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

POSSIBLE KIDNEY REJECTION

We were told late evening yesterday that Ron's creatinin has increased to 2.1...and that a biopsy may be needed on the kidney to confirm if there is any rejection setting in. I finally had the doctors take a look at the echo that was done on Wed. because I wanted to make sure it was not the heart that was in rejection before they went in and disturbed the kidney. After a prolong period of time this morning I was given some answers to my questions. The echo on the heart looks fine....his ejection fraction is at 55% ...which is very good. There are some other issues going on with the heart that are far too complex for me to try and put to words for you. I will need someone to simplify it for me in the next few days and then I can try to explain...but at this time it is not serious and the doctors will continue to monitor with another echo on Monday and compare it to the echo that was done this week. Given that Ron's creatinine is still at 2 today...we were advised it would be best to move forward with the biopsy so we gave consent this afternoon. He is having the biopsy now and should be done within the hour. The doctors are going to try to push pathology to give results tomorrow rather to put this off until Monday. I don't know what the treatment is if he is in rejection for the kidney. It could be the same as it is when the heart is in rejection...but the renal side of things is new territory for us ...so I am learning this process as we go along. I will keep you informed as soon as I know more. Our hope is that he is just dehydrated which can also cause the creatinine to rise. They have decreased his Lasix by half...which I had been wanting them to do over two weeks ago...but they just decided it was time now. Keep us in prayer....the longer we are here ...the harder it is to keep my patience in check with some of the doctors and staff here. I am in serious need of guidance from the Lord as to whether or not to keep Ron here at UMC or if I should begin speaking with people at Mayo in Scottsdaly and consider a possible transfer. I am torn at this point as to what I should do at this very moment. Or simply wait until he is discharged and then consider having doctors there begin to take over his case. Rob did stand Ron up yesterday and had him take two steps and then pivot to sit in his recliner. He did this three times ...from the bed to the chair. He said it felt so good to be able to move....of course I missed it all....I was out running errands at the time. He had Rob take a picture while he was sitting in the chair so that I would believe him that it really did happen....LOL I will update the blog later today.

MORE OF THE SAME....BUT IMPROVING

Time to catch up. It is been a while since I entered a blog. All went well last week with Ron. Still doing much of the same with physical therapy. We make it a point to get him in his wheel chair several times a day and make our way to the cafeteria for lunch and then outdoors for some sunshine. We have had great weather here in Tucson. The high on Sunday was 78!....can't complain about that. The wound on Ron's groin is completely healed. We are still working on the one on his bottom...it is healing nicely but still have to continue treating it and dressing it. The kidney wound continues to show improvement in the healing process. The doctors took a look at it yesterday and are pleased with the progress. Ron did quite a bit of physical therapy yesterday. He can now scoot himself into the wheelchair using a slide board without any assistance from anyone. It was great to see him accomplish this. The next step is a portable toilet ......yeah!!! They are also wanting to start practicing transporting him from the wheelchair into a car. They were looking around for someone who may have a sedan type car. I explained to them this is all well and good for the sake of practicing and regaining strength...but in the end...we don't own a sedan....we own an SUV....so the task will be how to get him into the SUV. This remains to be seen. I may end of up having to sell the SUV and buy something smaller if he does not get to this point soon. Some of the therapist have said it could still be two more months before Ron can walk....if this is the case...we may have to go home with the use of a lot of equipment for him to get around and physical therapy either at home or as an out patient at a local facility. I think by the next week or so we will know more as to the route we are going to have to take. We still have a long road ahead of us ...but hopefully, with the right care, support and equipment ...it will go smoothly. If anyone knows of any good physical therapy facilities you can recommend, please let us know. I want to start getting my resources lined up so as not to wait until the last minute. I would need something in the Goodyear, Avondale, or Glendale area ...for convenience purposes. Thomas was here for the weekend. I actually had to run down to Goodyear to pick him up at daycare because my sister-in-law was out of town for the weekend. I left here right after lunch....picked him up and my niece and turned right back around to head for Tucson. It was hectic watching him and Ron...but it was so nice to have him with us. On Sunday late afternoon I took them back home and stayed with him for his doctor's appointment on Monday. It was important to be there as this appointment would tell us if his ears were still infected and if he would need to see a specialist. As it turns out....he does. One ear was still infected and there was still fluid in both. He has an appointment with the ear specialist next month on the 18th. After his appointment I had to drop him back off at daycare....he broke my heart....he hugged me so tight and cried that I had to leave. He knew I was coming back to Tucson with his dad and I would not be picking him up that evening. He eventually settled down for "story time" and I left....with tears in my eyes, too. This morning, Ron and I had breakfast in the cafeteria early this morning. We are enjoying some quite time in a small sitting area of the hospital as I get caught up on our blog. We look forward to another productive day. I also wanted to share with you that we received a letter from a loved one of our first heart donor yesterday. It was great to finally find out who Ron's donor was two years ago. We plan to respond back to them. They have offered to send us photos. He was 30 years old with two children ....he was from California....and a follower of Christ. I will try to keep the blog up to date as best I can. Hope everyone is well. Keep the prayers coming. God is always listening!!!!

