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

HAPPY EASTER

It is Saturday night...just now having the opportunity and the energy to blog and get everyone caught up on things. We are obviously spending Easter here in the hospital. Ron's family and Thomas made it down early Friday afternoon to spend the weekend with us.

We ordered a ham and turkey from Honey Baked Ham Co....we will have our Easter meal down in the cafeteria. Thomas spent the night here with us last night. He seems to be in better spirits.


So the run down on Ron .....The final biopsy results for the antibody rejection did show some evidence of underlying rejection...so Dr. Copeland has suggested to the team to begin a new treatment called Photopheresis...similar to plasmapheresis but this process is pulling the blood out and exposing it to ultraviolet light....it weakens the white blood cells to keep the antibody rejection at bay. It will require them placing another tunnel catheter into Ron so that this can be done on a regular basis. The treatment is a 3 month treatment done over several times a week.

He does not have to stay in the hospital to have this done. This process is mainly used on patients who have cancer in the blood. They have never used it on transplant patients here.

They are also planning to give him the retuxamab IV intermittently as well as preventative measures for antibody rejection, too. This is the drug that was given to him after he went into cardiac arrest and was on ECMO for 5 days.

They hope to get the catheter in by Tuesday and begin the treatment by Wed or Thursday.

As for the issue with his edema....they started him back on IV lasix as of yesterday ....he was extremely huge on Thursday ...he was miserable all day as well as today. He had quite a bit of output ...his thighs and legs were not as stiff today but his torso still is quite enlarged. They also plan to start him on another diuretic to help with the edema.


His overall heart function is good. His ejection fraction is staying in the 55-60% range. It is the area that was showing some stiffening to the heart that was of concern ...but now that we know that there was some underlying rejection...this may be the cause. Hopefully, once they start the blood treatment this will improve.

As for the kidney wound.....Thursday afternoon the abdominal transplant team finally showed up. The surgeon looked at the wound and did not want to cut into Ron to do any draining ...he is still recommending we just go in and clean out the tunnels and close the wound up. However, the chief of surgery who did the kidney transplant did not recommend this...so that day ...my head was spinning because I just did not know who to believe or whose opinion was the better to go with. Needless to say...nothing ended up getting done that day and I was quite frustrated.

Fortunately, Dr. Smith returned from maternity leave this week. We finally saw her on Thursday and told her everything that had happened that day and things that just aren't getting done.

She brought up the wound in their Friday morning conference and everyone was in agreement that something needed to be done with the wound ASAP.

She spoke with the surgeon on the kidney transplant team who wants to close the wound...however, she now needs to sit down with the head surgeon of the kidney transplant team to see if they can come to some sort of resolution as to the best way to approach this.

She came by Friday late morning while we were getting ready to do Ron's dressing change so she could look at it. Once she saw it ..she could understand why the head surgeon is reluctant to just close it up. She was very impressed on how well the base of the wound is healing...but she still feels that the 6 tunnels that have developed are going to be very hard to keep clean and we will always be battling infections. She has a plastic surgeon that she is very comfortable with and will have him come by on Monday, hopefully, to take a look at the wound and give his suggestions on the best way to close it up. She will meet with the head kidney transplant surgeon and come up with a plan ...one way or another this will be resolved next week.

We are extremely happy that Dr. Smith is back....we are confident she is going to make things happen in a timely manner so that I can get Ron home. We both expressed to her that we just want decisions to be made and plans to get executed ....too much time has passed and we don't feel things were being taken care of as well as they should have.

She came by today ....made some more adjustments to Ron's pain meds to keep him more comfortable and just reiterated the plans for the week.

I had thought the worst case scenario would keep us here until mid March..but it now looks like we will be going into the early weeks of April. I can only hope it will not be any longer than this.

It is definitely starting to weigh on Ron's emotions. Thursday was a very "blue" day for him...this is the first time since this all began that he was so down. It is so hard to see him this way because it just isn't in his nature. He is always so upbeat and so positive. But, Thursday was a tough day for him. Friday was too...but not as bad once the family arrived.

He was in better spirits today...his sense of humor was definitely back and we had a good day today.

My patience, however, has been running very thin...I try to control myself as best as I can...but it has all really caught up with me too....I am hanging by threads some days physically and emotionally....I am very tired of being here and just want to get on with life outside the confines of this hospital.

We look forward to spending Easter tomorrow with the family even if it does have to be here.

In spite of the challenges we face...it is important not to forget the reason for the Easter celebration. We were given an amazing gift from our Lord and Saviour. He paid the ultimate price for our sins ..so that we may have everlasting life.

