Ron Celebrates a Birthday

Hello Everyone...well...I know I promised to update more frequently...but it just has not happened....time just gets away from me and having time to get on the computer is very limited with my schedule.

August 23rd ...we were so happy and so grateful to celebrate Ron's 42nd birthday!
It was a special day indeed....to think, back on Jan 1, 2008...we were not quite sure if he would make it to this day.....God has worked amazing miracles and we are forever praising Him.
We had a nice get together with close family and friends...we kept it simple....we did not want Ron to get too tired out. He really enjoyed the company and his day.

We recently discovered that Ron has cataracts...steroid induced, unfortunately.
He is having surgery this month, the 17th, on his right eye...once it heals ...they will schedule his second surgery. It will be so nice to have him "seeing" again....he says right now everything is very fuzzy...like seeing through a dirty lens.

His heart seems to be doing well...his numbers are still relatively good. His last echo results were impressive. His output continues to stay consistent...kidney seems to be doing what it is suppose to be doing. The doctors were able to lower his steroid dosages a couple of times...which is great news. He has had zero cellular rejection and they are keeping the chronic antibody rejection at bay with the monthly treatments he receives at Mayo.
He still has an open wound...but it is healing very well....it has really become very small from the time it all began in January.
He continues to struggle with his lower back problems and he has been having a lot of joint pain...which we attribute to a lot of his meds.....it gets frustrating for him at times ...but he is hanging in there. I don't know how he does it sometimes.....
He mustered up the strength this weekend to take Thomas to the movies with me....we went to see Star Wars..The Clone Wars....Thomas enjoyed it. Ron is getting him hooked on the original Star War movies.

I continue to get by with my day to day tasks of work...at the office and at home....keep our heads above water as best as possible, financially. Keep praying that our economy will turn around very soon ...that people will regain their jobs and their homes...and be grateful that we still have ours.

I hope this finds everyone well.....Our thoughts and prayers go out to our family and friends in Texas that are in the path of Hurricane Ike....be safe and take cover.

Remember to keep Christ at the cener of your life.....we love and miss you all......

TRUE BLESSINGS

It is hard to believe that we are approaching two months since my last entry. How time flies.
There is much to update you on.
The house is finally coming together since we arrived home mid May...although it is still hard to keep it clean with a 3 1/2 year old running around....but we try.

Thomas is potty trained ! That is a blessing all its own. He is enjoying it....given how independent he is....he enjoys picking out which "big boy" underwear he is going to wear for the day...spiderman...Diego..dinasours..or Thomas the Train....
He can dress himself...thanks to Aunt Val and cousin Amanda who started showing him this while we were in Tucson. He picks out his own clothes and makes sure everything is coordinated down to his shoes and socks. I tell you he is three going on twelve!
He was promoted to Preschool 1 and loves being in what he calls the "big class".
He is ready to take down all the Pooh Bear decorations in his room......he wants everything now in the "Cars" theme...from the movie with Lightning McQeen. He runs around the house always saying "Speed...I am speed".....
He is counting pretty close to 20 without messing up. And, he can count in spanish to 10.
He is always singing ...from his ABC's song to This is the Day .....
He enjoys watching Veggie Tales....Scooby Doo....Backyardigans ....Dora and Diego ...and the list goes on. More than anything...he loves to pick up a book and have us read to him.....I am truly grateful for that given that Ron and I both love to read, too.

Ron is doing amazing! He is walking better than I thought he would at this time. He did not have in-home physical therapy very long. The therapist said he had done so well so quickly..there really was not much more they could do for him. I still may try some outpatient rehab but I have not looked into it yet. He still has his home health care nurse coming to check on his wound...which, by the way, is healing very nicely and has become much much smaller. She recently changed the regimen on caring for it and in just one week...what an improvement! We have a wonderful nurse in Robin...she is wonderful christian woman that the Lord brought into our home to care for Ron in such a wonderful way. We now only have to change the dressing every two days once a day...which helps alleviate my work load during the week.
And the best news of all......a true miracle and blessing from God.....Ron is no longer on dialysis!
July 2nd was his last run and he has done well without it since. His output has increased dramatically and his creatinine was near normal last week. The doctors have been so impressed with his labs.
At the beginning of July we went to Tucson for Ron's six month heart cath and biopsy. The results came back very promising. His arteries are clear and his heart function is better than what the doctors expected given everything he has been through. They have managed to keep his rejection at bay with the various treatements they are doing ...it all seems to be working well. We could not ask for anything more. The Lord continues to be there for us and continues to do amazing things in healing Ron's body....Praises to HIM!
He is doing more around the house...almost back to his old self you could say.
I remember the first morning when I was up to get ready for work and it was such a sight to walk into the kitchen and find him standing there getting the coffee pot ready to make a fresh pot. Wow...it was like old times....and since that morning....he has been making my coffee every morning.
It has been such a great feeling to come home after work and he is in the kitchen making dinner or already done making it...Thomas and I just walk in the door and sit down to a great home cooked meal ....how awesome is that!
Now...as Thomas and I get to the front door ...the first thing he says is ..."I wonder if dad is making dinner...."..and if he smells something yummy....he will say..."yep, he is".....

Life is great....there is no doubt...I have my family back.
Things get tough now and then...there are still things that Ron cannot do...but I am grateful for what I have at this moment.
I find that I am finally back into a routine ..which helps... I felt very discombobulated when I first came home...it was very hard to regroup at first....but slowly...things are coming together for me. I feel that emotionally and physically I am doing better.
Work is still a struggle....it is hard to leave my family every day...but it has to be done...it is the only way to provide for them and to keep a roof over their head. I thank God every day that he gives me the blessing of a job...when so many are losing theirs. I am thankful for the home we have...when so many others are losing theirs. We are blessed...there is no question about it and every day we must be mindful of it and know there are many without.

We must continue to pray for HIS love and tender mercy and be thankful for all HE has sacrificed for us.

I am so excited to be back at church ...Ron and I have been meeting people that kept up with our blog and stay connected to us through prayer and blog messages. It is so great to start putting names and faces together and actually being able to thank people personally for their incredible support spirituallyand emotionally. What a blessing to have a wonderful church family that really cares. I hope they continue to come up to us as they recognize us. We really enjoy meeting everyone and hope that this will lead to some very long lasting friendships.
Thoma is so happy to be back at "church school". He looks forward to it every week. He would go every day if he could.

I am so glad to finally have the time to enter a new update for everyone. I hope my next will not be two months from now. I hope to try to get on here more often.

Blessings to everyone .....to our family and friends across the miles...we miss you desperately...I hope next year we will get to make some trips out to visit everyone again...it has truly been a long year since we have seen many of you. Know that our home is always open to anyone who may want to come out to sunny AZ and visit us. We love the company. Hugs and kisses.....



And I am convinced that nothing can ever separate us from God's love...No power in the sky above or in the earth below-indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord. Romans 8:38-39

HOME AGAIN HOME AGAIN

I know I am driving many of you crazy because I have not blogged in a while. We made it back home a week ago Saturday. It is so nice to be back. Thomas is quite happy too....he is constantly telling me how happy he is to be back home. We had a very hectic and stressful first week home. They crammed in appointments and treatments for Ron as soon as we returned. Mon. Wed. and Fri...he has dialysis from 12:30pm to 3:30pm This past Tues, Wed. and Thurs he also had to go to Mayo for his photopheresis treatments which run 2 1/2 - 3 hrs. ...he was pretty exhausted on Wed. and Fri...because he would have to put in a full day for both treatments. Our day would start at 5am and we would not arrive back home until close to 5pm. My nerves were quite frazzled by week's end. The weekend came and it was nice to sleep in until 8:30am. We made it back to church on Saturday evening...it sure felt good to be back ...the message was great and we left there feeling refreshed. This week has started out a bit more calm. Not so many appointments scheduled. Ron has been showing improvement everyday. His dialysis runs are going well. His walking is improving every day. He is even using his cane again for short distances. He will use it from the bedroom to the kitchen or bathroom. He uses it to walk from the front door to the car....it is amazing to see the strides he is making. He had a bit of an infection in his wound last week...but it is starting to clear up with antibiotics. He looks great and his weight is coming off. He is now at 210.....quite awesome! I am going to try and take a few days of "me time" this week....much needed. I really need this week to mentally decompress. I did not even have a chance to catch my breath last week and my nerves were completely shot. Thank you all once again for all your love...your support and your continued prayers for Ron and our family ...his successful recovery and the ability to be back home could not have happened without each of you...and our merciful God. Blessings......