Blessings.......

CRUISING ALONG

Hello All.....

We continue to watch Ron build some strength every day. It is a slow process...but to see a little bit more each day makes it all worthwhile. We are truly made to practice patience in this stage of our journey. We must wait for the Lord's plan to come to fruition in Ron's healing process. We know he will walk again...it is only a matter of time....and of course, we know that these things don't happen on our time...but rather on God's time. He knows when the time will be right and he knows what is best for all of us ...especially for Ron.

Yesterday and today I helped scoot Ron into the wheelchair from his bed..it is just a matter of helping him scoot his bottom directly into the chair a little bit at a time...it wears him out...but it feels great..he says..once he is in the chair. We had lunch in the hospital cafeteria both days and then took a stroll outdoors to various areas around the hospital. We had nice talks and people watched as well. The weather was great to be outdoors. We then came back in and cruised the halls and the gift shop. To exercise his legs and arms I would have him pull himself along with his legs and then use his arms to turn the wheels when his legs would get tired. It is good strength training for him.

They had a vendor in the cafeteria selling nurse scrubs and supplies yesterday...they had some with the U of A logo ...he had to have some....so we bought two tops...a red and a blue one. After two heart transplants and one kidney transplant...he has definitely become a Wildcat fan.....sorry ASU alumni and fans....don't hold it against him.

Rob came by from the Wellness Center to see how he was doing and helped him to stand 4 times this evening. He is at the point where he only has to give Ron a boost to start out and then Ron is able to lock up very well on his own. He is getting a little more balance and able to bear more weight on his own...Rob is just there to give support. He is trying to teach him to rock back and forth to shift his weight from one leg to the other. He still has to work on this quite a bit...he loses his balance very quickly as he starts to do this. In time....
The main objective right now ...or the focus, I should say...is to strengthen the torso area....because if this is strong ...then he is able to control the balance of his body better.
His wound is looking very very good now. It is healing very nicely. The renal transplant doctors were in today to do his dressing change and were very pleased with what they saw. The two that were here today felt that we should continue with the treatment we are doing using the wound gel to help stimulate the tissue to continue healing and granulating so well. I have been taking photos of the wound to see its progression. It is so amazing to see how it started ..the size and the condition of the wound and to see how much smaller it is now and how much healthier it looks....quite impressive. We will wait to see what the head surgeons say...hopefully, they will agree with the doctors today. The drawback of closing the wound right now is the risk of more infection. If you close the wound ....it will stay warm and very moist ...a feeding ground for bacteria to grow. So we are all for continuing to let it heal from the inside out. I never thought I would be agreeing to this ...but now, seeing the healing process take place for myself...I realize this was the best route to go.