With that said....any challenges we face are bearable because the Lord is always there and the life we will have long after this one is all well worth it!


HAPPY EASTER EVERYONE!!!!!



MANY BLESSINGS TO YOU ALL...........

Jesus came and told his disciples, "I have been given all authority in heaven and on earth. Therefore, go and make disciples of all the nations, baptizing them in the name of the Father and the Son and the Holy Spirit. Teach these new disciples to obey all the commands I have given you. And be sure of this: I am with you always, even to the end of the age."
Matthew 28: 18-20

SOME RESULTS GIVEN

Another long day waiting to get some news and waiting on doctors. The abdominal transplant team never made it by to work on Ron's kidney wound....they were stuck in the O.R. most of the day. The cardiac transplant team did come by around 4pm ....they advised that Ron's biopsy for cell rejection came back negative...really good news to hear. We should receive the results on the antibody rejection tomorrow...this one takes an extra day. As for his echo...they had not looked at it yet. Hopefully, they can give us some information on it tomorrow. We are also hoping that the abdominal transplant team comes by to work on his wound. Dr. Copeland made the comment this evening that we still have a lot of loose ends to work out before Ron can leave. There is the issue of the wound...his kidney function ( which I thought was getting better) and his edema...his legs were very enlarged today. The edema seems to go back and forth...some days his legs stay relatively normal size and then on other days....like today....they just fill up with fluid to the extreme. His urine output continues to stay over 1000cc's...sometimes close to 2000cc's....so I hope the edema is just a result of not being fully mobil at this point. So....from the looks of things...we may be spending Easter here after all.....I hope to have more of a confirmation on things tomorrow.

We are very anxious to get home but we also want to make sure once we leave here....we don't have to turn around and come back ....I want to feel confident that when he is discharged ..he is perfectly stable to go home.

Ron finally had his biopsy done around 3pm. He was back in his room by 4pm. All went well...now we just wait on the results. He had his echo done around 5:30pm. It was a long day for him. He finally ate at around 6:30pm ....he was so hungry ...poor guy. The resident from the abdominal transplant team came by before Ron went down for his biopsy. They will try to go in through one of the tunnels in his wound ..where the fluid has collected and try to drain it ...they will do this at the bedside. They wanted to do it today but I did not think he would be up to it after his biopsy. So, it will probably take place sometime tomorrow afternoon...as they will be in surgery most of the morning. Hopefully, this will go well and not create any further problems for Ron and the wound. I will sing to the Lord as long as I live. I will praise my God to my last breath! May all my thoughts be pleasing to him, for I rejoice in the Lord. Psalm 104: 33-34

SIT AND WAIT

It is Monday ...almost noontime here in Tucson.... Ron still waits to get his echo done as well as his heart cath. We were told early this morning that the echo lab was very busy...unknown as to when they will get to him. We were told by the cath lab that he was scheduled for early afternoon....so we continue to wait for this as well. We were able to get his dressing change of his wound early...thank goodness for that at least. It is looking a little bit better. He still has a bit of swelling along one side of his skin ...but not as red as it has been....I hope this is a good sign. We have not seen any doctors this morning ...so unknown what their thought is on whether or not they plan to drain the area along side the wound or continue to keep doing what we are doing with the antibiotic. Ron has slept a lot this morning...he says he is hungry so in order to keep his mind off food ..he would rather sleep. He cannot eat or drink anything until after his heart cath. I tried to get him to exercise this morning to keep him occupied but his side is very sore and he just was not up to it.....maybe later. Please keep praying that everything goes well this week and hopefully I can get him home before week's end....it would be so nice to spend Easter at home instead of here. Thomas is scheduled to see the ENT tomorrow for his ears...but given that I have not received much information today...I am leaning towards cancelling his appointment and rescheduling...I am not comfortable leaving here for the day tomorrow with things so up in the air. I don't know how much information I will have later ...because these procedures are being done so late in the day...I know results will not be available until tomorrow. The cellular biopsy results will not be available until tomorrow after 2pm and the antibody biopsy usually takes 48 hours to receive anything...and his echo will more than likely not be looked at until sometime tomorrow as well. Several heart transplants were done over the weekend so the team has been very busy. For all I know ...I may not even see anyone until tomorrow. But ....I will keep everyone posted. HAPPY ST. PATRICK'S DAY!!!!!