WE ARE GOING HOME!!!!!!

Dr. Smith came by this afternoon and gave us the green light to go home!!!! We are so excited and so grateful for answered prayers. No biopsy of the kidney was thought to be necessary at this time. Ron will continue with dialysis ...we will wait and see if in a few months the kidney turns around and starts to function once again. He will have photopheresis three times in one week..once a month. He will have one retuximab infusion once a month. And...he will have dialysis four times a week every week. He is going to be a busy guy but we will work through it one way or another. He looks great and feels good ....we could not ask for more.

COUNTING DOWN THE DAYS

Ron had his renal gram and his echo on Wednesday. I don't know what the results of the echo were. His renal gram did show and confirmed decreased function in the kidney but it was not conclusive if this could be due to rejection of the kidney or just acute failure due to the trauma from the infections. Some of the kidney doctors were going to review the renal gram themselves since the report did not give much information and give us their thoughts. I do not know as of yet if the kidney transplant team will want to do a biopsy. I did not see any of them yesterday or today.

Ron had dialysis this morning...it was a long morning. After that we had time for lunch and then it was time for physical therapy. He walked well today...he had a much faster pace...which we were all very impressed with. He walked another 40 ft.

We saw Dr. Smith just before dinner....she started him on vacomycin ..oral medication since his cultures have continued to test positive for the C. Diff bacteria...so he was obviously not responding to the antibiotic they have had him on. Hopefully, the vancomycin will work...as it is the only other antibiotic to treat this type of bacteria. He started taking it Wed. night.

Well...we are obviously not heading home tomorrow or over the weekend. So...we are hoping for Monday to bust out of this place. It will be four weeks on Saturday that we have been here....much too long once again.

The kidney doctors have already made arrangements for him for dialysis as an outpatient when we get home. He is getting set up for his photopheresis and his retuxamab infusions and we will continue with the home health care and PT we had when we were first discharged.
Hopefully, the transition will come smoothly.

Thomas is doing well....he is enjoying school and is anxiously waiting for us to come home.
I told him tonight mom and dad will be home in a few days and he asked ..." when they are all done with dad ...you will come and pick me up?"....I assured him I would...and that we would all be back in our own house real soon....


Thanks again for all the well wishes but more importantly for the love and the prayers everyone has extended to us ....we could not have endured this long journey without you all and the work of our Lord through you and the strength he gives us each and every day. All the glory is his.....

A BUSY DAY INDEED

As expected...today has been a busy day for Ron. He was taken down for dialysis first thing this morning. He was not able to have breakfast because later in the day he would need to go down for his permanent vas cath to have dialysis as outpatient. He is having this done right now. After they are done...he will need to go to radiology for an X-ray to make sure the placement is correct. Once he is back up in his room...hopefully, he will have time to eat something before he has to have his echo done. I don't think he will be up for any physical therapy today...poor guy. I have been coordinating with Dr. Smith and the kidney doctors a game plan for when we go home. He will start back up on the Retuxamab infusions and the photopheresis which was just approved with our insurance. She is trying something totally new for Ron in terms of maintenance therapy. It has never been done this way with anyone before. If it works ...it will be something she will definitely publish in the medical journals. Let us hope for the best and Ron will open many doors for patients to come just like him in the future. His infusion treatments will only consist of one infusion per month vs once a week for four weeks. His photopheresis will also be on a small scale than the 6 month standard treatment. He will have fewer treatments per month. He will continue to have them until Dr. Smith feels he may not need them anymore. Anything is worth trying at this point for him. We have to do whatever we can to alleviate any further antibody rejection. Tomorrow he will have his renal gram. Hopefully, it will give us some helpful information. The kidney doctors are working to get in touch with the dialysis center that Ron was utilizing before his transplant and try to get him set up there again once we go home. I am off to buy him an Oreo cooking shake so that he has it when he gets back to his room.

A BUSY WEEK BEGINS

Ron was supposed to get a new permanent vas cath implanted today. The one he is using now for dialysis is a temporary one and he is not able to go home with it. However, the informed us at the last minute that he was to go down for the procedure and he had already eaten breakfast...so it is now rescheduled for tomorrow morning. He walked several times today. His furthest distance was 42 feet...quite impressive. He just keeps pushing himself He will also have an echo done tomorrow and dialysis. I just know he is going to be exhausted by days end. Wednesday they have scheduled a renal gram. This will help them to see how much blood is being profused to the kidney. He has still tested positive for C. Diff. Dr. Smith wants to continue with the antibiotic and she also added Lactose Bacillus ...it is suppose to help to increase his good bacteria and fight off the C. Diff bacteria. We will run another culture tomorrow.

HAPPY MOTHER'S DAY

To all the mom's reading this blog tonight....I hope you all had a wonderful mother's day. Ours here at UMC was quiet. I did not get to spend it with Thomas as I would have liked. I have not had a chance to be with him for three weeks. It has been heart wrenching to be away from him...my first mother's day without him....we will have a lot of time to make up for when we get back home. Ron has been improving. He walked 24 feet today. It was a work out for him ..but he did it. His urine output is still very little. He is still under 200cc's a day. The doctors want to space out his dialysis treatments to maybe just twice a week and see if this will help to pick up his blood pressure which has been staying low and does not help to profuse the kidney well. They suspect the dialysis is pulling off too much fluid now which decreases your blood pressure. They have also talked about possibly doing a biopsy of the kidney as well. Dr. Smith talked about discharging Ron possibly by the end of the coming week. But this was before my discussion with the kidney doctors and what they want to try to do in regards to the kidney situation. I am sure by tomorrow or at least by Tuesday we will know what the game plan is for the coming week. He looks good...his color is really good. I think he looks better now than he did when he was discharged last month. He has still tested positive for the C. Diff bacteria. He continues on the antibiotic. Another stool culture was taken today. They are taken every 48 hours ..once they receive three negative cultures in a row ..then it is confirmed that the bacteria has been treated. He seems to be getting his appetite back. He is not eating the portions that he ate before ...but he is at least eating a bit more than last week. The acid reflux and indigestion seems to be lessening. They continue to give him Regland round the clock to help with this. Well...I hope everyone who has a mom..took the time to spend the day with her...or called her to remind her how much she is loved and appreciated...and/or spent time with your kids and had a great day! Being a mom is the hardest and most demanding job...but I wouldn't trade it for the world..because at the end of the day...it is truly the most rewarding! Happy Mother's Day to my mom, my sisters,my girlfriends, my aunts, my cousins....and everyone in between. God's Blessing ......

THE WAIT IS OVER...OUT OF ICU!

It was a long morning....but we finally made it out of ICU.....Ron is having dialysis right now. Since we are not in the ICU any longer...he has to be brought to the 6th floor for his dialysis treatments. Which is a nice change and gets him out of his room for a while. It seems to be going well...no clotting issues to report. He is free of all his lines except for one IV line. PT came by this morning and they stood him up and had him take some steps with the walker ...he walked a circle and back to his bed ...they were very impressed...I was ready to dance a jig!.....I just know each day is going to get better and we should be home very, very soon! He is still battling with the nausea ...I can only hope this will start to subside. The only thing he can seem to tolerate is an oreo cookie milkshake. So ...I have made several trips to Jack-n-The-Box to get him one. Hey...if it stays down....I have to give him something.....His mom laughs and says some things never change...when he was a young boy and he was sick... a milkshake was the only thing that made him feel better....LOL.....

WAITING ...AND WAITING....AND WAITING......

We continue to wait to be transferred to the step down unit. Apparently there are no private rooms available as of yet. We are all packed up and ready to go....but we continue to wait...and wait...and wait. We did our usual routine of things today ...he was given a break today from any procedures!!!!! He sat up for about 2 hours today in his wheelchair ...Rob came by to try to see if he could take some steps but unfortunately, he was feeling very sick from his stomach..he tried his best to do it ...but he just felt so bad. We will try again tomorrow. He will begin dialysis every other day now. He had a little more output today 350 cc's vs the 125 cc's he did yesterday....hopefully, this is a sign of good things to come. We haven't seen Dr. Smith today so I don't know any results on his echo or his biopsy. It looks like we will continue to wait to see if we will be transferred today...if not...another night will be spent in the ICU.