So...the plan remains the same ....keep exercising to continue strength building...keep pushing on and keep believing in the power of prayer and in the Grace of our Amazing God. He continues to sustain us ....He continues to help us persevere and to stay positive through this all.

One more special note:

I sincerely want to thank those who have made contributions to our donation fund we set up at Washington Mutual. Unfortunately, I am not able to see specifically where the donations are coming from because they just show as "bank by mail" deposits. But, you all know who you are.....I thank you so much. Your generosity is very much appreciated. Every little bit helps right now. Just because I am here ...the bills do not cease back home. We still have the mortgage to pay and utilities to keep up with as well as the living expenses here. I cannot thank you enough......blessings to you always!


"Give thanks to the Lord and proclaim his greatness. Let the whole world know what he has done. Sing to him; yes, sing his praises. Tell everyone about his wonderful deeds. Exult in his holy name; rejoice, you who worship the Lord. 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."
Psalm 105:1-5

MORE PHOTOS

Not much to report today. The renal surgeon did come by and mentioned that they will give the wound gel a few more days to work on Ron's wound. By Wednesday they will decide if they want to go in and close up the wound and let it continue healing on its own. If the gel helps the expedite the granulation they want to see in the tissue ..it just may happen. How great that will be. One less thing to worry about once this is done.

I finally added new photos to the blog...there are more to come....enjoy.

There is no greater joy than the love of our family. We are truly blessed to have such a wonderful little boy in Thomas...he is just an awesome child. He keeps us young and definitely keeps Ron's will strong to continue fighting to get well.

"God's way is perfect. All the Lord's promises prove true. He is a shield for all who look to him for protection."

Psalm 18:30

SNOW IN TUCSON

We had quite a cold snap here in town overnight. We woke up to quite a bit of rain and the Catalina mountains are covered in snow. It was an incredible view from Ron's room. Too bad the blinds are installed within the glass pain of the windows or I would have been able to get some great pictures.
The rain clouds have completely covered them now. Much more rain is on the way.

The physical therapist had us up at 8am sharp today. He came in to get Ron up into the wheel chair again. This time a sliding board was used. He did fairly well....with our help of course. It is easier for him to scoot into it rather than trying to get him to stand and pivet into it...more chance of him falling this way until he regains more strength.
We ended up leaving the floor and going down to the cafeteria for breakfast. It was nice for him to do something different. He wanted to take a stroll to the gift shop as well...he ended up buying another "painted ponie" ...he collects them.
Once we made our way back to the room the therapist came back to help him back into bed...same process of scooting.
He was pretty exhausted after all that.
His wound care went well today. The area seems to be narrowing...signs of healing...however, we need the base of the wound to start healing a little more quickly than the rest of the wound. It does no good if the outer and upper area of the wound begins to heal and close if the base is still not healing....they would end up having to reopen the wound if that happens. We started an application of a new wound gel last night and again today. The plan is to use it through the weekend and have the doctors check it again on Monday to see if the gel has made any difference. Our hope is that it will.
Everything else has remained the same today. No other changes to report.
Ron's edema continues to return when he is sitting up. His feet are quite puffy right now and very sensitive to the touch.
It will be so much better once he is walking again to redistribute the fluid that keeps building up at his lower extremities.
Of course, the chronic back pain is always there. It never gets below a pain level of 4 or 5 on a scale of 1-10 (even with pain meds). He has never been at zero. Until I can get him upright and eventually treatment for his herniated disc...the pain is going to be continuous in this area.
But, right now the focus is just getting him walking...we will tackle the back at a later time...for now, he relies on a lot of pain meds to get him through the day.

