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.