A NEW BACTERIA

Monday turned out to be a very long day for us. After Ron's biopsy in the cath lab...he returned to his room for a couple of hours and was then taken down for his CAT scan ...he was brought back to his room and within a few minutes he had someone in his room do to an ECHO. Once that was done...I finally had an opportunity to try to get Ron to eat...I went down to the cafeteria to get him a grilled cheese sandwich. By the time I made it back to his room the nurse informed me that they called from dialysis and were on their way up for his treatement......So...I rushed to try to get him to eat. Fortunately once they arrive it takes them a good twenty minutes to prep the machine. So ...fortunately, he was able to eat the sandwich along with some milk and was able to keep it down. His dialysis run did not end until 11pm. I still had to do his dressing change on his wound site and his nurse had to change the dressing on his chest tube...so we "tagged-teamed" him and got them both done at the same time. I then helped her to give his a bath so we could finish quicker and get his bed changed...and give him his meds....By the time it was all said and done...we were going to be close to 1am.....pretty crazy! Today was OK...but still had some things going on. We got him up for breakfast and he sat on the edge of the bed and was able to sit up on his own. Once again I did his wound care and his nurse took care of the dressing around his chest tube. Later in the morning...Rob with the Wellness Center stopped by to get him up to see how well he could stand and transfer to a chair. He was real happy to see how well Ron could stand and balance himself. He advised that tomorrow he will get aggressive and start getting him to take steps. He stayed sitting in his wheelchair for almost an hour.....the Physical therapist and occupational therapist then came around but at this point he had started to get very nauseous. After getting some medication for it....I helped him back in bed. Within the hour ...we were told that he was going to have dialysis and this ran for over 2 hours. Fortunately she was done by 6pm. We also found out that Ron tested positive for C.difficile. A bacteria in his intestinal tract. It can be a very dangerous bacteria which can sometimes cause inflammation of the colon. I think we found Ron's early and hopefully with the antibiotic they started him on today will take care of it quickly. The risk of developing C.difficile is taking broad spectrum antibiotics...which Ron did and anti fungal and chemotherapy drugs ...which Ron also takes. Having a compromised immune system also does not help. We can all contract this type of bacteria...either through soil, water, food, human or animal feces and contaminated surfaces...however the "good" bacteria we have in our system usually helps to fight this type of bacteria. Unfortunately, for Ron..because of the amount of antibiotics he was given...it killed off the good bacteria as well as the bad...and with all the other variables that come into play in his situation...he body was a prime area for this bacteria to multiply. This explain the upset stomach..the cramping ...the loose stools and the nausea...fortunately, he has not had any fevers and has not become dehydrated. The CAT scan they did yesterday also did not show that there were any problems with his intestines or his colon...so was I relieved. Today...Dr. Smith told us she was going to go ahead and put orders in to have his chest tube removed as well as the A-line. She advised he seems strong enough to go to the step down unit tomorrow. She heard that Rob is going to get aggressive in his therapy to get Ron walking so she is confident he will continue giving Ron the attention he needs. I forgot to ask for results on his echo and his biopsy. I do know that nothing was seen in the abdominal CAT scan. While we like being with the nurses in the ICU ...going to the step down unit is one step closer to going home...so I am very happy to make the move. Everyone on that end of the floor is happy to hear we are coming over...they are so eager to get him back. It's funny...because the staff on each unit thinks they can take care of him better than the other. There are still a few here that really care about him and want to see him better and on the road back home. For that...I am grateful. I am also very grateful to those who have continued to stand by us ...to support us and are always looking out for our best interest ....you all know who you are .....Ron and I know who you are....and words will never be able to express how wonderful we think you are and how special you all are to us ...you are a blessing to our lives and a constant reminder from God that good, caring people still do exist in this world and it keeps our faith alive because of the work he continues to do through each of you. All our love to you........

MONDAY MONDAY

Ron's morning started out with a call from the cath lab...they were ready for him to come down for his heart biopsy. Nothing to eat prior to the procedure....except for his meds. We rushed to get those done for him and his nurse rushed to draw labs before we left the unit. The biopsy went well...he returned back to his room to rest for a while. He would need to stay in bed for at least 2 hours and with his head down low for at least 30 minutes. I took this opportunity to do his dressing change on his wound site. He now is waiting to go down for his CAT scan of his belly. He has to drink this nasty Barium before he goes down. He is not enjoying it at all. But he has managed to get it done and keep it down...thank goodness. He is unable to eat prior to this procedure either. With all this going on ...he has not been able to get out of bed and transfer to a chair. Hopefully, we will be able to work on this later today. We ask for every one's continued prayers ....both for Ron's quick recovery and our desperate need for financial peace as I continue to be away from work and our financial situation becomes more challenging. No word from the doctors as to their speculation on when Ron can be discharged. He will continue to remain in the ICU until he is taking some steps...my hope is that this will happen sooner rather than later. And, from their to the step down unit...once there...my hope is that his stay in that unit will be very short and then released to go home.

WEEKEND HAPPENNGS

The chest tube is still in. Ron's daily x-ray showed a very slight collapse of his left lung...very minor but they did not want to take any chances so they made adjustments to the chest tube to help re-inflate the lung. They were not too concerned with it...they said it was very minimal and that this is not uncommon to happen. Ron was battling the nausea much more yesterday. He could not finish his Ensure and only had two spoonfuls of yogurt. He tried to eat some ham and turkey with cheese and crackers for lunch..but he did not get very far. He skipped dinner all together. He was still having pain in his belly. We have been giving him Tums to see if it helps. This morning he did finish his Ensure but could not each much of his yogurt. He would not eat anything else. The nurse gave him two different types of nausea medicine and also gave him some Mylanta. But he eventually threw up. He just did not feel well this morning. He slept through lunch...he did not have much of an appetite. I went and had lunch with some friends....it was good to get away for a little while and visit with others. They also brought us a home cooked meal ...which I really enjoyed for dinner...I am just sorry Ron was not up for it....maybe tomorrow. He did manage to get another Ensure down tonight as well as some cranberry juice. Other than that....he just stuck with water and he did have some key lime ice cream earlier in the day. The doctors are going to have another CAT scan done on his stomach to see if there is anything going on that we should be concerned about. I believe they will test him for H-pylori again ..as he has had this before. They also had to remove his PIC line tonight...his arm started to get red and warm to the touch near the PIC line. He was not feverish but it was very concerning as to how irritated the skin was and the warmth around the site was not a good sign. They put in a new IV on his other arm and removed the PIC and sent it for culture. We did not get to see Thomas this weekend. It has been hard...this is two weekends in a row we have been without our little guy. Thank goodness for phones...I can at least talk to him every night before he goes to bed. Maybe next week we will get some time with him. Ron is still feeling pretty blue ...but I hope it will pass soon. I stood him up today from the bed for the first time since returning to the hospital. I helped him shuffle to his wheel chair. He was able to sit for about an hour before having to get back in bed. I was able to help him stand from the wheelchair as well. I was so pleased to see how easy it was for us to do this...considering the amount of time he was in bed. I assured him he would be walking very soon. He did so well today. Hopefully, this helped him feel a little bit better. I will do it again tomorrow...so that he can see that he can do this once again. The nurses wanted to help him but I knew he only trusted and felt comfortable with me helping him because we had already had our own routine of doing this at home....so I did it myself. We had a few more IV lines to deal with than when we were home...but we managed just fine. He had dialysis on Saturday but was given a break today. Having him dialyzed every day has made a tremendous difference on his weight. Ron's highest weight was 117 kg..which comes to almost 258 lbs. Right now..as of this morning..he is weighing 99 kilos...which is 218...which is a difference of 40lbs....all water weight! Quite impressive! The kidney is still very sluggish. He only had an output of approx. 120 cc's all day. We will look at his labs tomorrow to get a feel of where he is at...my guess...his creatinin will still be elevated. They will determine from there if they will continue with dialysis every day or possibly switch to every other day. If I could take him home now ...I would. I know he would be so much happier there. But, right now...until he is stronger and his kidney is working better...this is the best place for him.