Thomas is also battling another double ear infection. His third in two months. If this one does not clear up ...we will have to start looking at putting tubes in his ears. I was not happy to hear this but it is what it is. Everyone I have spoken to were so happy once their kids had them done...they say it made a world of difference.
He is scheduled to see the doctor again on the 25th. If the fluid in his ears has not cleared up...then an appointment will need to be made with an ear specialist.
One more thing to add to my "to do" list.
We miss him terribly ...there are no words to express how difficult it is to be without him...my heart aches to be with him every day ...to put him to bed...to read stories to him ....to give him his baths ...to make his meals and listen to his funny conversations and those that are not so funny ...they are quite "grown up" for a three year old.
I don't think he will be up this weekend but soon...we hope.

The weekend is here once again....we will continue on our usual routine of exercises and passing the time as best we can.

As I close this blog...staff are running down the hall back and forth...there is a patient coding at the end of the hall from Ron's room. I pray they save whomever it is. It is something we have come to see quite a bit here these past two months. I know the feeling of this all too well...I pray for the family as well.

Have a safe and happy weekend...hug your loved ones every chance you get....to parents...enjoy and embrace every moment with your babies...do not take your time with them for granted.


"1Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. 2This I declare about the Lord; He alone is my refuge, my place of safety; he is my God, and I trust him." Psalm 91:1-2

HAPPY VALENTINE'S DAY

Hard to believe we are into Thursday already. I don't know where the week went ...but it definitely flew by so quickly...I am, once again, behind on my blogs.
So...let's get caught up.

On Monday, they finally came in to do Ron's echo. Everything came back looking really good..the heart is doing well..healthy and strong.

On Tuesday..they did a chest x-ray...Ron had been having some stinging and burning when he would go to stand up with the therapist...we weren't sure if it was a muscle tear or if one of the pacer wires had come loose....we were told today that the pacer wires are all intact. So it is a minor pulled muscle and/or tear...fortunately the wires are fine...the muscle can heal on its own.

He has had several IV lines go bad and redone the last few days. His veins have just had enough. Two of the lines that were done the last four days were done by the pediatric ICU nurses....which ended up in a finger each time....ouch!
Today the last one in his finger went bad. Today we had a guy come by from one of the labs and was able to get one on his arm again...much better! Hopefully, this one will last a while longer than the others.

Wednesday the wound care nurse was sent in to look at the kidney wound site to see if they can put a wound vac in. She said the wound is healing well...however the base of the wound is not healing as quickly as the upper part of the wound. They want to see the tissue granulating better and it's not...so a wound vac is not recommended at this stage of the healing process. She has also recommended a wound gel that we will start using tonight to see if that will help stimulate the healing process in the base area.
We hope to get one of his antibiotics stopped tonight, Cipro.....which I was happy to hear.
He will remain on the vancomycin while we are using he wound gel.
He also stood a total of 5 times with the help of Rob from the Wellness Center.

For now...everyone is just focusing on the wound care and his rehab. It is still hit or miss when someone comes by to work with him...yesterday..we were on our own...but he exercised on his bike pedals and his leg exercises in bed.

Today was a fun day..not only because it was Valentine's Day ..and even though we spent it here...it was special because we were able to spend it together. We had our favorite for lunch.....SEAFOOD!

The best part of the day was when the physical therapist came in and had him shuffle his bottom along the side of the bed..she then grabbed a wheelchair with a removable arm and had him shuffle into the chair with our help!....it was great to cruise the floor in a wheel chair for a change. She had him do most of the work while he could tolerate it...he would have to move along using his legs to get them stronger and when his legs would turn to jello...he was able to use his arms to turn the wheels...he really enjoyed getting out of his room and visiting everyone. We even escaped the unit and went across the hall to visit the nurses in the ICU. Hopefull, we will do it again later tonight.

He is looking really good...they have adjusted more of his meds ...switched some around and he seems to be responding to them well...his glucose levels are also staying within range ..which is a great thing. To see him sitting up on the side of the bed without any help ..it is hard to believe he cannot walk because he does it so well...but then you see him strain to stand with support and reality sets in that he is starting all over to learn how to walk .....slowly ...but surely...we are hopeful it will come together real soon.


Happy Valentine's Day to everyone...may you be filled with love ....especially the love of Christ!