SITTING UP

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

OFF THE VENTILATOR

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

STILL ON THE VENTILATOR

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

NO CHANGE

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

A BUSY DAY FOR RON

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

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

A FEVERISH DAY AND NIGHT

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

ANOTHER INFECTION

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

STILL FIGHTING

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

SEVERE PNEUMONIA

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

HEART AND KIDNEY STATUS

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

BACK IN THE HOSPITAL

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

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

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

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

HOME SWEET HOME

Praise God.....We are home!



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

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

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

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

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

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

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

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

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

We were all home..once again.



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



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



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

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

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



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

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

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

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



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



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

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



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

TREATMENT UPDATE

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

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

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

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

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

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

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

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


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