For the Lord loves the just and will not forsake his faithful ones. Psalm 27:28

SLOW RECOVERY

We were unable to pull Ron's chest tube yesterday and he was not able to get it out today either.
Quite a bit of fluid is still draining out which warrants keeping it in a bit longer. He is handling the discomfort a bit better now...but he wants it out as soon as possible...and I can't say that I blame him.

He is no longer on antibiotics.....all his anti-rejection drugs have been switched back to oral medications. His only remaining IV is his insulin and it looks like this will be stopped tonight and he will go back to his regular insulin injections before each meal.
They did remove his Foley ...so he can use the rest room on his own. .....aaahhhh...
However, he has not had much urine output. The kidney is not yet functioning. He has only had 50cc's of urine today vs...the 1000 he would have normally had by now.
He will be dialyzed later today as well as tomorrow. The doctors say they will give him a break on Sunday.

They started watching his caloric intake yesterday. They were worried he was not eating enough...so they were only going to give him 24 hours to pick up the pace. He has been drinking Ensure with added protein powder packets....yummmm....
I also add a small carton of milk to it because he says the ensure is too sweet.
His taste buds are a mess right now ...nothing tastes good to him right now so it is hard for him to have much of an appetite. I have been working with him to get him motivated to eat.

He was a bit "blue" today. He told his dietitian that he was very tired and sad. I was a bit surprised that he said this and I asked him to explain to me...he said it was so nice to get home and to have to be back here just bums him out so bad. He said it is so hard to find a "happy place" right now. I felt really bad for him. But, I told him he has been down longer and managed to find the strength to bounce back. He can do it again ...I have all the faith in the world in him to be able to do this. The physical therapists came by today and wanted to try and stand him up and set him in his wheel chair...but he just could not do it. He had no strength to try to stand and they did not want to push it. He was in atrial fibrillation again this morning....it happens after they give him his albuterol treatments...and so they did not want to over do it with him. He could not believe how weak he has become all over again. I just keep reassuring him it will all come back...sooner rather than later...I just know it. He is my energizer bunny.....he will keep going...I know he will.

Dr. Smith told us today she is keeping him in ICU until he starts taking a few steps. She is not releasing him to the regular floor because she knows the attention will be far more limited than in ICU. So as soon as he takes some steps out in the hallway...then he can be moved to the step down unit and ultimately home. The time frame will all depend on how well Ron progresses with everything. I can only hope he continues to find the will to fight back ...he beat pneumonia....so I hope he will continue with the progression of getting strong.

Hopefully, the kidney will bounce back soon. He has been getting dialysis ever since we arrived ...it worries me that his kidney function is next to nothing right now. I know it will be so disappointing to him if he has to go home getting dialysis again long term.

TGIF everyone....be safe all you Cinco De Mayo celebrators.

SITTING UP

Did not have an opportunity to blog yesterday. Our day stayed pretty busy and the evening was spent getting Ron settled in bed and of course....watching the San Antonio Spurs eliminate the Phoenix Suns....sorry all you Phoenicians out there....but I am a die hard Spurs fan....and why not ...they are the champs!......On to conquer New Orleans!!!! After reviewing his X-ray yesterday morning...it was determined that he had an increase if fluid buildup in his chest cavity and in his lungs. Dr. Smith advised it is because his kidney is not functioning properly ...and not clearing the waste...so it finds a place to settle in. She decided to place a chest tube into his side ..near the rib cage area. Once in place...it started to drain immediately. As of this morning ...he had put out approximately 1800 ml's Dr. Smith came by this evening and was really pleased...she said she will see how much he puts out overnight and hopefully, we can get it out in the morning. Ron had dialysis again yesterday morning....it end up being a very long and tedious run because the catheter kept clotting off. It was not a good run at all....they had to stop the machine and give him back his blood and then restart it again....the most fluid they were able to pull off was 2.5 -liters....it may seem like a lot...but now when you compare to previous runs of 5-6 liters. The night before he had had a bad run too. They could not keep the machine from clotting...the nurse tried from 4pm until 7:30pm and could not keep the run going...he had to receive a pint of blood that night, too...but she was only able to give him half the bag and then the machine clotted so bad that he actually loss 600ml's of blood that she could not return to him. I was not happy. Yesterday morning before his dialysis run...they changed out the catheter. But, it still caused problems. Today we started around 3:30pm ....and it has been a pretty good flow...he has 15 minutes left and his blood is starting to want to clot....hopefully, they can get the last 15 minutes out of him successfully. He had a pretty hard night ...he was in a lot of pain from the chest tube. Once all the numbing meds wore off...he really felt the pain and discomfort. They increased his pain meds today to help him cope with the pain. Dr. Smith him some Ladacain to help with the pain. It seemed to work. He still does not have much of an appetite yet...but I am trying to get him to eat....even if it is just an Ensure shake. Dr. Smith also said he will be off the antibiotics by the morning. I am not sure how long before he will be out of ICU but he is moving in the right direction. The infectious disease team signed off on him today. They feel the antibiotics have taken care of the microorganisms that showed up in his cultures and he is improving nicely. They were very happy to see how good he looked today. His color is back and alert. I still have not heard back on the outcome of his echo that was done on Monday. Dr. Smith did not even know he had had one done...surprise..surprise. She said she would take a look. Today's x-ray was "OK"...there is still some fluid there but hopefully, the chest tube will take care of it overnight. They removed 2 liters of fluid with dialysis today...so I am sure this will help. Two physical therapists came by to see Ron this morning and their timing could not have been better. He had asked me to put him in his wheelchair so he could get out of bed for a while. But, I had to explain to him just how weak his muscles are again. I told him there was no way he would be able to stand and get into the chair...so I asked if he would like to sit up on the edge of the bed and he was happy to try. So...when the physical therapists came into his room...I advised them that that is what he was wanting to do. They started out slow because they wanted to make sure his blood pressure would not bottom out. It dipped a little but then came right back up...he never felt light headed or dizzy. He ended up sitting up for an hour and I was able to give him a could shave. He seemed to like it. They should be by to work with him at least three times a day. They advised him to resume his exercises they taught him initially while in bed to start working on his muscle strengthening. Dr. Smith did say tonight she does not want to let him go until she sees he is walking as well as he did before we left before. She wants to be sure he will be safe at home with me. He was in agreement with her. He will do whatever it takes to get strong and walking again as before. God is great and continues to strengthen Ron and continues to heal him in such a miraculous way!

OFF THE VENTILATOR

Finally....praise God....Ron is off the ventilator. It was a long weekend waiting for it to happen....but it is finally out! Friday morning they had discovered that Ron's hemoglobin and hematocrit had dipped quite considerably. They did a CAT scan late Saturday night and Sunday morning around 5:30am ..they determined that Ron was bleeding internally. They had general surgeons in at 6am to speak with me and to look at the CAT scan and they advised us that the bleed was in between the muscle wall of his abdominal area. It was a large hemotoma ...apprx 8cm x 3cm. They did not feel that surgery was necessary at this point..especially with his condition. They plan to keep monitoring it for the next week. In the meantime...Dr. Smith ordered 2 more pints of blood ..in addition to the ones he had received on Friday and she also added fresh frozen plasma...this helps the blood to clot better. We suspect this was caused by the plasmapheresis that he received....his coagulants tend to get messed up when he gets this treatment....not quite sure why....Some of the doctors also think all the coughing he was doing due to the pneumonia may have attributed to it as well...something could have easily torn to cause the blood within the muscle and it started to leak...creating the hemotoma. Ron is very tender in that area and his doctor said it is going to be painful for a while. Last night they ran labs again and his hemoglobin and hematocrit creaped up a bit..which is good ...he has not lost anymore blood...so hopefully, it is clotting well and the hemotoma will eventually reabsorb back into his body naturally. A group of doctors came in to see him today and were pleased to see that he is moving in the right direction to improving. The antibiotics seem to be working and his fevers are slowly tapering down. He is not spiking as high a fever now at night. They are staying relatively low grade. They tested him this morning on his breathing parameters and he passed with flying colors. While I was doing his dressing change of his wound ...Dr. Smith came by and said he was doing well and that we could go ahead and remove the ventilator tube. He was happy to hear this ...he gave her a big smile and has been very alert. As soon as the tube was out ...he asked for his dad. He asked him to go and get him some Stuarts Lime soda and some Breyers Key Lime ice cream. All day yesterday he was telling me via the alphabet board that he wanted 7-Up or lemon lime soda and was frustrated that I could not give him anything. Pastor Daniel from our church, Palm Valley Church, paid us a wonderful visit today. Thank you Pastor Daniel....you are so awesome! We enjoyed the visit and enjoyed his prayers with Ron and myself. We are so grateful to our church family ...for their love and support through all of this. We look forward to getting home and being with everyone once again. We did not get a chance to make it to services before I had to bring Ron back to Tucson. So...right now ..Ron's parents are out on a mission looking for Stuart's Lemon Lime Soda and key lime pie ice cream. He is having an echo done right now and will have dialysis later today. The kidney doctor just came by and said with the hemoglobin being low...the internal bleeding and the blood transfusions that he has had to get ....the kidney is still a bit traumatized so it will take some time for it to recover again. They will continue dialysis every day for a few days and then give him a break here and there. Still no word as to the time frame they expect Ron to be here this time. My guess is that it is just day by day right now. They do plan on getting physical therapy in here ASAP to start working with him. His leg muscles are gone once again. You can see his bone along the front of his shins...it is so sad to see. He was really starting to come along with his walking. We are back to square one once again. I apologize for not returning any phone calls yesterday ...I was quite exhausted from all the news we received first thing in the a.m. and speaking with all the doctors early in the day. I did not get to bed until after 1am on Saturday because they did not take him down for his CAT scan until midnight ..I was up by 5:30am yesterday morning when the doctor came in to explain the bleeding to me....then at 6am the surgeons came in..so I was up the rest of the day....I finally started taking cat naps throughout the afternoon and turned my phone off for a while. It was just a lazy day Sunday from 1pm on. Thank you for the prayers....keep them coming. Ron has many more hurdles to still overcome. We are hopeful of the outcome. Praises to our Lord and blessings to you all!

