Day 10

Well, I am back at MDA. Although Mom has been out of bed more this past week, I don't think that she is any stronger. That is frustrating to me because I really thought that she would be stronger. We did get some good news, the doctor that she has had for the last two weeks is supposed to be her doctor for the next month. He is really nice and he talks to us not at us. Well, that is all for tonight. I think we may have dialysis in the morning and I am pooped.

Day 9

SURPRISE! Today Mom got the best gift she has gotten in a while. That gift was getting to see and touch TRay and MKay! They finally started letting kids who are not patients or receiving treatments back into the hospital. She didn't know they were coming and was very surprised when they showed up. I think that it was really good for everyone to get to visit. Rae said that they were a little unsure at first because they didn't know what they could do but they had a good visit.
I don't know anything else. When I called for an update, I just got the rundown of the visit!!

Day 8

Here is B update from today:

Well we ended up having another busy morning. They decided to do dialysis again this morning to pull more fluid off so while I was in the shower they came and got mom. I was none too happy but as soon as I walked out of mom’s room the nurse was there to tell me where she was so I went and found her. That took 2 hours then we got back in the room and ordered lunch which mom did really good eating!! She will be getting up in a little bit and she may join me playing bingo today. She is feeling pretty good, stomach got a little upset but we think it is because they added another medication that she is supposed to drink and she was already full from lunch. She only has to drink this stuff 2 times a day for 2 days. Well that is all for the moment, if I get any other good news I will let you know!


Mom did play bingo today and although she didn't win, one of the gentlemen gave her his prize which was a puzzle.

Day 6 & Day 7

Well, some of you may have been wondering where the updates have been for the last few days. . . well, I have had (and still have) the crud. I have been not felt like doing much which included blogging. Still not feeling good but I thought that you might want to know what Mom has been doing this week.

Wednesday:
Here is the update from B: We are finishing up breakfast now that the doctors are gone. We have a free day today. We found out that Friday is the last day of photopherisis and today they are cutting down the bladder irrigation more. If everything goes okay then they will stop the irrigation tomorrow!! Mom stayed awake all day yesterday, except for a couple if cat naps and we are planning on that again today. We will do PT and we are planning on going to exercise class. She is also gonna try and make it to card making today. Wish us luck!!

Thursday:
I didn't talk to Mom or B today but Dad told me that Mom stood up by herself three times today and counted to 10 while doing it. Yahoo! Last night Dad, Rae and I went to dinner at Arby's and to see the high school production of Grease. We enjoyed the show. They did a pretty good job. Sure made me miss choir (and Mr. Angel).

Well, that is all for now. Hopefully I will get a good report from B today.

Day 5

Mom had a good day. It seems like she is spending more time out of bed than in bed. This week is Caregiver Week so B is getting to enjoy the activities they are having. We laughed about this because she is there for all the fun stuff and I miss it. . . . .all. Well, that is all for today.

Day 4

Today's update from my sister:

Good Afternoon!
Well today has been a good day. Mom sat on the edge of the bed and ate breakfast then took a little break and then we got her into the wheelchair and went to music therapy for 30 min. Getting her back into bed was a little more exciting because she gets scared and tenses up and it makes it harder for the nurses to maneuver her like they need too. Anyway she got back in bed and then Dr. De Lima came in. He said the plan for the week is torture, haha!! He is planning on stopping the bladder flushing by tomorrow because he doesn’t think it is helping so we will stop that and then work on getting rid of the catheter woohoo!!! We will do photo this afternoon and then get her back up. Well that’s all for now.

Day 2 & Day 3

Saturday:
When I got to the hospital to give the apartment keys to my dad, guess who was sitting in the lobby. . . .You guessed it, Mom and Dad. It was so exciting to see them somewhere else besides the room. She had a pretty good day but of course was very tired and ready for bed early!

Sunday:
B is staying with Mom this week (B's daughter hasn't been feeling well and her m-i-l wasn't either, hopefully they will start feeling better quickly.). Today Mom got out of bed twice and sat in her wheelchair for about an hour each time. No trip downstairs but that is ok, as long as she is getting up.

Not much else to report. I hope that Mom continues to try so she can slowly build up her strength and get out.

I hope you all had a pleasant weekend.

Day 1

What a day! This morning we saw the doctor (we really like the doctor and wish that he had been our doctor the entire time but they rotate every 2 weeks) and he told us that she could go downstairs and outside. We were excited because she has been confined to the 11th floor since she entered the hospital. I ask him when she would be able to start eating fresh fruits and vegetables (something you can not do after having a transplant) and he ask what she wanted. She said apples and he told her to go ahead and eat them but wash and peel them. So I e-mailed my dad and he brought some with him when he came down. This afternoon our therapist got her into her wheelchair and we headed downstairs to the great outdoors! My mom is so very weak right now that by the time she gets into the wheelchair, she is pooped but she is a trooper and tries her hardest. Her nurse was going to be with her all weekend and she told Mom that she would get her into the wheelchair over the weekend so for the first time in a while, she will have movement out of the bed. She was nervous but I think she was proud to be able to get out and about. Oh, we also found out that they finally lifted the ban on children coming into the hospital. Yippee!!

