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.

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.

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.

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!!!!!

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

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.

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.......

SUPER BOWL SUNDAY

We really had a great weekend....we spent groundhog day with Thomas and with Ron's parents.
I had car issues to deal with but I took Thomas with me so we could at least spend the day together while we had the car towed to a repair shop.
I should know something by Monday.
Thomas and my in-laws just left to head back to Goodyear.
We had a nice visit today. We had an early Super Bowl meal together as a family.
Thomas had a chili dog and a little bit of pizza.

Ron has had a good day. He did some of his exercises early this morning...we will do a few more tonight.

For you super bowl fans out there....hope you are enjoying the game.
We watch tonight in memory of our friend, Cheryl Britton, who was a big Patriots fan.
So, in her honor....we say....."GO PATRIOTS"!.......
We know she is watching from the best seat in the house!
Ron said..."OK Cheryl...it's game time...this one is for you!"

HE STOOD UP!

Amazing...that is all I can say ...is amazing. Rob..the guy from the Wellness center came by to work with Ron today. He actually helped him to stand for the first time since Dec. 29th. It is incredible what can be accomplished when you have someone helping you that knows exactly what to do. Ron sat up in bed on his own and really impressed Rob as to how well he was able to do this. He then had Ron rock himself back and forth and try to lift his bottom off the bed by pressing his hands over his knees...Ron kept saying he did not have any strength to do this ...he could not believe how much it took out of him to just do something that seems so basic. After a few attempts of this...Rob decided to help Ron ...he put his knees up against Ron's knees to support him from buckling. Rob then put his arms under Ron's underarms...once again as support. He then had Ron rock three times and then Rob lifted him. The first time his bottom just barely came off the bed...but we were so excited because that was the most he had done thus far. Rob let him catch his breath for a moment and then they tried it again....this time he went up a bit further...and again we were happy. Then Rob decided he would try one more time. On this attempt...he nearly had Ron completely upright..and he held it for at least 3 seconds. It was so incredible to watch. Ron said it felt so good to do this. But he was very exhausted at that point. We could not believe it! I was clapping and whooo-hoooing the whole time. It was just awesome. Rob will not be here over the weekend but we will continue with the exercises they have given us to work on. The main thing is the pelvic lifts...this will help a great deal with the muscles that help you to stand. At times it does not seem as though we are excercising enough..but given what Ron did today is an indication that every little bit that you do does make a difference ..so we will continue with what we are doing. Rob has set a goal to have Ron walking from the bed to the recliner by next Tuesday. What an accomplishment we have seen today. Praises to our Lord who continues to provide us the strength, perseverance and patience that we need along this part of our journey.

WAITING ON A ROOM

We are still in the ICU...there are no beds available yet on the regular floor....and we are told there are still 4 patients ahead of us waiting to move to the other floor as well. If it does not happen today then we will just wait until tomorrow. Everything happens as it should and we will just take it all in stride. He is having another echo done right now. I wanted to make sure this was done early enough before moving him to the other floor. He is still having bouts of nausea and I want to make sure there is no rejection setting in before moving him out of ICU. He will get his 4th and last dose of Rituxamab today...this is the chemo-like drug that keeps the B-cells at bay so as not to cause antibody rejection. He is scheduled to receive this at 1pm today via IV infusion.

The doctors made rounds again late afternoon. We further discussed the need for a pacemaker for Ron. They exlplained we should not wait longer than Thursday or Friday to have he pacemaker put in. They indicated that Ron is on full support of the outboard pacemaker right now. The leads he has attached to his heart and the outboard pacer have been in for a month now...they are not made to last for a very long time. They are concerned that the leads could wear out in the middle of the night and then they would have to rush him to the O.R. with hopes of getting there in time. Whithout the pacer his heart rate goes down to 30 beats per minute. They also indicated that the problem Ron is now having with the low heart rate is not only due to the heart medication he was on to bring his tachacardia under control...they also believe that there was damage to the synode in his heart (which is what paces the heart) due to the two severe episodes of rejection the heart endured last month. Thus, the chances of his heart rate increasing to a normal rate are unlikely. Given this information...Ron and I decided that it would be best to proceed with the surgical procedure of putting the pacemaker in. And, as Ron thought about the leads possibly giving out in the middle of the night...it made him very uneasy. He felt that he would be up to doing this on Thursday or Friday. We advised the doctors of our decision...so we will wait to see what day they are able to fit him in. We ask for everyone's prayers that this will go well...that Ron will begin to feel even better with the pacemaker and no further complications will arise. Physical therapists came by this afternoon to help him with some leg exercises. He sat along the edge of the bed and did everything they asked of him. He was very tired and his sternum was hurting but he stuck it out and did his exercises. They were very impressed with how much he was able to do. I guess the exercises we have been doing on our own are really helping him. He is so eager to start walking again...he wants to do whatever it takes to make it happen. His edema has increased so we are working to try to get more dialysis treatments in as much as possible. We don't want this to get out of hand because it will then further delay he ability to walk. He was very talkative with everyone that stopped by to see him today. I hope tomorrow brings more good things. "Be merciful to me, O Lord, for I am calling on you constantly. Give me happines, O Lord, for I give myself to you." Psalm 86: 3-4