STILL ON THE VENTILATOR

Well...we had hoped Ron would have come off the ventilator yesterday....but too much happened and we had to put it off for another day. We will give it another try today. Yesterday morning they started to slowly bring him out of sedation again...he seemed to be doing really well....he was responding to me by moving his eyes and his head...he was not agitated at all....they had switched his vent to CPAP mode whereby he was actually breathing on his own and the machine would just provide him with some oxygen. He had to go down to have his PIC line repositioned because it was not in all the way due to scar tissue around the veins. He also had to get another CAT scan done of his neck and head...the only part of his body that had not been scanned. Needless to say.....all this activity got him very agitated and exhausted. He put himself into Atrial Fibrillation again and was just in need of sedation. So they had to up the ventilator again and put him back under so that he could rest and we could get his heart back to normal rhythm. He then had dialysis again at 7pm last night ...it ran until 10pm. So they thought it best to wait until today to try bringing the vent down again. He is slowly waking up today. He has been in and out. He tries to stretch his legs and move his arms...but his arms are still retrained.. He does move his head towards the person who is speaking to him which is good. They are setting up the machines to start his dialysis again. It will run for three hours. It looks like they are going to give him some blood. His hematocrit and hemoglobin is very low. We can't seem to figure out why ...he is not bleeding from anywhere. Although they do run labs quite a bit throughout the day...but I don't think it would bring his level down so much. Hopefully, other than dialysis ...he will have a quiet day so that we can wean him off the ventilator successfully and not have any more set backs. It also looks like we may be getting a handle on the fever as well. We will know for sure tonight as this is when he tends to spike the most. I want to take a moment to thank those of you who continually keep us in prayer and who are always sending me good thoughts and special messages of inspiration. I love you all very much and appreciate the love you send to us ...we are so blessed to have you in our lives. Kim....my "lovegod2" friend in Christ...you are so awesome...thank you for the scripture readings ...I so need them.....I left home in a haste to get Ron back down here and forgot my Bible. I am totally lost without it. I keep going online when I have a quiet moment and read my daily readings online. Ron has a board here in his room where the nurses write who he is assigned to for the day and the date...there is a spot where messages can be written and that is where I am going to write down the scripture you sent me so I can stay focused each day! To Margaret....you will forever be my special sister in Christ. When I get home...we are definitely going for that cup of coffee and massage. Thank you for your support even from afar...it helps me more than you know! To our family who helps us each day....Ron's parents who are always there ....my brother in law...sister in law and niece...they have really taken on the role of guardians for Thomas and have been doing a great job with him.....we can't thank you enough! To our family and friends across the miles who continually keep Ron listed in prayer chains ...you are all so awesome and we love and miss you so much! We know that if you could be here with us every day...you would. I continue to stay focused on the Lord and trusting in his Will ....knowing that he can be fully trusted ....Ron is in good hands ....always has been. He will not forsake us ...he will not leave us alone. He surrounds us with his love and mercy through all the wonderful people here that care deeply for Ron and our family. Praises to the Lord....his love endures.

NO CHANGE

Ron is still on the ventilator. He continues to spike fevers in the evenings. We continue to treat with Tylenol and alcohol baths and keeping the room very cold. His blood pressure and heart rate have stayed stable. He had another treatment of plasmapheresis yesterday as well as dialysis. Nothing else has turned up on the cultures done. The vas cath only showed minor grown which they attributed to only skin contamination...nothing that would have caused any further infection or the fevers. At this point it is unknown if the fevers are simply attributed to his body still trying to fight the pneumonia or if there is still something lingering that we are missing. They have talked about doing an ultrasound on his gallbladder because the CAT scan that was done showed that it was a bit enlarged and that there was fluid around it. His liver function does not show any diminishing tendencies which would be a symptom if there were problems with the gall bladder....so it is all still a mystery as to the fever he continues to get. Today, they put a triple lumen pic line so that they can remove the other lines he has in his groin. The pic line can stay in for a longer period of time...provided it does not become infected. It can be used to draw blood and give meds. He is getting dialysis right now. Today he skips plasmapheresis ...he will have another treatment tomorrow and again on Sunday. Yesterday's dialysis treatment removed 6 liters of fluid and the day before they removed 3 liters. He will have another three hour run today. They have started to decrease the amount of sedation he is receiving...so he should slowly start to become a bit more "active" ..hopefully, they will remove the the ventilation today or tonight. Last night he was moving his legs and stretching out his arms from time to time. At one point I awoke around 3am and he had his hand wrapped around his breathing tube. Boy..that was close. We immediately brought it back down and had to put the restraints back on him. You hate to do it..but it is only to keep him from hurting himself. While Ron is more stable today than he was a week ago when I admitted him...he is still in very serious condition. Until they get a full handle on the infections involved Ron is still not out of the woods by any means. Infections and transplant patients do not mix well at all. He is going to have another bronchoscopy today I have just been told. This is where they put a scope down his throat and suction whatever junk is down in he esophagus and the bronchial areas. As we suspected..he is becoming a bit more active with his hands and moving his head in the direction that we speak to him. He opens his eyes a bit and tries to lift his head. It is driving the dialysis nurse crazy because every time he does this it sets off alarms on her machine. But, she is just going to have to make do and relax. I spoke with his nurse a few moments ago...He may not come off the vent until tomorrow. They don't want to remove him from he narcotics too quickly...so it will be a very slow process.

A BUSY DAY FOR RON

Ron's fever finally broker around 4-5am today. His heart rhythm finally converted back to normal rhythm at 6:30am today. His blood pressure was a bit on the low side starting out. His nurse said he was a bit hypotensive most of the night...I am sure it was due to the medication they were giving him to lower his heart rate. It took until mid morning for it to come up to normal range. Once it did...everything stayed stable the rest of the day. He had his new vas catheter put in. He had his plasmapheresis done and his hemodialysis as well. He seemed to tolerate them both very well. He managed to keep his temp down throughout the day. His chest x-rays show improvement everyday. After dialysis tonight...he started having some urine output. Around 8:30pm tonight his temp started creeping up again. I don't know what it is about the evening that causing his temp to start spiking. But, the infectious disease doctors did forewarn us that he would probably still have fever spikes for the next couple of days. He just went down for a CAT scan of his belly and his chest. Hopefully, we can keep his fever to a minimum range ..I really need to get some sleep tonight. I stayed up with his nurse last night trying to get his temp under control until 1:30am...and I was up by 6:30am. Tomorrow they may try to start waking him up out of sedation and see if they can start coming off the ventilator slowly. I will keep you posted. Thank you to all my church family who continue to offer prayer and offer help in any way for us. We love you all so much ....if there are any of you willing to make the drive to Tucson and have a prayer group come together to pray over Ron...it would mean so much...but only if you all have the time to come down. I think it would do him and me a world of good to have people that are a part of our church family here. Ron is at UMC, 4th floor ...#4708...Tucson AZ

Praise to our merciful God....he answers our prayers...he gives us hope!

