OUT of the hospital

If you haven't already heard, Bruce was released from the hospital yesterday (Friday). They thought about keeping him another day but Gasparilla was taking over the Tampa Bay on Saturday and they knew how hard it would be to get in and out of the area with traffic and people that have been drinking since 10am. He has to return to the hospital on Sunday morning for blood work and then the doctors will adjust medicine if needed. If his numbers look worse, they could possibly re-admit him. His creatin was 9.6 on Thursday and then 8.6 on Friday so its making the progress they wanted to see. Still long way to go to get to 1. By then he should be feeling 100%. He already feels amazing compared to how he has felt for the past year. I can tell by just seeing his face that he is healthier.

He will be staying with his parents in Tarpon Springs for now. It is quite a drive to Lifelink in Tampa but still better than driving from here which is 2 hours. I cannot take the time off work to drive him back and forth 3 times a week. That will be the schedule for awhile, then the visits will reduce down as he starts to get the right balance of meds. We will still try to get them to let him start to be under the care of his local Nephrologist Dr. Russo as soon as possible so we can avoid the drive. Dr. Russo called me a week after Bruce was in hospital to check on him and I told him about the second surgery. His office called Bruce after that to check up on him, which I think is so great that they take the time to check up on him. The social worker from Lifelink said it was not very common for them to let patient be under care of different nephrologist but if they had a relationship with the particular doctor and knew he was experienced in after care of transplants, then maybe... I know he has plenty of experience so I am hoping it works out.

My parents and I are taking Beck and Roan for a visit tomorrow. They are both excited to see him and keep talking about when he gets to come home. Baseball practice starts next week and this is Roan's first year in Tball. It is going to be SO much fun to watch.

Today Bruce is very tired but it could be just the first day home from the hospital. He never slept there unless they gave him a xanax and then Restoral a few hours later. And even then they have him up by 6am taking blood. His blood pressure is down to a normal to low range. I'm guessing he may need to go off some of the blood pressure medicines as kidney starts working more. He has to take an enormous amount of pills a day. He took 23 this morning. We knew to expect that but its still a little shocking. His medicines and dosages will change a lot in the beginning but the prescriptions he left hospital with right now total $4000 a month. With United Health Care and Medicare our cost is $333.00 a month. Insane. Thank goodness for medicare.

I'm trying to figure out WHO our little pool boy angel is? Someone cleaned our pool while we were gone because the bottom and sides were green when we left and now it is crystal clear. If you did it, thank you! I feel like the house is falling apart around me since we have had no time or money in the past year to do anything to it.

Ken got the approval to go back to work now. He says he's feeling much better when he visited with Bruce on Thursday. Not only did he give him a whole new life, he is a great inspiration to Bruce because he has such a great attitude. I hope we all get to visit soon so the kids can meet him and his mother. It's still a strange thought to me that we may actually get to travel again.

One week since surgery #2

Last Tuesday evening / Wed morning was the second surgery. I'm happy to write that the past 2 days there has been lots of improvements. Overall Bruce feels SO much better. No matter what the tests are showing, his attitude has been nothing but positive and he's finally seeing the light at the end of the tunnel. Actual talk with the doctors about being released has stopped some of the worrying that he's going to end up back in surgery or worse. He hasn't had to do dialysis since Sunday. His output is great and he has lost tons of the water weight all on his own without dialysis. The creatin has not come down yet - it was a 10 today. The doctors want to see a pattern of it going down and all other blood work looking good, then they will let him go home. So that could possibly be Friday or Saturday if creatin starts to go down tomorrow. The wonderful new kidney seems to be doing it's job.

Ken and Bruce talk pretty much everyday now that Bruce is feeling better. Ken is still recovering at home in Orlando. He continues to have quite a bit of pain. He feels like something has hit him very hard in the lower back. This really was a rough recovery for him but I believe that is normal because it is known to be pretty hard on the donor. His mother has been taking care of him. So I am grateful to them both for uprooting their lives to give this unbelievable gift to Bruce. Everyday Bruce realizes a little more what he has been given and the feelings are very overwhelming. Ken has his check up at Lifelink tomorrow and he is going to visit Bruce at the hospital. I will find out more about how Ken is feeling then.

I'm home now...glad to be back with the boys. They are missing Bruce like crazy so I am trying to find a way for us to visit this weekend. Beck has asked me about it over and over so I know it's really bothering him.

