Day 76

While Stan's walking is a little better today,the mental acuity has worsened. The Doctors have no idea what could have caused this reversal.His bl0od work is looking good. He cannot be left alone at all--I am not sure what I am going to do .

Day 74 not agood day

Today was not a good day. Stan is talking gibberish again. this morning he tried to walk to the bathroom and his legs gave out (luckily I was right in back of him,so he did not fall,just sank to thefloor). I could not get him off of yhe bathroom floor for 5 hours. i gave him extra IV fluids and I finally got him back to bed. He is a little better tonight--ate some food,took his meds--we got to the bath 2 more times without falling, but---I WANT TO GO HOME!!!!!!!!!!

Day 73

We spoke to the Doctor just a short time ago and he told us that we could plan on going home (as long as there are no complications) on NOVEMBER 18th) (little did he know that I had already booked the plane tickets!!!!) Hooray!
Stan has a ways to go yet in terms of adjusting and decreasing his meds. He (unfortunately) is suffering many of the side effects of withdrawal from the steroids (low blood pressure,extreme weakness and fatigue,flu-like feelings,weak muscles and tremors of the hands and legs,and IRRITABLE!) BUT in spite of all this--it is still a step in the right direction--and that is going HOME!!
So, it is day 73 after the transplant,but we have 23 days to go!!!!

Day 71

Stan's blood pressure was really low today--we are pretty sure it is because now that he is almost off the steroids==he will no longer need any blood pressure medication--so he will not take any from now until Friday and the Dr will check it again on Friday when we come back to ATC. Also, steroids down to only ONE pill a day---hooray!! He is still on the 24 hour IV fluids,but that doesn't seem to bother him and ,that,too,will be re-evaluated on Friday. The dietitian was in today--everything looks good. The magnesium and potassium are good too.
I am still hoping we will be home in time for Thanksgiving.
The weather here certainly changed while I was away--now the days are in the 70's (up until now,we had only had nights in the 70's) and last night--it got down to 49 degrees.(must be a cold front).

Day 69

I have to start with the fact that I have the greatest kids on earth!!! It was sooooo great to see them over the past few days.
Josh has done an incredible job "keeping the home fires burning". It felt so good to be in my house and even better was the bear hug from Josh.
I saw Noelle's play! The four girls were wonderful--they made the audience both laugh and cry--and they got a(well-deserved) standing ovation.
Stan and my in-laws have had some minor challenges (like the Drs changed Stan's meds twice while they are there) but they have risen to the occasion each time! I talked to Stan and he seemed fine too! He is almost off his steroids and because of that his blood pressure is getting back to normal too,so now he has to slowly reduce his blood pressure medication.He is still on 24 hour IV fluids to keep his kidneys from getting too saturated with all his medications. The doctors will check it again on Wednesday when we go to the ATC.
I reeeeeealy hate to go back to Texas, but hopefully it won't be too much longer 9about another 4 weeks if all goes well (I am keeping all my fingers and toes crossed for NO MORE COMPLICATIONS!!!!!)
Talk to y'all from Texas tomorrow!

Day 64

Well, it is 10am in Texas.(90 degress and HUMID) We have been here at the ATC since 7am and they just came to get Stan for his first physical therapy eval. I am sure he will be exhausted when he gets back.I am so happy he will be getting some PT before we leave -he still has difficulty going up stairs and he has very little endurance-(-walking around the apartment complex-wipes him out for the rest of the night--we even have to take the elevator to get back up to our apartment) His brother and sister-in-law come in this evening--so he will have to take a nap this afternoon!!1
His creatinin serum level was high today---right now the Doctors are not too worried-(it probably means his meds are slowing down his liver/kidney function) ( hopefully it DOESN'T mean that he has GVHD of the liver--but the DR does NOT think this is the case)
-Stan will be cutting back on some of the meds anyhow today and the Dr told us to give him IV fluids for the next 24 hours and they will check all the levels on Friday when he is in for his regular appointment. All of this is such a balancing act of medicines!!
I will try to post a blog tomorrow from the apartment BUT then you will NOT see a blog again until next TUESDAY---not to worry--I will just be visiting Noelle and Josh and won't be posting while I am away.
until then............