A FEVERISH DAY AND NIGHT

Dr. Smith finally stopped by this afternoon. She ok'd giving Ron Tylenol for his temp. They decided since he was still spiking fevers we would need to pull the vas cath they use for his dialysis and plasmapheresis...their concern is that the line was infected. It will be sent for culture. They will put a new line in him tomorrow so that dialysis and plasmapheresis can resume. They put him back on an Amiodorone drip to help with the atrial fibrillation and tacacardia that he continues to have intermittently. His blood pressure seems to be doing ok. If we could just get the fever down. He came close ot 103 degrees again tonight. They were suppose to send someone from the pacer clinic to check his pace maker too...but we never saw anyone today. His night nurse and I gave him an alcohol bath with very cold water and ice packs to see if we could help him break this fever. We just don't know what else to do. The Tylenol does not seem to be working. They are hesitant to use Motrin because it is very hard on the kidney's. I put an ice pack on his head and under his arms, in his groin areas ...anything we could do to get the fever down...we tried. Hopefully, sometime during the night ..it will break. The chaplain came by and prayed for Ron and the family...for healing..peace...strength and His presence here with us.

ANOTHER INFECTION

Ron has just been diagnosed with another infection...it is referred to as VRE.... it is basically a staph infection that is resistant to Vancomycin....Vancomycin Resistant Ecococci.... In reading about this infection it is one that patients who have been in the hospital awhile are prone to getting it...especially patients who are immunosuppressed..such as Ron ...it is a bacteria that can stay dormant for some time. It is now the hospital's policy to swab every patient that comes in the hospital for various staph infections. They tell me Ron probably came in with it...but my guess is...because he was in the hospital for so long before...he contacted it here prior to leaving two and half weeks ago. I don't believe they were testing patients back in December when we arrived. I don't believe it started until the first of the year. Just one more thing he has to deal with. His heart rate has increased quite a bit in the last couple of hours ...going as high as 150bpm. He is in and out of irregular rhythm and tachy. They suspect the antibody rejection is causing this....we are still waiting for the red cross to arrive to start his plasmapheresis. I have been pushing for the doctors to up his beta blocker dose for now...but I can't seem to get anyone to agree with me...they are worried that it will drop his blood pressure...and Dr. Smith is not in the hospital right now. She was suppose to be here ten minutes ago 20 minutes ago. The Red Cross has just arrived to do his plasmapheresis...it will run about 2 hours. His temp has gone up again to 39 ...which is just under 103. I hope they give him something soon...he cannot continue with a temp like this much longer. The nurse is just as frustrated because she cannot do anything without a doctor's order. Will keep you posted.

STILL FIGHTING

Ron managed to get through the weekend fighting the whole way. He is still spiking fevers at night even with the dialysis machine..usually people's temps drop when on dialysis....but his fevers are getting so high ..it does not affect him. He is on two antibiotics to fight the pneumonia at this point. He is still have atrial fibs ....but mostly flutters now. His heart is trying to convert back to normal rhythm but is not quite there. They removed the swan line today and a different type line was put in it's place so that the nurses can have access to giving meds. They are going to try and bring him out of sedation today and try to start tapering off the ventilator. They are going to start him on plasmapheresis today as well and continue with dialysis. The blood in his urine has subsided ..it is still a dark color but seems to be improving a bit. The pneumonia seems to be the only infection we are fighting at this point...and that is enough... We can only hope and pray now that he will continue to fight it and kick it hard. I heard from some of the staff here at the hospital that a lot of patients have come in with pneumonia. One woman in her 80's next door to Ron did not make it...she passed yesterday. Keep praying.

SEVERE PNEUMONIA

It appears that all the other cultures have come back negative so what we are dealing with is severe pneumonia. Dr. Smith said she has not seen this strain of pneumonia in a long time. But on the upside....his cardiac numbers look really good for someone who has chronic antibody rejection. They are going to go in and put a scope down his esophagus and try to pull more "junk" out of his lungs. His chest x-ray looked a little bit better today. He did still run a fever overnight but his blood pressure and heart rate stayed normal. They will probably start him on plasmapheresis tomorrow for his chronic antibody rejection...something he is going to battle from here on out. He is still on the ventilator. They want to pull a bit more fluid off of him and clear out the lungs as much as possible before they take him off of it. They are going to put a feeding tube in him today to start giving him some nourishment. He is still getting dialysis. He started to develop blood in his urine yesterday ....unknown as to why. I finally had them do an ultrasound to see where this is coming from. I am waiting for renal to review it and see what is going on. I am really concerned about it. He still has been running a fever of 100 and pretty well sedated. Please keep the prayers coming. He really needs them. Blessings....

HEART AND KIDNEY STATUS

Ron's blood pressure stayed a bit elevated overnight. They started him on dialysis once again ...his kidney function became a bit sluggish yesterday so that decided to start the dialysis rather than wait for anything to get worse. He was doing fine this morning with the exception of his blood pressure...which had me a bit concerned. I had questioned if he had been put back on his beta blocker...and he had not. I went down to grab some breakfast in the cafeteria...when I returned ...he was in atrial fibrillation again...his heart rate was as high as 147 bpm. His blood pressure was still elevated at the time. Dr. Copeland was on the floor...so we had him assess the situation. He was fine with the nurse putting him back on the beta blocker he was on. His blood pressure is back to normal range but his heart rate is still elevated...it may take some time to get him out of atrial fibrillation. He was in it for two days earlier this week. Until they know for sure that he is in rejection of any kind ..they will not increase his anti-rejection meds...because if he is septic...this would only cause more harm than good. We had hoped to bring him off the ventilator today but now we need to wait to get his heart rate under control and the doctors want to try and remove more fluid off of him. The cultures for the pneumonia did show negative results for fungus..which is a very good thing. They put him on a new antibiotic for the pnuemonia...naphacyllin....I don't know much about this antibiotic. The blood cultures are still coming back negative ..which is a good thing. I am still hopeful the only thing we are battling right now is the pneumonia. I hope we can get his heart rhythm back to normal and that his kidney function will bounce back quickly with no signs of rejection.

BACK IN THE HOSPITAL

I am sorry to say I had to bring Ron back to the hospital Thursday afternoon.
He started feeling very poorly at around 4am...coughing non-stop and developing a very loud wheeze in his chest every time he would breath. He was having a hard time breathing and then had bouts of nausea followed by vomiting and fever.
I was able to get in touch with his surgeon around 11am and she immediately advised me to bring him back in because she was concerned that he was on fluid overload and possibly in rejection.
We arrived to the ER here at UMC at 3:30pm...they took him back right away and started working on him immediately. They confirmed that he was in congestive heart failure and had an infection somewhere as he had a fever of 103.
They immediately put him on IV drips with lasix..steroids..and antibiotics ...they started running blood cultures because they suspected that he was septic as well.
Within the hour he was up in a room in the ICU...they started hooking him up to machines and trying to get various lines in him.
His veins are so shot that they had to put lines in his groin area because nothing else could be found.
They put him back on the ventilator so as not to run into complications during the course of the night ...he had a very low blood pressure when we brought him up to the ICU.

This morning they confirmed that he has pneumonia. His CAT scan showed a large amount of fluid in the left lung and quite a bit of infection in the right lung.
They tapped the left side of his chest ...to the side of the rib cage and drained 1300cc's of fluid..which amounted to a liter and a half.
They have sent some of the fluid for culture to see what type of infection we are dealing with and start him on the appropriate antibiotic.
We are hoping this is the culprit to all the problems he is having right now and that nothing further will come back positive.
His kidney function has slowed down due to the sepsis...so they are planning to start dialysis later today.
So far the preliminary blood cultures have come back with "no growth"...we will know more in a few days.
They have managed to keep him stable. His blood pressure is doing well..his respiration is better...and his temp is back to normal.