More of the same waiting game

Saturday was good, we had lots of visitors and Bruce felt well and looked much better. Then Sunday morning he was miserable again. He got even more swollen and felt nauseous. The creatin went up to 11 so they sent him for dialysis for 3.5 hours. He was very discouraged, worried that he will have to go on dialysis again, kidney won't ever work, etc....When he came back from dialysis, he felt better, had some dinner and was more relaxed.

Today was a pretty good day. The doctor team consensus today is that it is a "sleepy kidney". They did a contrast renal scan to see more detail than an ultrasound and this confirmed that the kidney is working but needs time to wake up. He was told that first his urine output will increase then the creatin will start to drop. Today he has increased his output by probably double since yesterday so that is ONE hopeful sign. We got to push him outside in a wheelchair and hang out with our friends in the sunshine. Actually the doctor ordered him to go outside because they can see that he is going stir crazy being here so long and worrying.

news flash from nurse: renal scan report said "excellent flow to the kidney"

He is over his normal weight by 30 lb.!!!!! So he is holding a lot of fluid, but doctors are hopeful that the kidney will start to wake up and get rid of it. If the morning blood work shows his creatin went up then he will probably get dialysis tomorrow. It's not a bad thing it can just set back the blood work to not be accurate of what the kidney alone is doing so it prolongs this hospital stay even longer. So if tomorrow the creatin is lower than 8.1 then there is progress happening! If it is higher then he will get dialysis and have to wait 2 more days to get accurate blood results. That would be Thursday.

So I have decided after much distress to go home tomorrow. Hopefully I can come back on Friday. I am torn as to where I need to be right now and I hate to leave without actual evidence that he is on the track to go home. Also I will be leaving the super deal I have at the hotel. Someone decided to cut my already discounted hospital rate in half. I don't know who so I can't ask the right person- if I need to come back will they give me that again? I doubt that but it was an incredible gesture by someone there. Bruce obviously doesn't want me to leave until he's out of here, but he said he wanted it to be when his creatin started to get better. I hope tomorrow morning the tests show better results.

Finally out of ICU

Thursday and Friday Bruce had to stay in ICU. On Wed they were planning to move him then Thursday morning the Nephrologist changed the orders because Bruce was nauseous and thought they should keep eye on him in ICU. Thursday night Bruce felt worse and got very swollen with fluid. He got no sleep because he threw up several times from dinner and they were doing major construction outside his room window in middle of night. Friday morning he was in a terrible mental state. They gave him dialysis that morning to help with the swelling. They were trying to hold off on the dialysis because they wanted the kidney to function by itself but he really needed it. After it was over he got his typical headache, took some fiorcet, and then he felt much better. He ate dinner and he was more positive. They put in orders to move around noon and it took until 10pm before he got a room.

Today is Saturday and he is back on the transplant floor in nicer room. He has been unhooked from all the IVs and monitors again and catheter is gone. He is finally free to take shower and move around. The incision pain is much better and he hasn't used pain medicine in 2 days. Bruce's spirits have been lifted so much from the changes happening today. Thursday and Friday were really rough days. I had a hard time being in the ICU room for that long feeling like he would have been progressing more if he could get out of there. Not to mention it was a small room, everyone gathered in front of it for social hour, there was a phone on the wall right next to his door that would ring forever before someone answered, it was right next to the pediatric ICU and I could here babies crying which was enough to push me over the edge and make me have to leave for a break. So I am feeling positive today and relieved to be back on this floor and see some progress. All of the nurses on this floor have been excellent.

All of the Dr's say that there is no way to judge for certain how the kidney is functioning until sunday because it was put through such shock and then he had dialysis yesterday. The only thing they have to go on right now is urine output and that is very good. His creatin is 8.8 today. It was 5.1 before they did the second surgery. So it has a long way to go to get below 1. He may get to leave before then if they see it coming down everyday and all levels of everything else look good. There is no real time frame because everyone says it could go slow or fast and they can't give a real answer. His right leg is swollen so they need to do a scan to make sure there isn't a clot. Other than that it is just a waiting game to see the blood work results everyday and output.

Post-transplant day- version 2.0

Bruce was taken to ICU early and taken off breathing machine and sedation at 8am. He did very well and was aware of the time so first thing he wondered was what took so long and how in the world it was 8am. So I told him a little bit but the Dr. and I filled him in more later.