Day 63

Tuesdays ,we now spend at the apartment. It is really great to have the whole day to “get things done” (things like laundry, cleaning, setting up the weeks’ meds) (such an exciting life!!!).
Last night we had huge thunderstorms and flash flooding, so it was an added relief not to have to get to the ATC today. The sidewalks were still covered with water when I got up this morning and the maintenance crew was out picking up the branches and leaves that had fallen during the storm. The temperature, today, is 93,hot and humid—that will be the trend for the next few days. Tonight’s walk will probably be short because Stan will tire more easily from the humidity.
We have an early day tomorrow –our appointment at the ATC is at 7:15am—so we will have to catch the 6:30 bus. That also means I will have to take Stan’s 7am meds with us and also he needs to have some food with his meds,so I’ll pack a snack too.
My in-laws are coming tomorrow afternoon/evening. Thursday will be their “in-service” to all Stan’s care—it is a bit daunting to anyone just seeing it for the first time. Some of the other wives and I “meet” in the laundry room and say how much we are amazed at all the “stuff” we have had to learn!Stan sleeps most of the days we don’t go to ATC/fatigue is part of the “cure” for this illness

Day 62

Yesterday (Sunday) I just could not get AOL to post our blog! Stan is still very weak and tired,but I guess that is to be expected. I am hoping that he will get a few times with physical therapy so that can help him to build up his strength.
Today, the Doctors have told us to decrease the steroids by one pills (yay!!!) and to add another magnesium pill and 2 potassium pills per day (which is also good because previously those would have been added IV).
The foscarnet (the every eight hour IV) will be reduced to once a day on Wednesday. Stan does have some "shaking of his hands" that is due to the anti-rejection drug (tacrolimus). that is a drug that Stan will have to take for at least 6 more months--the pharmacist is great--she looks at the levels everyday we are in the ATC and if we can reduce the number of tacrolimus pills or if we need to increase the number--she will call me on my cell phone so we don't have to wait for our next appointment.
Hopefully,once some of the drugs are lessened (esp the steroids and the foscarnet),all of his blood work will even out (the numbers have gone down just a little--but not enough to worry about or to necessitate giving transfusions).
I hope I will be avle to post a blog from the apartment tomorrow.

Day 60

Slow Saturday ,Stan had his usual infusions—he is getting the hang of doing most of them—he still has to master the “Gemstar Infusion Pump”.(but he has Sunday,Tuesday and Thursday to practice before I go away for 4 days.)
I walked to the drugstore today (about 1 and ½ miles) only to find that Stan’s new prescription will not be ready until Monday—oh well,the exercise won’t hurt me and at least it was not humid out today.
Up to this point—I have been taking it “one day at a time”,but today,I actually started to plan our Thanksgiving day meal! I am planning AHEAD!!!!!

Day 59

We met with the DR today--Stan's counts are not all in normal range,but are steady. The platelets are less than they would like,but the Dr thinks that is possibly due to one of his antibiotics and as of today,we are changing it. We asked about our departure date and while the Dr would not say definitively,he did say we could probably plan on the week of Thanksgiving--so we are right on target--HOORAY!!!!!

Day 58

First I want to say;
Thank you
Thank you
Thank you Thank you
Thank you
To everyone who has been commenting on the blog or emailing us for the past few months. You cannot imagine how much I look forward to reading these messages each day.Thank you also,for all the cards and prayers—Stan and I greatly appreciate them.
Today we had a leisurely day at the apartment. Stan spends a good part of these days nappimg, which helps his to build up his strength for the days we go to the ATC. He is also learning how to do some of the care of his CVC. Next Friday,I am going to Niagara Falls to see Noelle in her play and then I am going to visit Josh for a night and then fly back to Houston. My brother-in-law and sister-in-law are going to come and stat with Stan (they are angels!!!!!)By that time,Stan should not need the round the clock IV meds—only once per day.
We also got Stan some special socks to help keep down the swelling in his ankles and feet. We just got back from a walk around the apartment complex (where we met several other couples who also have had transplants and were getting their exercise in for the day) The temperatures are still in the 90’s during the days here, but go down to the 60’s at night—so walking now was quite pleasant. We are keeping our fingers crossed so Stan will keep on this positive track and we will be able to get home on schedule!!!