BACK TO HIMSELF

Ron is definitely feeling more like himself today. He is much more verbal in what he wants and when he wants it...especially his pain medicine. He was very specific on what he wanted for breakfast this morning ...he was very aurnery with the nurses this morning too..... He is in a better mood now ...given that I have returned from running errands for him at Wal-Mart. As I said before....he is getting pretty good at letting me know what he wants...and he wanted a few things today. After breakfast he sent me out to get him some western magazines....some "snacks" (gummy worms) .....and a few other things....It is so nice to see him sitting up in bed reading through a magazine...he has not wanted to do this...or felt up to doing this in such a long time. It is such a good feeing. He sat up in the cadillac chair at 7am this morning....he got a good early start. I know I find myself saying this alot but he is quite amazing! This latest thing the doctors are now discussing wih Ron's case is that now he may be needing another pace maker...yes, another one. Ron just can't seem to escape them. Prior to his first transplant Ron had a diffibrillator/pacemaker...then after his first transplant...his heart rate always ran low...so he left here with a pacemaker. This time around...because they had to give him so much medication to keep his heart rate down when he was having so much tachacardia...(elevated heart rate)....this medicine lingers in your system for a very long time...months...so now, his heart rate has decreased more than what we would like to see in a transplant patient. The lowest they took him this morning was 56...it could have gone lower but they did not want to chance it. He is still on an outboard pacemaker to keep him at a rate of 99 -100 beats per minute. They wanted to take him to surgery today to put the pacemaker in...but Ron and I advised them we were not ready to do this. He is still hurting so much from the surgery he just had on Friday for his sternum......We just want to give him time to heal from this....and wait to see if his heart rate gets back to normal range on it's own...it's a long shot....but Ron has managed to beat the odds more than once..so why not wait and see....it can't hurt. We will just continue to speak to the Lord and ask for his guidance and grace to do what he sees to be right for Ron ...if anyone can continue to heal his heart it is HIM. Ron is fine with the fact that he may need a pacemaker. As he sees it...he came with one...he has no problem leaving with one. He has been through the worst of it....this is minor given everything he has overcome. He is almost done with his dialysis treatment today. I asked the doctors to work on getting more fluid off of him as he had very puffy feet today. We had planned on having him excercise on some foot pedals last night while he sat on the edge of the bed but is feet were too fat to fit in the pedals. I told the doctors to work a little hard to add longer time to his dialysis treatments. They started to today...however they gave him pain medicine just before starting dialysis...this tends to drop his blood pressure...and when his blood pressure gets too low...they cannot pull much fluid off of him...so we are not getting as much off as we would have liked. Now, I need to work on getting them better coordinated with the time he gets his pain meds vs when he will get dialysis..just some needed improvement on coordination and communication. Hopefully, physical therapy will be here today...they have put in several request for a PT consult ...but we continue to wait on this. In the meantime..I continue to help Ron exercise his legs and arms to get some strength in them and keep his joints from tightening up more than they already have.

A BETTER NIGHT

Ron had a much better night last night. They gave him something to help him sleep...it worked! We both slept very well. This morning was the first time he ate ALL of his breakfast and his protein supplement as well. He seemed in better spirits this morning. The pain is still there but not as severe as in days past. It was not as uncomfortable moving from the bed to the chair this morning. After breakfast I gave him another good shave. He looks really good. We kept the mustache this time. He is getting a breathing treatment now.....albuterol. They removed his foley today...this should make things a bit more comfortable for him. He is still showing signs of decent urine output. His wounds were cleaned and treated today...the doctor says they are looking better. We hope for a quiet Sunday and that the Cowboys beat the Giants!