A NEW WEEK BEGINS

It is Sunday afternoon.....we are both feeling a little sluggish today....I don't know if it is just the fact that it is a bit overcast today...looks like it wants to rain or we need more sleep. Ron's CAT scan came back showing some fluid build up in his abdomen near his wound site. We have to wait Monday morning to see how the doctors want to proceed ...if they want to go in and drain the area .... They have decreased some of his Lasix IV...he had really good output the last few days. Some additional adjustments have been made to his pain medication to see if it helps control and /or manage his pain better. The infection has caused him to have much more ongoing pain around his wound site. He continues to have his chronic back pain as well. Tomorrow will be a very busy day with his echo...his heart cath biopsy and his pacemaker check up...and possibly draining of the fluid build up. I will try to update the blog tomorrow as soon as things are completed. Today is the beginning of Holy Week.....let us remember to take a moment to reflect the amazing gift our Lord gave us.....the gift of everlasting life...and the forgiveness of our sins....his death for our life ......we are so blessed to have such a loving God! "For God loved the world so much that he gave his one and only Son, so that everyone who believes in him will not perish but have eternal life. God sent his Son into the world not to judge the world, but to save the world through him." John 3:16-17

THE END OF A BUSY WEEK

Ron's echo was reviewed this week. His ejection fraction is still looking good but there are some other areas of concern that the doctors are monitoring. There seems to be a progression of some stiffening around the heart...unknown if this is rejection setting in or something else.

They plan to do another echo on Monday and they are also going to do another heart cath biopsy. He has not had any more atrial fibrillation episodes...but his rhythm still on occasion is doing some weird stuff.

They plan to have the pacemaker looked at again and see if any further adjustments need to be made.

The infection in his wound is still an issue. There is still some inflammation along the side of the wound. We tried getting an ultrasound today to see if there was anything going on further in the area that we cannot see. The ultrasound could not pick up anything and they suggested a CAT scan. But, given Ron's situation with the kidney ...it will have to be done without contrast. Hopefully, if there is something there ...it can still be viewed without it. He continues to receive the vancomycin on IV once a day.

His creatinin is going back up... today to1.9.....not sure what is going on now.
One doctor seems to think that it could be result of his Prograf level dropping below double digits. It seems as though when he is in double digits the creatinin seems to stay at normal range....not sure how much truth there is to this ....it could just be coincidence....but nonetheless...they increased his dosage a bit on the Prograf. It seems that the Cardiac team prefers his level under 10 and the renal team likes it at 10 or better. Hopefully, they can all find a happy medium and things can get a bit more stable in this area.

Ron is back on the IV lasix until Monday....still trying to get ahead on the fluid issue. They want to see him putting out more urine vs his fluid intake.

They are also starting him back up on Cytoxin ...his white cell count is up over 6 now. I was happy to hear this today as I have been very nervous with him off of it for so long. This is his chemo drug which helps with the b-cell rejection that he is so prone to.

Until we know more on his echo, biopsy and now CAT scan....it is unknown when I will be able to take him home.

I had hoped on Wed. or Thurs. of next week....but it looks as though it may not be until the following week.


On the physical therapy side of things...Ron made some big strides yesterday. He walked about 15 steps yesterday with the help of Rob from the wellness center. I will posts pictures as soon as I transfer them to a CD. I don't have my adaptor to connect my camera to the computer or I would have downloaded them today for you to see.

He first started with standing Ron up in his room and then having him shuffle his feet to the recliner. Then he stood him up again and they walked a few steps as Rob guided him in the room... four steps to start.

The recliner has wheels ...so I suggested that we wheel Ron out to the hallway to give him more room. Rob thought it was a great idea and had someone push the recliner behind him in the event he needed to sit right away.

So, that is what we did ....Ron said it felt great....tiring but it felt really good and a bit strange to be walking again.

He would take a few steps ...stop and take a breather...then start again. He walked all the way back into his room. He was quite exhausted but felt that he had crossed a very big hurdle.

Given that he was able to walk with assistance....we were now able to get the Physical Therapy department to send someone back in today to start working with him again...as he has crossed another level of therapy that they should be able to work with him on.

The PT person came by this morning...she brought a walker with her and we were able to stand Ron up from the bed and have him hold on to the walker for support. I also held on to him as well as she placed a security belt around him. We made sure he was first comfortable standing with the use of the walker and once we sat and stood a few times we then gave it a try for him to take a few steps using the walker. He said it felt strange using the walker as he has never used one before. We then sat him in his wheel chair and we helped him stand from there also using the walker ....he took about 8 steps supporting himself with the walker ....the PT person was very impressed with his progress. They will start coming in again to work with him but...of course...she could not guarantee it would be every day. They will try to coordinate with Rob what days to come so that they are not coming at the same time ....if they can alternate days ...this will give Ron more "walking time" each day.

