Unexpected Visit

We had to go into the BMT yesterday because T got up at 4:30 am to go to restroom(in the dark) and got dizzy and fell. I found out I cannot support his body weight. He sat down on the bed and then decided to try to make it to the bathroom. He made it as far as the door and grabbed the door facing and went limp as a noodle. He did not remember doing that, anyway, I checked his blood pressure and it was SOOO low! Of course he fussed but I called the doctor and it took Lidia to convince him into coming in. They kept him and did blood pressure sitting, laying and standing. The standing is the problem, his pressure bottoms out and heart rate goes way up! They started him on a new med, so 32 medications he is on now! Hopefully this will take care of it! Butch came and stayed with him today so I could go into work and they had a good visit! We have a new addition to our family! Tracy(Karen's daughter)gave birth to Brooke yesterday! Don't know the details, but Kristina said she is beautiful! Her pictures have already graced facebook. Hopefully the rest of the week will be uneventful! Pray it is! Hugs and kisses! Alyce

Great News!

We had a GREAT visit today! They are bringing him down on the steriods and the immune suppression meds as of today! That is HUGE! He is going back on the fungal meds to protect him and that is a great thing too! We have been so careful because we know it could be deadly to him if he were to come in contact with something they could not get rid of, especially in his lungs. We only have to do the antibiotic iv now once in the morning and fluids in the afternoon(only 7 more days left of the fluids), not sure how long he will have to be on the iv antibiotic, just depends on how the test results come back. We know at least 14 more days. He has been doing his excercises the pt gave him and it is helping his strength. Dr. Salzman was in a crazy mood today but a good mood! You can tell T is special to her! His eyes are SOOOO much better and skin color is too! So the liver counts are going down, but she said they may go up after starting back on the v-fend, but that is expected. So we really feel God is helping him get better to do more good work here on earth! They also gave him a shot to build his red blood cells or should I say Karen's blood cells! Ha! That's so GREAT! So many people are going through this that don't have the match that he and Karen did! God is SOOO Good! We see people up there that are struggling just like we did and each person that has this done is different. Everybody's reaction is unique. It takes these smart doctors, that God has given them the knowledge, to figure it all out! We talked with Dr. Vaughan today and he is SOOOO smart! His language is way over my head! I know all of you were waiting for an update, sorry so long! We love you and God Bless Every One of You! Hugs and kisses! Alyce

Good News!

Terry and Kristina went to the BMT Friday just to get bloodwork done and Dr. Vaughan told him that his liver counts were looking much better. His eyes and skin have improved greatly! I don't know if its because he is on a medicine that is supposed to help his liver or if its being off the V-fend medicine or the photopheresis. My guess its the combination! If we can get off the steroids then he can come off the V-fend(very expensive) and would welcome that! He is on 31 different meds right now, makes our drug store happy! We have a few more days of IV of the vancomyocin and he is threw with it. But we still have the gancylovir and the fluids they want him to have a few more days. We have enjoyed the beautiful weather God has blessed us with the last couple of days, next week we have avoid the sun because of the photopheresis. All this hopefully is just temporary and soon he can be fishing again(he is REALLY missing that)!!! We will have the phyiscal therapists out this week 2 days and photopheresis 2 days so this week will be full! God Bless You All! Hugs and kisses! Alyce

Better Liver Counts!

We got some good news yesterday! Kristina has spent her spring break with her Dad mostly taking him into UAB, bless her heart! They told them that his liver counts had come down so that was really great news to us! His skin is still yellow and so are his eyes but hopefully the photopheresis will help that. He goes two times next week. The physical therapist came today and evaluated him and gave him some suggestions on getting up and to lessen the chances of him passing out by NOT getting up fast. Randy(the PT) will be coming twice next week so his week is about full! They also told them that since the liver counts are coming down that means maybe he can come down on the steroids, we'll see! That would be a GREAT thing! We are now giving a liter of fluid each day at home, he used to go into UAB for this. Home health has come 3 times now and delivered meds. in the past two weeks. They call us by our first names, don't know if that is good or bad! Sort of the same way at the drug store. Just thought I would update everybody! Hugs and kisses to everyone! Alyce

Better Weekend!