Dad and my honey got there and visited for a while. Honey and I left and ate at our favorite restaurant (ok, maybe not favorite but it is where we almost always eat!), Marcos Mexican Cafe. As usual they sat us at the same table next to the windows. Then we headed to the apartment to finally get a good night's sleep. When we got there we found that our reserved parking spot was being used by someone else. We finally found a spot and headed in for the night. I had a good week with Mom but I am always ready to see my honey.

Hope you all had a good week.

Day 1

What should have been going home day. Well, we know that didn't happen but it was a pretty good day overall. This morning we were awaken at 6:15 and told that transport was there to pick us up for dialysis. We left at 6:25 and headed down. We arrived at ICU where we get dialysis and made our way through an obstacle course of carts, chairs and machines (it is always a mess) and into our room (which was also kind of a mess). The nurse we had alway makes me go to the waiting room while she gets Mom hooked up and then she forgets about me (again). She finally came and got me at 7:20 (after Mom reminded her). Today I watched Alvin and the Chipmunks and read some. Mom snoozed! We got back to our room by 10:55 or so. Mr. and Mrs. H came by after Mrs. H donated blood (thank you again for making the trip to donate and to visit) and visited with us for a while. Mom was happy to see some more friendly faces. After our visit ended, Mario our physical therapist came by and did Mom's leg exercises and was then able to get Mom out of the bed. Hip hip hooray! She sat in her wheelchair for over an hour and our occupational therapist Ann Marie came by for arm exercises. After she got back in bed, Salomi and Stella (the nurse and aide) came in and gave Mom a bath. When they got done, Mom started singing a song she made up about being clean. The nurses loved it!! We enjoyed time laughing with our nurses! Mom ask them for a warm blanket and I told her that once she was released, she was going to have to go to Warm Blankets Anonymous! We had another good chuckle over that! So all in all, today was a pretty good day, even if we don't know when we are coming home! For additional thoughts about today, go here.

Day 2

Well, today has been a slower day than yesterday. We did photo this morning in the room and then physical therapy and then a chest x-ray. Dad came down to visit this evening and Mom looks forward to those visits. As I said earlier this week, we are still at a stand still. Two weeks ago Mom was able to get out of bed and walk. Now, she can't do that. She can hardly turn her self over and she has been able to do that the whole time. She is very frustrated with this and she has been down some what. I think that another thing that is bringing her down is the fact that we hit day 100 tomorrow. Please say a prayer for her. I know that you all have been doing that but please continue. We just don't understand why so much keeps continuing to happen. Frustrating doesn't even begin to describe life right now. Thank you for following us on our journey. It helps to know that we have so many people who care about us.

Day 3

We woke up this morning to the nurse telling us that the transport people were there to take us to dialysis and they were ready to leave. Well the blood bank picked that moment to send the platelets that she needed to get before she had dialysis. So, the nurse got the platelets started and then we all headed down to ICU for dialysis (nurse included). They started the dialysis around 9 am and we finished up sometime after 1 pm. During that time, Mom slept and I watched The Game Plan and The Young and the Restless, finished a book and started another one. The room we were in was cold. We finally got back to the room after 2 pm and got Mom some lunch ordered. The rest of the afternoon we just snoozed (Mom mainly) and watched tv. I am still surprised every week how drained I am from doing absolutely nothing. And to top it off today, I have had a headache and have been kind of crabby. Anyway, tomorrow looks like it will be busy but we will see.

Hope you all are having a good week.

Day 4

Well, I made it to the hospital to spend time with my Mom. She has a new doctor for the next two weeks and he told her today that she was going to have to get to work so she could go home. She hasn't had any physical therapy since last Thursday so we are behind on building up her strength. Tomorrow might be one of those long days, we are supposed to have dialysis in the morning (ugh, I don't like early mornings!) and who knows if we are having photo or not.

She did have some company over the last few days. On Saturday her cousin Judy and her husband come for a visit, Sunday my sister Rae came and she brought our friend Mel with her and today my aunt Jane and cousin Donna came by. My Uncle Rich was here but his allergies were bothering him so he didn't come up. I think she enjoys seeing family and friends even if it tires her out.

Well, that is it for today. I think we will be hitting the sack early. I am tired and Mom was napping earlier so I am sure that she is too.

Day 6 - Day 5

Not much to report this weekend. Mom had dialysis yesterday and today she and Dad just spent a lazy day together. I will be heading down tomorrow to spend the week. This was supposed to be our coming home week so I have a feeling that there may be some highs and lows but we will see.

Hope everyone has a great week.