"I know the Lord is always with me. I will not be shaken, for he is right beside me." Psalm 16:8

SOME IMPROVEMENTS

The vancomycin seems to be working on the infection. The tissue is looking very healthy and pink once again. The outer skin is still a bit inflamed with some redness...but it is showing signs of diminishing. Ron's creatinine is back to normal range of 1.5.....very excited to hear this today. His white cell count is at 2.9...also much improved. I really hope to get him back on the cytoxin drug as soon as possible. He had his echo today. Hope to get results on it tomorrow. Still waiting on the final approval from the chief of surgery ..who did Ron's kidney transplant ....to go in and close up the wound once and for all. Ron had a bout of atrial fibrillation yesterday evening. Not quite sure what caused it...but they ran a quick IV of amiodorone to help bring his rhythm back to normal ....it worked. Today they had someone come down from the pacemaker clinic to run a series of test on his pacemaker to make sure there were no malfunctions. They did make some adjustments to it so that now he is atrial and ventricular paced....they said this should help Ron feel much better...he will have much better heart rhythms and much better profusion. My feeling is that once they decide to go in and take care of his wound....make sure he is stable...I will make immediate plans to take him home. I pray for stability so that I can get to this point as quickly as possible. Many thanks to you all who are constantly lifting us in prayer ...for all the words of encouragement you send our way and for the wonderful selections of scripture that help to keep me focused and hopeful of many wonderful things to come. Praises to our Almighty God ..who never leaves our side. "Show me the right path, O Lord; point out the road for me to follow.....All day long I put my hope in you." Psalm 25:4-5

ANOTHER INFECTION

The results of Ron's ultrasound and renal gram came in on Friday. No signs of any sort of blockage around the kidneys...and nothing new showed up on the renal gram. His creatinine is down to 1.6...which is great! His white cell count is starting to come back up some to 2.7... The doctors like to keep him right around 3. So we are almost there, too. His output has been very good, too. Friday night, however, we discovered that Ron's kidney wound developed another infection. The outer part of his skin was very red and inflamed. I had the nurse immediately page the doctor on call. He was started on an oral antibiotic that night. Saturday morning the renal surgeon came in and took a look at the wound and confirmed that it was infected. He removed the oral antibiotic and started back on vancomycin on IV...once a day. He has had two treatments so far. The inside of the wound looks a lot better. The outer skin is still very red....I hope the antibiotic knocks this out quickly and that we caught it early. Ron seems to be feeling fine but he says it is very tender and sore...which makes it difficult for him to do a lot of his leg exercises....but, he does what he can. I hope to speak with the doctors more this week as to the plans for possibly discharging Ron soon. The talk has gone back and forth as to when to let him go. Some have said to wait until he walks...but given that they are not aggressively working with him on rehab...I really don't see the point in keeping him here much longer ....at the rate that things are going here ...as to the lack of physical therapy..it is not really improving his chances of walking any time soon. I believe the best thing for him is to get him home ...once this infection clears up...and get him in a proper out patient rehab facility as soon as possible. Saturday marked 90 days that we have been here. I can't forsee Ron staying another month here ...and neither can he. It is taking a toll on all of us...especially...Thomas...he was so emotional this weekend. He ended up staying the night with us here at the hospital on Saturday night. He just cried so much ....as if he feelings were just so hurt. Every time his dad would tell him how much he loved him and how happy he was to have him stay the night ...he would just cry with so much emotion. It just broke our hearts. We need to get home ...for all of our sakes ...for our sanity ...and for inner peace...and for the comforts of home. I put my trust in the Lord ...he will bring this day very soon!

"Let your unfailing love surround us, Lord, for our hope is in you alone."

Psalm 33:22

Shortly after getting his ultrasound done ...we had just enough time to get back to Ron's wen he was called to go down to nuclear medicine for his renal gram. It took an hour to complete. We never had a chance to have lunch. We literally left his room at 12:15 for his ultrasound. We did not return to Ron's room until 2:30.....turned back around for his next test and did not return to his room until 4:30. By the time it was all said and done we made it down to the cafeteria at 5pm. It was a long day...but I am glad we were able to get the tests done. Hopefully, we receive results on Friday. We are also hoping to see Thomas tomorrow! Ron's family plans to come down for the weekend. Really looking forward to it. "How great is the Lord, how deserving of praise, in the city of our God, which sits on his holy mountain!" Psalm 48:1

THE TESTS CONTINUE

We were told that Ron's biopsy results also came back negative for antibody rejection...all great news to hear. But, we are still left trying to figure out what is causing his creatinine and his uric acid to stay elevated. He did respond well to the IV lasix ...his output increased ....I had hoped that this would have helped his creatinine to come down. They have put him back on oral lasix and will see how he does. Some of the renal doctors feel he needs to be back on the IV lasix for a while... but I guess we will just wait and see. They are doing an ultrasound right now on his kidney to see if there is any form of obstruction. Later he will also have a renal gram done to show the doctors the level of profusion the kidney is receiving. His white cell count is still low so they are going to discontinue his chemo drug today and possibly tomorrow depending on what his labs show tomorrow. They are also going to hold back on his Prograf tonight because his prograf level was at 15 and it should not go higher than 10. So, a lot of things we are having to deal with right now until we can figure out what is causing such an imbalance with his labs. I really hope that between the ultrasound and the renal gram we can finally get some answers.