I just wanted to let everyone know that the doctor did not bring him off any steroids and increased his immune meds. This means his strength will continue to deteriorate and his immune system is 0. Home Health Care is sending a PT out next to work with him on exercises he can do at home to help improve his strength. We stopped by SCS and Teresa got some masks for him to wear when needed but he won't be getting out much except mostly go to the doctor. Can't take a risk of him getting any kind of fungus disease, if he did, it would NOT be a good thing! They took him off the fungus fighting pill to see if his liver enzymes would improve, just for 10 days. But they discovered a bacterial infection and now I am giving him 2 IVs a day, one for the CMV and now one for the bacterial infection. So complicated I know! I don't much understand why they do what they do, all I know is follow their directions and pray to God that the doctors know what they are doing will work. Kristina is home for the week(Spring Break)so at least this week I will be more comforted with her here. She loves her Daddy! We have had, so far, a much better weekend than the last three, that means no hospital on Sat. or Sun. I actually took a nap this afternoon on the sofa! Very unusual for me! God Bless All of You! Hugs and kisses! Alyce

Nurse Davidson(unofficial of course)

Thank you Karen for keeping everybody up to date! I am at home today with T. My family(at work) gave me the day off and told me to stay home with him and rest. I hooked his anti-biotic up around 9:10 am and he should be through in about an hour. Its now 9:55 am and he is still alseep and I am going to let him sleep as long as he wants to. I got 8 good hours last night so I feel much better! Since last Friday there hasn't been much sleep! So many things going on! Thanks to Karen and Butch for helping me out, don't know what I would do without family and friends! Mike Gilbert from church was his tech from the blood bank that did his photopheresis, so glad for that! Karen was right about T's attitude, he going to win the fight and re-gain his strength and return to the life we once had but with God so much more in it! God has seen us through all this and at times I think he is testing me, but I am going to be strong just like T. We will go tomorrow to the BMT and he is supposed to meet with the doctor about coming off the steroids again.. Kristina and John have been great! Last night Kristina had to walk me through the procedure over the phone to remind me exactly to hook his port up to the tubes. John came home and spent the night and helped me with T after he passed out. They both have their lives now but we are still their #1 priority! Couldn't ask for better kids! God blessed me with them! Hugs and kisses to everyone and I will update later unless things get "Crazy" again. Hopefully this weekend will be calm and relaxed! Love to all! Alyce

New Procedures

Hi again. This is Karen filling in for Alyce. She has been Sooooooo busy trying to take care of Terry and run a business I offered to write the blog. Terry got a temporary port put in last week and Saturday night it started bleeding. He had already been taken off his blood thinners for the blood clot in his leg earlier in the week but his blood was still too thin. He and Alyce went to the BMTU on Sunday morning the 8th at 5am and stayed until about 5pm. They gave him more plasma and finally got the bleeding under control. He had to have blood work done on Monday so I met them at the BMTU about 10:30 and let Alyce go to work to do payroll. They finished with him about 1:15pm and I took him to her office. They had to return to the BMTU that evening because some of his bloodwork came back showing an infection and he had to get a bag of antibiotics. On Tuesday, they had to be at the BMTU at 6:15am. They put in a permanent port that cannot be used for 2 to 4 weeks. It is completely under the skin and must be healed before they can use it. He then had to sit for 6 hours getting Phosphorus. It has to go in very slowly. The home health care nurse came out to show Alyce how to administer the antibiotics in his temporary port last night. Later, Terry had gotten up and tried to walk to the bathroom and passed out again and hit his head. Alyce watched his pupils and he was OK. He had to start his Photopheresis in his temporary port today. Alyce met Butch about 9am this morning and he took him to the BMTU. That procedure takes about 4 hours and then he will get another bag of antibiotics while he is there. Hopefully, he will get to just stay home and rest tomorrow and then back for more Photopheresis Friday. This procedure will help his liver enzymes to get normal again. Right now he has yellow skin and eyes. They are really going through alot right now and need your prayers. Terry is still very positive that he is going to beat this and return to good health again. That is my prayer. Love and Hugs to you all, Karen

Good News!