A PAINFUL NIGHT

It was a challenging night for Ron...the pain kept him up all night. Even with the morphine drip ....the pain was more than he could sleep through. They have added percocet along with the morphine early this morning. However, the doctors were in cleaning and checking the kidney transplant wound....which was also very uncomfortable for him. The wound looked a little bit better ....the fluid that was draining from it is clear...which is a good sign there is no further infection further down. We are hopeful it will heal well. He is still extremely tender along the sternum area. We hope in a few days this will start to subside. He ate his breakfast well this morning ... a nice omelet with lots of protein. He also drank an ensure with his protein supplement...he seemed to tolerate it well. The renal doctor mentioned we really need to get him to take in as much nourishment as possible to help with the healing process. He is doing his very best to do this. He is finally sleeping ....I think the additional pain medicine is giving him a little bit of comfort. They are setting up his dialysis machine to get him started on another treatment. He seems to sleep fine through this. Hopefully, later today we can get him up in the chair again. The night nurses did a good job cleaning and treating the wound he has on his tailbone. This developed early on from his bedpan. When he coded initially, he was on the bedpan and when they did compressions on him for 1/2 an hour...the bedpan was still underneath....causing alot of bruising. Since he has been in bed so long ...it has caused the area to break down....in order to avoid any infection ...they have to keep the area clean and patched up....but it also helps to keep him off of it as much as possible...so the more frequent we can get him in and out of bed into a chair ...the quicker it will heal. He is getting a short run of dialysis today...only 2 hours...so hopefully, we can get him cleaned up and in a chair shortly thereafter. He is still being paced....the doctors want the heart medication he had been on to slow his heart rate to be completely out of his system before removing the pacer all together. Without the pacer his heart rate goes down to about 56 on his own. I think they would like to see him stay in the 80-90 range without the pacer. All in good time......

OFF TO SURGERY

Ron went into surgery at 1pm today. Surgery should run about an hour and a half. He seemed very calm going into surgery and felt well. He seemed to have a good night's sleep. The usual back pain was his only issue today. I don't remember if I mentioned in my last blog that they had to open the incision where his kidney transplant was done. There was a small opening which showed signs of infection...so as not to let it spread...they had to open the area and clean it out. I had a chance to look at it with the doctors today ...they claim it looked better than yesterday. I guess I have to take their word for it ..since I did not see it yesterday. They will not close it back up because they want it to heal from the inside out. If they close it up ..it could cause furher infection to occur. My big concern is that Ron is diabetic and he is immunosuppressed. This can cause the healing process to take longer. There is the possibility that a wound vac may be used to help the healing process move along faster. We will need to wait and see what they decide. I have just been informed by his nurse that he is out of surgery and has been removed from the ventilator. He should be back in his room within the hour. All went well. They did not have to completely rewire the sternum...the damage was not as bad as they anticipated it to be. They did have to remove some dead tissue ...but were able to close the area up well and restaple things. They ran another echo on his while he was down their ...his function is not as high as it was a few days ago. It is running more in the 40-50 range right now. But, we will be hopeful that it will come back up again. They did do the cardioversion on him and were able to bring his heart back to a normal sinus rythm. All positive news to me. Thanks again for all the good ...good thoughts and the prayers

A RESTFUL DAY

Ron had his renal gram early this morning. Nice to get it out of the way early...now he has the rest of the day to himself....or something like that....
He woke me up at 7am...he wanted to exercise his legs. He did so good. All I really had to do was support them up for his...he did all the bending pretty much on his own. He is so remarkable.
The renal doctors came by to see him...they were looking at his incision from the kidney transplant and noticed there was a small opening in it. They had to open the incision some to get a better look at it. They say it will need to stay open to heal on it's own. They will still keep it covered with dressings but it should heal fine. Fortunately, he has been on an antibiotic already to keep his sternum from getting infected.
No dialysis today. His cardiac pressures are doing well today and his electrolytes are in normal range...they will give him a break today.
He is still scheduled for surgery tomorrow to repair his sternum but I have not been told of the time just yet.
They also plan to cardioconvert him while in surgery...this is when they shock his heart to bring it back to normal sinus rhythm. Right now he is still in atrial fibrillation. It makes me a bit uncomfortable when they do this...but I trust in the Lord to be there with him. So, with no dialysis today and no surgery today...we hope for a nice restful day.