Day 57

We are in the ATC until 4pm today. Stan will be cutting back on his steroids as of today and cutting back on tacrolimus (only by .5 mg) He will begin taking more magneium by mouth (now up to 2 pills a day) (one of our "fellow transplant friends" takes 12 per day). And in 9 days, the IV drug that he now gets 3X per day--will only need to be given 1X per day. Slowly getting away from the IV meds and onto all meds by pills says to me ---we should be able to go home on the 100th day (which is November 22nd--Thanksgiving!!!) WE just have to keep Stan germ free until then !!!!

Day 56

Someone asked me what we will do with all of our “free time” now that Stan does not have to go to the ATC everyday. We don’t exactly have free time—he still has to have his IV treatments, but I do them at the apartment instead of having them done by the nurses at the ATC. So, he has one IV (Foscarnet) that he gets every 8 hours—each treatment is 2 and ½ hours long. He also has 2 other treatments that he gets once per day that are each 3 hours long (and cannot be given at the same time because the 2 drugs would interact).(so,last night I had to learn how to use an IV pump) Before and after each IV treatment, I have to flush the CVC lines with saline and heparin. He also has about 30 pills to take throughout the day. So we are still quite busy, but it is soooooo nice not to have to catch a bus to go to the ATC for 4-8 hours a day. He is still quite easily fatiqued, but getting better at walking and awake longer everyday!!!!(finally).

Day 55 3 steps forward

We had a long day in the ATC today (7 hours) but the last 10 minutes made the long day worth the wait. The Doctor told us that Stan will now come to the ATC only on Monday, Wednesday ,and Friday (down to 3 days instead of 7 days a week)YEA!!!!!!! I will give him his IV fluids at the apartment on the other days. Also, on Wednesday ,he will cut back on the steroids (not completely gone yet ,but going down) AND he is to start taking 1 magnesium pill a day (also a good sign—right now he gets magnesium in his IV fluids,so starting the pills means that the Drs are beginning to wean him off the IV) SO, 3 steps in the right direction in one day!!!!!!

Day 54

This is the first time we have been in the ATC on a Sunday--every other Sunday,Stan was in the hospital or in the emergency room--so today is a first.We are here for four hours today as he gets his IV fluids and anti-fungal and some electrolytes (we have to balance the electrolytes before we get any time off).We have started having him drink only bottled water and I have ordered a water-filter pitcher so that we won't take ANY chances on his getting into trouble with any bacteria or infection.Walking is still slow and a little uncertain,but he is walking longer and farther everyday.I am almost afraid to "jinx" our good luck by saying that THIS is the way he should be progressing and that we are "on the right track"

Day 53 with cancer-you get no vacations

I was barely aware that this was Columbus Day Weekend. We have pretty much the same schedule everyday--weekends included. We are in the ATC getting Stan's IV fluids--his bloodwork is coming back--his potassium and magnesium a little low from the anti-rejection and anti-viral meds he is on--but nothing alarming. He has not needed any transfusions of red or white blood cells nor any platelets--which is very good. We are hoping that on Monday, the Doctor will further lower his steroids and possibly give us a "day off" next week!

Day 52

Today was Stan's weekly IV-IG infusion. His electrolytes are still a little off because he is on 24 hour Foscarnet (the anti-viral med). The doctor thinks that we MAY be able to get a day off of coming to the ATC next week--that is certainly a step in the right direction--we will find out on Monday! He is walking a little better everyday.

Day 51 more than 1/2 way (a little)

Good day today. Stan's numbers are slowly coming up--as is his appetite and his blood pressure is coming down!

Day 50

Day 50----1/2 way (I hope). We are back in the outpatient clinic today. Stan is getting his anti-fugal drug and some potassium and magnesium--we will be here about 5-6 hours total. Maybe the next50 days will be easier than the last 50!

Day 49

Stan will be discharged from the hospital late this afternoon. He will still have some of the 'round the clock IV meds until Friday--but we can deal with that. Tomorrow ,we go back to the ATC as an outpatient (again) and hopefully for the remainder of our time in Houston.

Day 48

We don’t have much news today. When I left the hospital this evening, the Dr had not been in yet,so we are not sure if Stan will get out on Tuesday or not. The intern seemed to indicate that he would,so we are hopeful. Maybe I will have more news tomorrow.