Dr. Vaughan told us yesterday that the liver biopsy came back that the GVHD is NOT in the liver now. It had been there and has done damage that will hopefully heal itself in time. That was GREAT news, according to Dr. V!!! He got the temporary port yesterday and they will start the photopheresis on Wednesday and Friday, but on Tuesday he will get his permanent port and it has to heal for 2 to 3 weeks before they can use it. So he won't be on any job sites this week! We have to get the hang of this new schedule and see how often they are going to do this and then we can hopefully plan what days are good for working. He had to have 2 fresh frozen plasma bags again before he got the procedure done yesterday and his blood sugar is much better! They started a taper of the steroids yesterday also, so that is MORE good news. They have made him really weak!!!! This time he wants to come off them as soon as possible, last time he did not! We are taking it easy today! This is the first weekend I have had to be able to relax and get some things done around the house. Last Sat. I had to bring him home from the hospital and it took all day it seemed! God has given us this beautiful day and I think we will enjoy it! Hugs and kisses to you all! God Bless You! Love you all! Alyce

Blood Sugar too High

His blood sugar is still climbing and so is his liver counts. He will be taking his blood sugar more often and he will have insulin to take when is gets too high. That is shots not a pill unfortunately! He will have a temporary port put in this Friday so they can get started with a procedure I cannot pronounce much less spell. They will run his blood through a machine(kind of like a kidney machine)and expose it to a certain kind of light and then it will go back into him. He has to wear sun glasses while this is being performed and it takes 4 to 5 hours at a time. I do not know how long this will go on or how it will affect him. After he has the port put in on Friday, the blood bank people will talk to us about it. I hope it is Mike Gilbert from church! Then on Tuesday of next week he will have a permanent port put in that cannot be used for a month, why I am not sure but will be finding out Friday. Lots of questions and hopefully will have them all answered after Friday. We met with Dr. Vaughan after his visit about them doing a story on T. He has made it a goal of his to try to raise money for the BMT unit. We see the need! There are so many people going through this that are having to sit in the aisles getting their blood taken and most of them are immune suppressed, not a good thing! He won't be working as much so if you see him on a job site make sure he has a mask on! He cannot drive right now so I am his chauffeur. Hopefully that will change soon! Thank you for your prayers and may God Bless All of You! Will update after Friday! Hugs and kisses! Alyce

Long Weekend!

As you saw Karen updated the blog for me, I am exhausted! Thank you Sis! He got out of the hospital Saturday afternoon and his heart went back to "normal" as Dr. Vaughan put it. We came home and crashed on the bed for about an hour then John and the boys showed up to put the equipment up downstairs. We fixed dinner and watched the abc 33/40 original artist show that Vera was supposed to be in, but did not sign, under the direction of Neil Thrasher, the contract binding them to a record company. We went to bed about 9:45 and slept until 8 this morning. When T got up he went to the window to look at the snow and I was on the phone. I looked at him as he approached the bed post to go into the bathroom and his eyes were rolling into the back of his head and he passed right on out. Thank goodness I had thrown the pillows off the bed onto the floor and he landed on them. I screamed for Kristina and she came down and we took his blood pressure and his heart rate was up again and pressure low. We got him back to the bed and made him start drinking fluids. After that he has been doing good all day. Of course, I have taken his blood pressure almost every hour and blood sugar too! After things settled down we watched our church service as we ate breakfast. The snow was beautiful today and Harlie really has enjoyed it! We built a fire and have laid around all day! Good day for it! We found out a little girl(4 or 5 yrs old)has the same thing, AML, as Terry. Her Mom(who is a singer Terry knows) called and talked to Terry this afternoon, her name is Victoria Sutton and she is in ICU at Children's hospital. Please pray for her and her family. On a happier note! Tara got married to Shawn Kelly this past weekend! Congrats to ya'll! T goes back to the BMT on Tuesday and Dr. V said the biopsy should be back and they would discuss it then. Will update on Tuesday! Hugs and kisses! God is watching over us! Love to all! Alyce