AN ACCOMPLISHED DAY

The final results came in on Ron's echo...his ejection fraction...the amount of blood that is pumped from his ventricles is at 60-65%...it is practically normal.
We are very pleased with the results.
All went well with the anti-rejection drug administered today. He seemed to tolerate it very well. Dialysis was very successful as well..they were able to pull 3 1/2 liters of fluid. His blood pressure did very well during the process. His nurse and I gave him a really good bath today after dialysis. He then sat in the cadillac chair again today before dinner. As he did ...I gave him a really good shave. He had become quite scruffy...so I shaved his head...for those who don't personally know Ron...he prefers the bald look. It's a great look for him. It is nice, clean and smooth. I shaved his beard and his mustache. He looks great! He cleans up so nicely. After about an hour and a half..he was ready to get back in bed. Dinner came and he just tasted a couple of things. I think he was still full from everything he ate at lunch. We watched a couple of shows on TV together and we talked a bit more about the weeks before. He is asleep now and I will soon follow.

Therefore, let all the godly pray to you while there is still time, that they may not drown in the floodwaters of judgment. For you are my hiding place, you protect me from trouble. You surround me with songs of victory. Psalm 32:6-7

AHHHH ..LUNCH!

Ron was finally able to have lunch. He had to wait for his dialysis treatment to end before he could eat. I ordered pizza and wings for the nursing staff today and he wanted to know if the "pie" had been delivered yet. So, once it arrived, I saved him a slice of cheese pizza so that he could have after dialysis. He really enjoyed it. He did a great job with swallowing and it set well in his stomach. Shortly thereafter, his lunch tray arrived. He ate crispy baked fish and mashed potoatoes with gravy. He ate very well. He also had a ginger-ale. The best part was eating his cousin's homemade chocolate chip cookie...with milk. They have started administering the new anti-rejection drug he received last week. It is administered as an infusion via IV. This will run for a while. He is sleeping now. They gave him percocet and benadryl while he receives the drug. It is to help with any affects he may have from the drug. Given that he was totally sedated the first time he received it...we really do not know how he will respond to it. So far...he feels fine.
The rest of his day should be relatively quiet. He may sit up in a chair later tonight.

BREATHING ON HIS OWN

The ventilator was removed yesterday evening. Ron is breathing very well on his own. He was very happy to have this removed. I had entered a blog last night but I must not have saved it and somehow was deleted. He had a good night. He spoke to everyone from time to time...but kept going back to sleep. He said he felt like a train wreck. He looks great though. His cheeks are nice and pink. The doctors came in and used their portable echo machine to get an idea of what his heart is doing. He is at 60% function right now. Pretty darn close to normal.
He is on antibiotics to keep any possible infections at bay...given the two incisions that had to be done on each leg where the tubing was placed for the heart/lung machine. Also, they have not repaired his sternum yet. They were waiting to give him some time.

He has slept most of today. He was just really wiped out. He woke up early this morning with a slight fever. It worried me some ..but as I have come accustomed to do...is give it to God...pray about it and let him handle it. The fever came down and he just rested the remainder of the day.
He was very alert this evening after his long siesta today. He asked me a lot of questions as to how long he has been here. He does not remember anything of the weeks' events. He wanted me to explain to him what an ECMO machine was and how long he was on it. He does not remember anything after his first incident when he came out of surgery and he does not remember us celebrating Christmas. He thought he had missed Christmas. He does not remember the interview we did with the newspaper reporter. I don't know if this is temporary or if this has anything to do with how long he had been down after cardiac arrest. Only time will tell. He does not remember talking to me on the phone the half hour before going into cardiac arrest.
He keeps asking questions throughout the night. He said it is really bothering him that he cannot remember anything. I told him just to give it time. He has had a very rough week...it will just take time. He is being fed through a feeding tube right now...they plan to do a swallow test on Monday to make sure he can start drinking and eating on his own. I look forward to seeing his progress in the days to come. He asked the nurse to sit him upright so as to feel he was sitting in a chair this evening. I thought that was a really good sign.
Blessings to everyone. I was happy with our day. Ron is still with us. How great ....how great ....is our GOD!...We all have seen....how great is our GOD!

ANOTHER STEP FORWARD

( I found the blog entry I thought I deleted..it was still in "draft" form) Ron has been off the ventilator now for approximately one hour and is doing very well. It was a quiet day for the most part...they kept him very calm so as not to fight the ventilator until the right time to remove it. He spoke to us a little bit...he said he was tired. He is resting now again. Dr. Copeland asked him how he was doing...and he replied "I can't complain". He was happy to see everyone. Everyone that has stopped by his room ...nurses that were off when everything happened and heard later after the fact are in total amazement and much delight to see him back. It has been a good day...a step forward in the right direction. We are pleased and very grateful. For everything comes from him and exists by his power and is intended for his glory. All glory to him forever! Amen. Romans 11:36