Sunday, November 25th

Yesterday, Stan had a seizure. He is now unresponsive . We are keeping him on IV meds and morphine to make sure he will not be in any pain. We are waiting to see what happens.

November 23rd

Although Stan says he feels better (and his mouth looks much better and his stomach feels good) he is more incoherent again. It is tough to be thankful--I am thankful that Stan feels better and really does not seem to mind being in the hospital and naps frequently,but I miss him--my life and my marriage will never be the same--it is difficult to realize this and move on, but somehow I will have to adapt.

Tuesday, November 20th

Stan seemed a little better today--mouth looked better,less diahrrea.His arms and legs are still quite swollen and we had to cut off his wedding ring today because his finger was turning blue--very sad. He does nap often and he seems reatful when he sleeps,so that is good.

Monday November 19th

Stan's GVHD is very persistent. The doctor feels that it will take Stan's body another 2 weeks at least to fight this. In the mean time,his steroids have been increased and his arms and legs are swollen. The antibiotics have also been increased so he won't "catch' anything else. Almost all of his medications are IV now because of the sores in his mouth (I thought they looked a little better today) and now Stan is receiving IV "ATP" (which is protein because he is unable to eat much food because his mouth and whole digestive tract are sore). Also ,he is on 24 hour IV morphine--to try to ease the pain of the GVHD--the doctor said tonight that the best thing Stan can do for now is to sleep so his body can try to repair itself. The morphine does help with that. So, I spend alot of time holding his hand and watching him sleep.(again,though,there is no involvement of his organs--they do blood and urine samples several times a day to watch this--so that much we are thankful for).

Saturday,November 17th

Stan's rash is looking better. His GVHD of the mouth and digestive tract are not better. The docs have increased his pain medication and his steroids and are hoping to see an improvement by Monday. The good news is that the GVHD has not gone to any of his organs--his kidneys and liver are fine despite all the medications he is on.(and his CAT scan of his stomach was fine too) His mental state is coherent,but he is so medicated that he cannot stay awake too long. I am trying to be positive, but as Thanksgiving approaches,it is sad to think that Stan will still be in the hospital.After this week,I will be back at work full time--so if anyone is able to visit Stan during the day--that would be appreciated to break up his day some until I can get there after school.

November 15th

Not much change today. Stan is on 24 hour morphine IV to try to help with the pain of the mouth sores. He said he felt better today---he was very sleepy (probably due to the morphine). the Dr thought the rash and mouth and eyes looked better,I did not see much difference from yesterday.

still November 14th

Stan's GVHD rash is getting better and his mental status is better also. His mouth sores and digestive tract are still problematic. The dr has upped his pain meds in the hopes that he will be able to eat more. Also today, Stan had "raki" (spelling?) and that seemed to give him some relief at least while the process was going on.
He had a slight fever this am --we don't know why--but to be safe, the doctors were doing some bloodwork and cultures and a chest xray today.

November 14th

Stan just can't shake the GVHD and along with that he is dealing with all the side effects of the GVHD drugs again. He is no worse,but progress is slow.

Sunday,November 11th

Stan is doing much better in terms of his coherence. He is still not able to be alone but he knows people when they visit and is taking interest in the news and sports again. Also, Stan still has his sense of humor throughout all these trying times.
He definitely has GVHD of the skin (rash) and digestive tract (sores in his mouth and throat). So his steroids (to fight GVHD) have been increased and now we have to watch his blood pressure again because of that. Also his anti-fungal medicine is back on again--his anti rejection meds have been lowered (a good thing) and his electrolytes are better today so he did not need as much IV meds today. His eyes bothered him this am, but luckily it turns out that he just has dry eye and the Dr gave him eye moistening drops and a cream that would help with the painfulness of dry eyes (the cream made his vision fuzzy, so walking was out today--he felt dizzy) He did walk around the floor yesterday with a walker. Tomorrow he should get OT and PT again. He will be in the hospital for at least a week until the GVHD clears up AND his blood levels even out again.

Saturday,November 10th

The lumbar puncture showed no infection,so that is good,but we still don't know what is causing all Stan's problems. The doctor did say that he may have the equivalent of a cold,but for Stan--it makes him very sick and weak. This seems to show true in that his electrolytes are all off and his red blood count was low too. He will most likely be in the hospital for another weak until all the bloodwork levels out a little and then we will see where he is mentally and physically at that time.
He HAS been more alert the past 2 days when he is awake.He went for occupational therapy yesterday.
His GVHD is back a little too---he has had an upset stomach and a little rash--the Dr is on that right away.
Stan DOES enjoy visitors for short periods of time--he recognizes everyone and can hold a little conversation--he just gets tired quickly.(he is in Albany Med,room D-470.

Thursday, November 8th

We got the results of some of Stan's tests. So far the CAT scans and the EEG are all fine--so it looks like no permanent neurological damage. Today,he had a successful lumbar puncture, so now we will wait to see if anything develops from those cultures. In the meantime, he has been more coherent today while he was awake. His electrolytes have been way off (probably due to all the IV fluids he gets and that his body is fighting "something". Tonight he is going to get some red blood cells (again because his body cannot fight an infection and restore all his blood after a transplant). His tremors continue--hopefully he will see physical therapy again tomorrow.

Tuesday,November 6th, Stan's Birthday

There is no real news today. Stan was a little more coherent today. He had an EEG and a physical therapy evaluation. We still don't have any idea what is going on--just more tests.

Monday, November 5th

No real news today. the doctors really have no idea what is causing Stan to have all these problems. He had another CAT scan today,this time the chest area and he had more blood tests. We are waiting for the results to know what is going on and how to proceed.
People can visit,but you never know what his mental status will be at that moment---sometimes he is better than others. He is in Albany Med in room D-470.

Sunday,November 4th

Stan's mental status was worse this morning as was his physical shaking,he refused to take his meds and he had a fever,so we went by ambulance to Albany Medical Center. He was admitted and is in room D-470. They have given him antibiotics in case the fever is from an infection. They did a CAT scan and they will do more tests tomorrow to see if all these symptoms are drug related or neurological.

Friday,Nov 2,2007

So today the Doctor agreed to take Stan completely off of two of the drugs which have so many detrimental side effects and to decrease the dose of the third drug. We have to increase a different drug,but he has been fine with that drug in the past. We are going to try to get him Physical therapy at home to help with walking and activities of daily living, and have the visiting nurse come in. Unfortunately, if his mental status does not improve with these changes, we have to look into where he will be when I go back to work. This is still a very stressful period of time for me---I like to know the plan and see results--everyday seems to bring new challenges.

Stan would welcome visitors now--afternoon/evening seem better than morning. (please,however,if you have even a sniffle--wait until you are well--his immune system is still very compromised)

Day 79

I am sorry I have not posted for a few days. Stan's tremors and incoherence were getting worse and so we decided to come HOME (to NY) where he can be in familiar surroundings and hopefully get him to function better. His blood levels are consistent (good), but we need to wean him off some of his meds whose side effects seem to be causing the tremors and mental problems.
Please no phone calls or visits yet until he becomes more stable at home--and we cannot accept any food items or flowers.
I will continue to post from home.