The goal now is to pinpoint the infection(s) and treat accordingly.
Make sure there is no rejection ..and if so...treat as needed.
The ICU nurses have been wonderful and it is comforting to have Dr. Smith back on his case calling the shots and overseeing his treatment.

Please keep Ron in prayer ...we hope this will be resolved quickly and that his stay here will be a short one.

HOME SWEET HOME

Praise God.....We are home!



Ron was finally discharged from the hospital on Thursday at 8pm in the evening. It was a very long day!

He did not receive his retuxamab infusion until 4pm that day ..it had to run three hours....thus the delay in getting home.

There were still a lot of other loose ends that had not been taken care of until that day ...so further delays....

But.....we are home now and that is all that matters.

Ron says if he has to feel bad or uncomfortable...he would prefer to do it in the comforts of home rather than in the hospital.

We did not arrive home until 11pm ....as you can imagine ...we were quite exhausted.

Fortunately, his family had arrived to the house early....stripped the beds and put fresh sheets on for us....that made things great for the night.

Thomas was waiting up for us, too. Life could not have been better at that moment to see him and hold him in our arms.

It was so nice to put him to bed and read a bedtime story just like so many times before.

We were all home..once again.



The weekend was quite busy and hectic...had a lot of cleaning up to do around here. We still had Christmas decorations to put away and crafts I had started to work on for the holiday season. I am still trying to unpack suitcases.



I have also been busy with phone calls to the insurance company trying to iron out some issues still pending....coordinating home health care and physical therapy. Waiting on Ron's medical supplies to be delivered for his wound care and for his bathroom needs....nothing arrived over the weekend. The wound care supplies finally were delivered yesterday. It was a good thing the wound care nurse at the hospital sent me home with several days worth of supplies to hold me over. His bathroom equipment has not yet arrived. I finally received a call today from the medical supply store....they had not delivered anything because they do not think the insurance company will cover it...I explained it is a medical necessity for Ron...I asked them to deliver it and I will deal with the insurance company later. But, they cannot deliver until tomorrow and I have to take Ron back to Tucson tomorrow for his Retuxamab infusion....they will not deliver is no one is home because I have to sign a document that states I am responsible if the insurance does not cover the items. So, I will just go down there myself and pick the items up...Ron will finally be able to take a nice bath and use a regular toilet for a change!



Several doctors appointments were scheduled this week, too. He saw his cardiologist yesterday and had an EKG done. He is scheduled for an echo on Friday. He will be getting them done every week. He has to go to Tucson tomorrow for his IV infusion. Hopefully, they will get him set up at a facility here for next week...which will be his last infusion.

Next Tuesday ...he will need to follow up with his cardiologist to review the echo he is going to have done on Friday.

I still have to call the renal doctors and kidney tranpslant doctors to see when they want to see him again. Unfortunately, they do not have a clinic here for Ron to see them at so we have to travel back to Tucson for the appointments. I believe they want to see him two weeks post discharge. I will find out more today.



I am scheduled to go back to work next week...the 14th. The home health care nurse will be coming to see Ron Mon-Fri....she will take care of his wound care in the morning and draw his labs as needed. This will leave me only taking care of the wound in the evenings.

His Physical Therapist will be coming three days a week to work with him.

Our project the rest of the week and weekend is to organize things in locations that Ron can reach them at...meds...food items in the refrigerator ...his clothes...etc.

He can walk some ...with his walker...around the house ...but for the most part he gets around in his wheelchair or his scooter.



It will be a bit scary leaving him for the first time next week....but I know he will be in the Lord's hands and all will go well.



I apologize for the delay in getting this blog out....I just had not had time to get the laptop hooked back up or a few minutes to spare these last few days.

All in all...it has been crazy.....but we are home!!!!!!!!!



All the Glory to God for getting us back home safe and continuing to help Ron's body heal.

TREATMENT UPDATE

Ron had his first round of photopheresis on Monday and today. He seems to have tolerated it well. Basically ...the way photopheresis works ..a machine pulls Ron's blood out just as it did when he was on dialysis but at a much slower rate...the process separates out some of the white blood cells from the rest of the blood and exposes them to ultraviolet light after adding a drug called UVADEX...when exposed to UVA light..the drug becomes activated..which then destroys white blood cells. One theory of this process is that when the treated white cells are returned to the body ...the immune system senses a difference and the body works to eliminate these cells and others like them.
The first 4 weeks he has to have the treatment 2 times a week....thereafter it is then done 2 times a week every other week for 2 months....and finally 2 times a week once a month for 3 months....a much longer process than what we were initially told.
There are two facilities in Phoenix that provide this treatment...I am hoping we can get Ron set up with one of them.
He has to be very careful with sunlight 24 hours after each treatment..even indoors...the window blinds cannot be fully opened....and bright lights need to be kept at a minimum. ...because he will be exposed to a small amount of UVADEX when the white blood cells are returned to his body...this will make his skin much more sensitive to sunlight.
Once we begin outpatient therapy ...he will have to wear long sleeves ..special glasses that wrap around to provide UVA light protection. He also needs to use sun block to any exposed skin.

I am pushing to have Ron released on Thursday....well, I should say...I am telling everyone that I am taking him home on Thursday. All the treatment he is receiving up to this point are things he can do on an outpatient basis...so I just don't see the need to continue here in the hospital. Going home, I believe is going to be amazing therapy for him in and of itself.
So, I basically told every one to start getting things in order...coordinated and in place so that all is ready when we leave.

He gets another treatment of Retuxamab on Thursday...I will make sure that it is ordered early enough so that we are done at a reasonable time. It takes three hours for the infusion to complete.
I turned in the keys to the apartment on Monday and my car is loaded down. Tomorrow I will begin to start packing more things that we have accumulated in the past four months here in Ron's room...so that I don't have too much to do on Thursday.
I met with the social worker today and went over things we need to have in place once we get home....home health care, physical therapy, a facility for him to receive his chemo infusion via IV...and a facility to receive his photopheresis...etc....

They have made some new changes to his pain medications...hopefully, it will work out for him.
He has a lot of pain during the wound care dressing changes and his chronic back pain...(which I do not want to become an issue now that we finally have him walking...I don't want this to slow down his progress. He was not too happy to hear of the changes...but we will give it a chance and hope for the best.

Tomorrow will be a quite day considering everything he had the past two days. It will give me a chance to pack things up.

He also had an echo on Monday ....we were told that all looked very good. His ejection fraction is staying in the 55-60% range...and his d cell function showed some slight improvement.

I have yet to speak with any of the CT surgeons as to my decision to take him home. I have only spoken to their PA and to their nurse practitioner...my guess is I will eventually see one of them before we leave.
I did speak with the kidney surgeon and he did not seem to have a problem with it. He said to continue with what I am doing with the wound care...he felt the wound looked very good and the tissue is very healthy and clean.

We are so ready to hit the road and be Phoenix/Goodyear Bound......Praise God!!!!!


How amazing are the deeds of the Lord! All who delight in him should ponder them. Everything he does reveals his glory and majesty. His righteousness never fails. He causes us to remember his wonderful works. How gracious and merciful is our Lord! Psalm 111:2-4