Day 7

New meds to try to clear up the bladder infection BUT the meds are hard on the kidneys. GGGGRRRRR. Hopefully she won't have to be on the new antibiotic. It seems like we just keep running around in circles. Over 100 days in the hospital now and unfortunately we aren't seeing anything but a small pinpoint (maybe) of light at the end. She will probably have both dialysis and photopheresis. They have decided that it is better to completely wipe her out by doing both in one day instead of one per day and just tiring her out somewhat. I guess they know what they are doing. Can you tell that I am frustrated? We are all very frustrated at this point. We really miss having her at home and she misses home.

Day 8 - Help Needed

Today Mom had dialysis and photopheresis and that is about it. They were having to empty her folley bag every 30 minutes because they are putting so much fluid through the line. They have gotten it down to having to empty it about once an hour. Sure do wish they could get the bladder infection cleared up. Anyway, Dad headed down tonight so B could head home early. He will be there until Monday because of the holiday on Monday.

The bloodbank from the hospital sent Dad a request and we are passing it onto our friends and family in hopes that you can help.

I am attaching a flyer for you to forward to your family and friends to see if they can come to one of our 3 locations to donate platelets. Please cc me in your emails so that if your friends have any questions they can direct them to me without having to bother you. They can call 713-792-7777 to make an appointment. We are open 7 days a week. Your wife can receive credit for each donation if they put your last name and patient number on the consent form they sign.

Thank you for helping with our plight.
Sincerely,
Shelly Schultz

I am unable to attach the flyer but here is some of the information you need. Donation of platelets takes up to 2 hours. You can not have taken ibuprofen products or aspirin within 48 hours of donation. You can donate every 2 days. 1 donation = 1 platelet dose. You only donate platelets at this time.

IF YOU WOULD LIKE TO SEE THE FLYER, PLEASE E-MAIL ME AND I WILL FORWARD IT TO YOU.

Thanks,
Our family

Day 9

Here is B's update for today:
So last night was a little busy. We had problems with a leaking catheter, bladder spasms, and an upset tummy. This morning(6:00) a urologist came in and irrigated the catheter and everything was running good. By 9:00 we were irrigating it again, it didn’t work so well so we are waiting on urology again but they probably won’t get here until later this evening. This morning her WBC is 5.2, and her platelet count is 17, so she will be getting more platelets today. They are now going to check her platelets every 8 hours instead of every 12 since she is still losing so much blood in her urine. She is hanging in there, tired of all the issues that keep showing up but doing ok. Not sure what else is going to go on today. I know they are looking into other things to help her bladder heal but not sure what they are going to do.

Day 10

This morning was an early wake up for Mom and B. They had dialysis at 5:45 am. Gotta love those early starts to the day! Mom was only able to get out of her bed and into the wheelchair. They are trying to figure out why she is so weak. This is frustrating to her because she wants to walk, walk, walk. Well, that is all for today.

PS: Mom still enjoys hearing your comments!!

Day 11

Not much to report today. Mom was real tired today so they gave her more platelets and have changed at what number she gets more. She was able to walk some and to wheel herself around in her wheelchair. These are some pictures from last week when I stayed with her.

Day 12

I just got off of the phone with Mom and she sounded really good. She said that they had a pretty lazy day, mainly just watched tv and napped. So, I am thinking that no news is good news!

Hope everyone has a great week.

Day 13

Talked to Dad this evening and he said that they had a pretty uneventful day. Mom had dialysis this afternoon and although they don't have a schedule no, she will have it when she needs it. She slept good last night and seemed to be in good spirits today. I think that she and Dad are glad that they don't have to go outside in this weather and do any work!



If you get the chance you can still send cards, call or go visit. I know she enjoys all of these things!

Day 14

Well, today Mom gave up another piece of equipment; they took out the catheter she had in her thigh they had been using for dialysis and photopheresis. Yeah! Mom and Rae are having a sleepover tonight and Dad is going to hang out at the apartment. Since receiving the news that she had to stay longer, Mom's chin is dragging the ground a little bit (as are the rest of ours). She wasn't able to walk any today but she wheeled herself in the wheelchair over 300 feet. AND she had non family company today. . . .a dear friend from home surprised them today and they had a great visit.

Well, that is it for tonight. We are trying to keep warm and that is taking some work!!

Day 15

Mom had a good day again today. She was able to get up and walk and push herself in her wheelchair and she said that she was pooped when she was done. They also took out the catheter she had in her leg. I am sure that she was very happy to lose one more piece of equipment!!
We have all been kind of excited because Mom was supposed to be "released" from H-town on the 21st of this month. We have ask several times if the date was going to be moved back and they kept telling us that the date has not changed. Well, Dad ask again yesterday because we were two weeks away and they told him that she will not be released to come home for AT LEAST another month. She will be going to in patient rehab at some point and depending on how well that goes, she could be released to go to the apartment but won't be home for another month. SO, needless to say, I am super bummed and I am sure that the rest of the family is feeling the same way. I guess this means that you will have to keep hearing from me on a daily basis.
Hope you enjoy the change in the weather. It is very cold at our house!

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.