STILL PUZZLING

Ron's coordinator just came by to advise the biopsy results for cellular rejection of he heart came back negative. The antibody rejection results take a few more days to receive. So far...good news as it pertains to the heart. We still don't know what is causing the issues with his decreased urine output and the elevated lab results that correlate with the kidneys. He just received his first dose of IV lasix ...he will get another dose around 8pm and then again tomorrow at 6am and 6pm. I talked to the renal doctor about stopping a maintenance antibiotic that they have had Ron on since we started using the wound gel as part of his wound care. We don't know that this would be affecting the kidney but until we can figure out what is going on I thought it would be best to remove it until we can sort things out. Fortunately, he agreed with me and stopped it going forward. It seems to me the issues with his lab results were not becoming a problem until after he started this antibiotic. He did state that in the initial urine sample he looked at there were some signs of crystals. I advised him that back in August when Ron went into renal failure ...his uric acid was very elevated and he ended up having an episode of gout...it was 24hrs later that he went into severe heart and renal failure. He advised he would run labs tomorrow to check his uric acid. Keep the prayers strong. Ask the Lord to give the doctors insight and that the tests they run will shed light on what is going on in Ron's body so that they can remedy it sooner rather than later.

PUZZLED

We are still waiting on the results of Ron's heart biopsy ..we had hoped to have it already. They did find out that his cardio vascular pressures are very elevated....at a range of 24 vs normal range of 10....he is on fluid overload. They will start him on lasix IV immediately to try to get this fluid off of him. His creatinin increased to 2.5 ....not good...he should be staying around 1.5 - 1.6. The renal specialist came by and advised that the final results of his kidney biopsy showed no rejection. The initial showed possible mild rejection but the final showed nothing. Not sure what to make of this. He took a sample of Ron's urine to run a series of tests to see if they can figure out what is going on as to why his creatinine is so high and his pressures are so high. If it is not rejection we are dealing with...I hope they figure out what it is before it gets worse. The renal specialist did mention that if the urine tests do not show something and his output does not increase and the lab results do not improve ...they will have to rebiopsy the kidney. He has already had 1100 mg of steroids ....they would have expected to see better numbers today....but if it is not rejection...this is probably why they are not getting the results they want to see with the steroids. Keep praying ....I hope this does not set him back much. We were so hoping to get out of here soon.

A LONG DAY WAITING

It is now 1:30pm on Monday....we continue to wait for them to take Ron down to the cath lab for his heart biopsy. He has gone all night ...since midnight without eating or drinking. It is still unknown when they are going to call for him. He is very hungry and getting tired of waiting. He had his echo at 8am ...but have not heard of the results either. His potassium was high today so they held giving him his potassium tablet today. Hopefully by tomorrow it will come back down to normal range. He had another dose of the IV steroid last night and they increased his Prograf level once more. I will not know anything on the biopsy until tomorrow.

RESULTS ARE IN

We received word from pathology on Saturday that Ron's biopsy did show signs of rejection to the kidney. It is however a mild level of rejection. The doctors have increased some of his steroids and started him on an IV steroid last night. He will receive one more dose of it tonight. He is scheduled for an echo tomorrow and they will possibly do a heart biopsy as well. They want to make sure the rejection has not reached his heart. Ron seems fine for the most part ...he has been a bit fatigued but not excessively. It seems as though they have caught this early. Thanks to the renal transplant team watching his lab results so closely. They did not waste any time once they saw his creatinine level increase to 2. As of this morning...it had already dropped to 1.9. I am hoping for even better results tomorrow. Keep Ron in prayer. I will keep everyone up to date once we know of his biopsy and echo results. Ron's parents came to Tucson yesterday and brought Thomas with them to visit. We enjoyed having him here. They headed back home this afternoon. We are so eager to get back home....with hopes that it will be very soon! Blessings...... "Anyone who wants to be my disciple must follow me, because my servants must be where I am. And the Father will honor anyone who serves me." John 12:26