END OF THE WEEK UPDATE

Ron did well with his Rituxamab treatment. He was a bit nauseous this morning so he had asome ginger ale...he was fine quickly thereafter. We did not see any doctors until 5:30pm today. Dr. Copeland came by and advise that they will continue with the Rituxamab treatment once a week for a total of four weeks. He also stated that he would NOT have to stay in the hospital for all the treatments....we were happy to hear this. He also said they will start him on the photopheresis treatment possibly on Monday...and also stated that he will NOT have to stay in the hospital for this either. These are treatments that we can do from home with either home health or outpatient services. He also stated that the kidney surgeon will not be keeping the surgery date to close the wound. Right now ..it is best to focus on the antibody rejection first and foremost ...the Rituxamab will wipe out a great deal of his white cells ...so cutting into his wound would not be a good idea right now. I just realized as I am typing this that no one mentioned to us the biopsy results for the cellular rejection which should have been in at 2pm. I also forgot to ask. Well...Dr. Copeland said he will be on duty this weekend...I will try to ask him when we see him again. So...my guess is we will start on the photopheresis and then...hopefully, start making plans to get Ron home and getting treatments and physical therapy in order so that things are in place when we leave. I continue to tell myself the same thing..."maybe sometime next week"! The Lord willing...it will happen. Ron walked more today, too. He walked three times today ...once with Rob from the wellness center ...once with the physical therapist ...He walked over 90 feet with the therapist...his longest so far. He did a short walk later in the day with me and his nurse. He is definitely making progress with the physical therapy...they have signed off on him today and left instructions with his nurses that he is to be walked 2-3 times a day going forward until he is discharged. There needs to be two people at all time. One to help him from a sitting position to standing...and to lightly support him as he walks using his walker...and then someone to push the wheel chair very close behind him should his legs give out on him. Thomas is home sick with his grandparents. We fear it may be the flu. He has been running fever and vomiting ...he had a short bout of diarrhea...but that seems to have subsided. He is on clear liquids for now. It just kills me not to be there for him ....we usually cuddle up together on the couch when he is not feeling well. I just know he hates that I am not there, too. I almost cancelled his appointment today with the ENT to get his ears checked on Tuesday because we thought Ron was going to have surgery...but now that the surgery has been cancelled...I will go ahead and keep the appointment ...of course this is all depending if he gets to feeling better. If not...I may still need to reschedule it. Our lease is up on the apartment on Monday. I do hope they let Ron out of here real soon. I did not want to renew another lease...because the minimum time is 3 months...and I know we will not be here that much longer. So...I will make the best of it until he is discharged. We continue to keep positive thoughts ....there is a glimmer of hope on the horizon....soon...very soon .....we will be home at last! Should anything come up over the weekend....I will update the blog ....but my guess is nothing further is going to be done until Monday. Have a great and blessed weekend........ And the holy spirit helps us in our weakness. For example, we don't know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the Spirit is saying, for the spirit pleads for us believers in harmony with God's own will. And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. Romans 8:26-28

TREATMENT BEGINS

Ron had his right heart cath and biopsy at around 2:30pm.
He was back in his room by 4:15pm....just in time for dinner..his first meal of the day.
All went well for the most part.
Around 6pm...Dr. Copeland came by ..he took a look at his cardiac pressures ...and determined it was best to start the retuxamab tonight....this is the IV chemo drug ...he said given the numbers he was seeing from the right heart cath...there is some heart failure taking place due to possible rejection. As for the biopsies themselves...we will not get the first results on cellular rejection until tomorrow afternoon....we will not receive the antibody rejection results until 48 hours.

They just started the treatment 5 minutes ago. It took forever to get someone in to start a new IV line....protocol for this drug is that he have a new IV line that is no more than 24hours old. Ron is such a hard stick now because all his veins are shot at this point...so they usually have to find a nurse who is extremely good at getting IV's ...so it takes a while to find someone around here.
Fortunately, the charge nurse tonight was very good and was able to get one in on the first try.
He then has to receive various medications prior to receiving the chemo drug...benadryl..tylenol and a steroid. Then the Chemo nurse has to come up from oncology to start the IV...lots of policy and protocol to follow. The IV will need to run for three to four hours.
We still need to do his dressing change...but he is so out of it with the benadryl ..we do not want to start the dressing change just yet...because he needs to have pain meds while we clean the wound ....we are going to wait a half hour to see if he comes out of it a bit.

No one came by to discuss the photopheresis today so I don't know when they plan to start this.
It has been a long day .....I am once again finding my patience running thin and not in such a great mood. I hope they caught this early and it will not set him back further to where he cannot go home soon.

The hospital chaplain came by tonight...Dave....he comes by to see us every night that he is on shift. He has been great for me. He is so good at keeping me focused and of course Ron's sense of humor..which he has always managed to keep...keeps me laughing at just the moment I need to. Tonight, for instance, Dave could see it on my face and here it in my voice how disappointed I was of the news we received today. He could see my spirits were down and so he took the time to pray over Ron and for me and the family. I was a bit emotional through it all and Ron was quite "goofy" because of the Benadryl....he started saying some quirky stuff and just made me laugh so hard...he had Dave laughing too....I told him that it was just what I needed.

My hope is that all this was caught very early and things will stabilize for Ron very quickly.
Other than the test results the doctors are receiving...Ron really has not felt bad or had any symptoms to indicate he was having any rejection. Other than the atrial fibrillation...there have been no other indications...and this may have been caused by the pacemaker itself....from what the pacemaker tech told me today...but this has not been confirmed.

So...now ...we just allow the treatments to take place and hope for positive results.

His wound looked better this morning...the skin that was red and inflamed last night looked much better this morning. We believe it was just irritated last night from the dressing change and then the doctors coming in and poking around in it ...and then having to repack the dressing ...it all just did a number on his skin and tissue. Fortunately, it looked better this morning. I hope it still looks good tonight...we will see later.


Give thanks to the Lord and proclaim his greatness. Let the whole world know what he has done. Tell everyone about his wonderful deeds. Search for the Lord and for his strength; continually seek him. Remember the wonders he has performed, his miracles, and the rulings he has given. 1 Chronicles 15.:8-12

ANOTHER HURDLE

Ron had his catheter placed yesterday morning. They took him down around 8am and he was back in his room by 12 noon. Fortunately it was an early procedure and he was able to get back up to have lunch. He was pretty hungry by the time they brought him back up. This morning he woke up very sore in the area the catheter was placed...all the numbing medication had worn off....he was hurting quite a bit. They gave him some extra dilaudid...which seemed to help. Last night around 9pm...he started going into atrial fibrillation again....his heart rate kept going into the 118's ...they started him on amiodorone again via IV and then started him on oral medication of the same drug until they can verify if he is in cellular rejection. They have him on the schedule today to go down for another biopsy before they start him on the photopherisis treatments for the antibody rejection. We have some one in from the pacemake clinic running tests on his pacemaker right now. He seems to think that the atrial line is not capturing...thus possibly showing a false reading of atrial fibrillation. He brought a cardiologist in to review the reports printed to confirm this ...so at this point we are not sure what the outcome is as of yet. The kidney surgeon came in yesterday evening and took a look at the wound again...he still is not crazy about closing the wound but he went ahead and scheduled him for surgery on Tuesday tentatively...he will be back on Monday to check the wound one more time and determine if he wants to go in and close him up. Ron is still very uncomfortable once his dressing change is done...the wound throbs all the time and it is very tender when we clean out the tunnels and the large area of the wound ...even with heavy duty pain meds on board. This would be the main reason Dr. Gruesner would consider closing him up. Either way...whether we leave the wound open or close it...he still has a 50/50 chance of infection....Ron wants to close it and see how it goes. So, hopefully, on Tuesday this will happen. We had hoped for this week....but it is not up to us. I will let you all know what the turn out is with the pacemaker and possible biopsy today. He walked again today with his walker and me following close behind with the wheel chair the full length of the short hallway and back again into his room without taking a break....they said it was a total of 84 feet.....pretty awesome. The therapist said they will try to work on small squats next to get some more strength in the knees and thighs.

STILL WAITING.......

Ron is scheduled to have his catheter placed tomorrow. We had hoped on it being done today...but there were a few serious cases that came up so he should have it done tomorrow.
The surgeon who needs to take a look at his wound came by today while we were down in the cafeteria...he said he would just come by again tomorrow...but of course...we are never given a time ....so if he happens to come when Ron is having his procedure done...I don't know if it will get pushed to another day.
We still have not seen the plastic surgeon that Dr. Smith also wanted to have a look at the wound .

Ron did some more walking today. Physical therapy came by and walked him out in the hall.
He walked using the walker and I pushed his wheelchair behind him. He walked down the full length of a short hallway ...turned around and walked back half way before he had to sit and take a break. He then finished the rest of the way back to the doorway of his room. He did really well today. The physical therapist is very pleased with his progress.
I can now help him stand from a sitting position on the bed and support him as he shuffles over to sit in his wheelchair.
As well as he is progressing...if I could just get him to a rehab facility ...he would be back to full strength in no time.
We just need to get the wound issue taken care of once and for all and get him started on his photopheresis treatment and we can be home free.

Easter Sunday went well for us. We enjoyed our time with Thomas and the family.
Thomas enjoyed his Easter bag of goodies....books and puzzles and a few treats.
He received the book about the story of Easter. I look forward to reading it to him for years to come.

God arms me with strength, and he makes my way perfect. Psalm 18:32