Day 16

Today was a pretty good day even though Mom wasn't able to get out of bed again due to the central line in her shoulder bleeding. . . .still. She had a 5 pound bag of sand on her shoulder for most of the day which wasn't very comfortable. At around 6:30 or so the doctor who finally decided to make the move and put in the stitch that had been needed since last week came in and put it in. I ask him if the stitch had a money a money back guarantee and he laughed and said "No, this is pro-bono (yeah right)", so I ask if I could at least have a coke back guarantee and he just looked at me. Doctors seem to have NO sense of humor. Anyway, this week I learned a lot about being a nursing assistant. I organized all of the supplies Mom had in her room because there was so much stuff (nurses are busy I understand but they can leave a room looking like a hurricane has blown through) and they wouldn't look to see what they already had, they would just get more. Can you say cha-ching, cha-ching, cha-ching? Anyway, I organized because, well I couldn't stand the mess. It was so bad that I wasn't even able to but my luggage in the storage space because of the STUFF. So, when the nurses would come in and say they needed something I would tell them to wait, let me look in our supply and see if we have it. Well, wouldn't you know, we got rid of a lot of stuff just today because it could be found. She has four bottles of eye drops. . . .the same exact eye drops. So it got to where they would just ask me for whatever they needed without having to be reminded. Even the no sense of humor doctor ask his assistant for something and I told him wait, I should have one right here and I did. Yeah me! Ok, that is enough patting myself on the back, I think I hurt my arm!!! Anyway we had great nurses so far this week as we have had most of the time. One more thing about doctors. . . . .as you know, Mom is in contact isolation (still. . . . .for 3 months. . . .I hate those stupid gowns (at least they don't make us wear the gloves and masks all the time) ANYWAY you would not believe how many docs just walk into the room without reading the 4 (four) signs posted on her door telling them that they need to gown up. I think that is funny. They will walk in and look at you and say "Oh, do I need a gown?" I want to say. . ."No, this is just the new fashion statement and I am wearing it because I am so very much into the latest trends" but I am nice and just nod my head and bite my tongue.

Mom hasn't gone to dialysis this week because her kidney is working, it is a long way from being 100 % but the doctor said it was holding steady. They considered taking out the above mentioned CVC line that was put in for long term dialysis because they still don't know if she will need it.

Mom is getting her appetite back (thank heavens), she woke up hungry and had two eggs, sausage and a biscuit. For lunch chicken enchiladas and rice (huge plate, we both could have eaten off of it and still had left overs) and for supper an ice cream sandwich and fruit cocktail.

Dad is with her for the rest of the week so he won't have to worry about this cold weather we are bracing ourselves for! Wish we had a chance for snow with all the cold. . . . . . .

If all goes as originally said, Mom should be free from prison, I mean the hospital in 14 FOURTEEN days. She and we and well, everyone is ready for that. Please pray that it does happen.

Sorry this is so long and rambly, I am feeling wordy!

Day 17

Today was one of those days where nothing seemed to go as planned. We were supposed to have dialysis morning at 5 and were finally told at 10 that we weren't. Good thing we didn't wake up 5, we decided to let the nurse wake us up when it was time to go. We woke up around 8. Mom did get up and walk 27 steps today but didn't get to push herself in the wheelchair very far due to some complications that have since been remedied. They did photopheresis this afternoon and thankfully our nurse told them that she needed it done in her room. So, we got to stay at "home". Last week they put in a new catheter in Mom's clavicle for long term dialysis when she comes home. Well, it kept her in bed for four days because it wouldn't stop bleeding and it started up again today. Hopefully tomorrow she will get a stitch put in it so it won't bleed anymore. Although Mom got good news today: the kidney doc said that her kidney was working better and that he was cautiously optimistic, she has been really down today. I am hoping that tomorrow is a better day for her. She really deserves all the good days she can get. She is so ready to go home and is afraid that these bumps are going to keep her here longer than the 21st. So with all that being said, I will close because once again we are supposed to have dialysis in the morning. . . .we shall see. Until tomorrow.

Day 18

Well, today was a little frustrating because once again they changed our schedule which will make tomorrow a very long day. We will start with dialysis early in the morning and then we will have photopheresis. These two things can take up to ten hours if you include transport time. Anyway. . . .other than the schedule change, the day was pretty good. We had a bump in the road this morning but thanks to our very observant nurse, she figured out what the problem was and took care of it. Now we are relaxing and Mom is talking to Dad on the phone.

I can not believe how tired you get just sitting in a chair all day long. I have been ready for a nap since about 4 this afternoon. Since we have to be up so early, you had better believe that we are hitting the hay early!! So with that, I am going to say goodnight and we will chat with y'all again tomorrow.

Day 19

I am sitting here with Mom watching tv. Not much to report today. Should get back on schedule tomorrow with photopheresis and then dialysis on Tuesday. PT comes back so she can move it move it! We get a new doctor tomorrow or the next day so that is always fun. . . .not really. Anyway, she seems to be doing good, just ready to get away from this place!

I have a prayer request for you guys. . . .my friend Mel lost her triplet girls over they weekend. They had hoped that she would be able to hold on until Jan. 13 when the babies would be old enough to survive. Please pray for peace and comfort for this couple. They lost a little girl at about 5 months pregnant in 2008. Thank you.

Day 20

Not much to report today! I am happy with no news being good news! I talked to her this evening on the phone and she sounds more and more like herself everyday. I will be going to stay with her next week and I am looking forward to getting some visiting time in. Hope you are all having a good new year so far!

Day 21

Wow, it is so hard to believe that 2009 is over. I think the reason it seems to have gone by so quickly is because the last five months have been so focused on getting my Mom through the leukemia diagnosis, many trips back and forth to MDA, chemo treatments, stem cell transplant, graft vs. host disease and everything that has gone a long with the transplant. The holidays have been rather strange for us because we are used to spending them together but we have had to figure out who we were going to celebrate. Although it was different, we figured it out and had a pretty good holiday. (Yes, if you already been to my blog, you are reading the same thing!)

After having a busy day yesterday, today was a do nothing day. I forgot to let you know that Mom had to have another central line put in because she will have to continue dialysis for several months after she gets home. Dad ask her doctor today if there were going to be days added to the 100 since she has had so many problems and since she is still in the hospital and thankfully the doc said no, not at this time. Soooooooo, that means she should be home in 20 days. Keep your fingers crossed that there are no days added! Keep praying for her kidney to go back to complete function soon so that the dialysis will not be needed for long.

Well, that is all for tonight. We hope that each of you has a happy and prosperous 2010.

Day 22

New Year's Eve was spent doing dialysis and photopheresis which takes up about 10 hours of the day if you count transport and wait time. When they mess up the schedule and have Mom doing both of these things on the same day it is so hard for her to eat like she needs to. That is one of the most frustrating things these days. They are always. . . EAT, EAT, EAT so you order your food and then they make you leave it and go do something. I know one day this week it 24 hours between meals for Mom. Makes me want to growl at someone. Anyway, they have spent the evening talking to us on the phone and watching WILD HOGS (D and I were too so it was kind of like being together!). No physical therapy or anything until next week since everyone is off again for the holiday. We hope everyone has a good night and a safe night.