Oh, the joys of dealing with those who don't know how to read a clock or just can't stay on a schedule. This morning we were told that we would have a bone marrow aspiration at 9:00 am but they may be a little late getting there. We were also told that we would have photopheresis at 1:00. Well, let me tell you how the day went our 9:00 am appointment showed up at 3:00 pm. One of the nurses who came to do the aspiration told us that photopheresis had cancelled. Sure was nice that they let the patient know!!
Don't you just love it when they tell you that you have to build up your strength so you can get out and that you would have physical therapy every day. . . . . . .and PT doesn't show up. Can you say FRUSTRATING? I am so thankful that we are at such a good hospital but my goodness, are they trying to drive us all INSANE?????
Today, a urologist came to check on how things were going with Mom's bladder. Of course, he comes during the time that I am away from the hospital. Anyway, she is having a procedure tomorrow to see if they can't get the bleeding to stop. The procedure is sometime after 3:00 pm (no food or drink after midnight) and we know how well they stay on schedule!! Please say a prayer that this helps and that we can get her stronger so she can jump on her pony and get out of Dodge!!