The Nephrologist that was the one concerned about the kidney not reacting like it should came to see us this morning. He was basically the one who pushed to do the surgery thinking something wasn't right. Not everyone agreed. He said he felt confident in the outcome now. He mentioned how much work the surgeon had to do to the kidney and that it can take it awhile to wake up and function. It could be hours or days. Bruce may need a dialysis treatment tomorrow if his blood levels look worse in the morning. Today his levels were not that bad considering what he went through. He actually started making urine again already....so that is a great sign. And his BP is normal. As in normal for the general population, not normal for Bruce and that never happens. The weird thing about it is that he was not given as much BP meds as he was getting the day before. It could be the pain medicine but I don't remember that ever making a difference before. So it is remarkable if that is because of the kidney working. We will soon see...

Basically he is starting all over like last week never happened. So today was the typical day of narcotic pain meds for the intense pain that makes him not want to move an inch. He only got liquid diet and slept most of day. Pain should get better by friday and he should be up again moving by then. The big deal is the creatin level but it may take awhile to see a drop in it after putting the kidney through shock.

Around lunch time they put in request to move back to the transplant floor to a new room. At 10pm tonight, it had not happened. I hope they don't do it to him in middle of night. No matter what, it's a good sign that he is stable and doesn't need the ICU monitors. I tried to nap in ICU today and it was like being in the middle of the ER tv show. Mostly because of the people working there being so loud, constant yelling, socializing, banging things around right in front of the room. I thought the ICU was a quiet place. Poor Bruce, he will have a horrible night. They also kick you out, no visitors can stay at night.

Tomorrow I am positive he will feel better from the pain and hopefully he progresses quickly.

Record breaking 2nd surgery

2am. Waiting with Bruce's mom and dad to see him for few minutes in recovery. There are no available beds in ICU yet so he will stay in recovery for now. They said it would be an hour before we can see him so I'm killing time until my battery runs out.

I will try to explain what happened the best I can at this hour. The head surgeon from Lifelink who did Bruce's transplant also did this surgery. After at least 6 hours of NO WORD at all, he walked in the room and first said- "he's ok, the kidney is in, i think it's going to work".... then we sat down for a long explanation of what he actually did. The renal vein had 2 parts that were a circling around the kidney in a way that anywhere the kidney was placed in the body, it was cutting off flow to one or the other side of the vein. He tried it in different positions, so then he took kidney out and modified the vein so that it would sit in the body without this problem. He had to shorten both parts of the vein. I asked him if he ever had to do this before and he said this was VERY rare and it took him forever. This is a surgeon with at least 20 years experience in transplants at the hospital that does the most transplants in Florida. Thank god Bruce had him!

So the outcome is that he will take awhile to wake up from this, they will keep him on ventilator and sedated ( where have i heard that before?...hmm september, seizure?) then let him start to wake up on his own slowly. He will need to get dialysis a couple of times because they expect it to take days for kidney to start really working after all it has been through. But we know it was working before, it just was getting it's flow restricted. He sounded very confident that the problem is resolved and he should be ok. Just not the road we expected and going to take longer.

After day or 2 in ICU he goes back to transplant floor. We just went and cleaned out his old room and we are still waiting to see him. Then I'm going to go to hotel and sleep until they call me to say he is moved into ICU room. This whole thing very surreal at this hour. Battery going...
praying for smooth recovery in next 2 days.

thanks to everyone!

Day 5- back to the OR

Things took a new turn today. The head Nephrologist said he was worried about Bruce's creatin level not rising and wanted to go back in (do surgery) and see what was wrong. Bruce panicked of course because we were just told an hour before that from a transplant surgeon that everything looked good on the 2nd ultrasound and they weren't worried. The surgeons and nephrologists all met and decided to do a test where dye was inserted into the main vein of the kidney and pictures taken to see if there was good flow in the vein. They took him to do that and immediately knew from the images that they were going to surgery. It was not a blocked vein, but the vein did not have the right flow and it seemed like something was maybe impairing it. So off to surgery he went- STAT.

He left the room at 6:30. It's 11pm now and I haven't heard a word. The surgery was supposed to start very soon because they were waiting for him. It was supposed to only be about 2 hours, so this is talking much longer and I am worried. The surgeon is supposed to come talk to me in waiting room as soon as he's done.

For everyone texting wanting to know what has happened, I am going to post this for now and hope I have better news soon. I might be staying at hospital tonight.