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