Home from hospital {once again}

Bruce came home today! Such a relief to be out of that warped place. There was a debate about discharging him since Friday morning. I was unsure he was stable enough yesterday because he could hardly walk on his own, having dizziness, and just didn't want to get out of bed. Today he suddenly got energy and was able to walk around on his own. He had the dialysis yesterday so it probably helped him feel better and get rid of some leftover drugs. It is hospital policy that he has an appointment somewhere for dialysis before he is discharged. The hospital did not get the coordination started with the dialysis center in time and insurance was not going to get approval until Monday, so he was going to have to stay until Monday after he has dialysis at hospital. Dr. Burtch (surgeon) fought this rule all day starting at 7:30am.

At 12:45 we got approval to leave. Papers were ready so all we needed was a person with a wheelchair. We waited for almost an hour and a half for that wheelchair! I went to ask what is taking so long and the nurses decide he can just walk out if he wants to and is able to. They also had to let him leave with 2 hospital gowns on because they made me take his belongings home and he had no clothes there since we did not plan for this today. We walked to the elevators and I started thinking that is was going to be long walk so we see a wheelchair parked near elevators with no one around so we stole it and took off. Perfect ending to this completely insane stay at this hospital. When we were on main floor, with his gowns on and me pushing the wheelchair fast, it really looked like we were leaving AMA.

So Bruce is much happier now and has not even had a nap- because he is so glad to be home maybe? He is certainly in better spirit and moving around normally. There is long way to go before he has no pain. We have to go back to the hospital Monday for dialysis... we hope. We have a name and number to call at 9am Monday to get it set up. Dr. Burtch went to great lengths fighting it out with the head of social services at the hospital all day so maybe it will go smoothly. He is swollen from holding too much fluid but it should get better with each dialysis and keeping diet in check. He has to go on a different diet than before and limit fluid intake to 1 quart a day which includes water in foods. We have to get dialysis place to order some special thing to protect his dialysis catheter so he can take normal shower. There is a follow up with surgeon on Tuesday and the stitches will come out in 2 weeks. The incision is no where near as bad looking as what I thought. It is just stitched (with staples) skin, not scabs or anything. AMAZING. He will see his Nephrologist Dr. Russo sometime when he goes to his dialysis center.

Overall the hospital stay was pretty horrific but most of it was made that way by bad care and organization. The physicians were all wonderful we have NO complaints there! It is just hard to figure out how it can be run so badly. Also Dr. Burtch said at least 4 times about how much infections are in the hospital. Kind of alarming don't you think?


  1. what a relief to have him home!!!! hope your tomorrow is uneventful and restful so you can be ready to go on monday with phone calls and dr visits!!!!

  2. Wish I could say your hospital experience was an aberration, but sadly, it appears to be the norm these days. Hospitals are a necessity for acute issues and care, but getting home asap is the best thing you could have done to enhance recovery and prevent infection. No matter what anyone says or does on Monday (I always anticipate worse case scenario) about any insurance blip or wrong scheduling, etc. do not, repeat do not, accept them doing anything but providing Bruce dialysis. Yell, scream, throw a tantrum, threaten to call the newspaper, whatever, do not let anyone bully you in to not getting what he needs then and there. Hopefully, all will go well and none of this will be necessary, but I have learned to prepare for problems and determine ahead of time my course of action. Whatever the difficulties, Bruce will fare better at home whenever possible.

  3. Hey, girl. You hang in there and keep fighting. Bruce is lucky to have you advocating for him. Everything I've seen in hospitals have given me the same impression. They are the equivilent of hell. But in a case of last resort, well I guess you have to cross the River Styx. I wish I could be there to offer some relief. Got your email about the troubles today - I'm thinking of you and sending good vibes...

  4. Glad to hear he is home and in a better mood. I agree on doing whatever it takes to get it done. How long before he can do dialysis at home again? Our doctors told us about an antibiotic block in the tubes to prevent infection. They said not everyone does it b/c insurance doesn't cover it. We're told the cost is about $2 per pt. per day. Not too bad in my opinion if it keep the infection away. Keep us posted.

  5. Hey Bruce and Amy,
    I am so sorry to hear about your experiences in the hospital. I wish there was something I could have done to help. Thank God that you are home now and things will be better. Bruce I am sorry that I could not get up to see you in the hospital, but maybe it was for the best because I would have probably made a scene and made it worse for you. I will come to see you at home. We went to Key West with our family for a long weekend. It was good to see all of our kids and grandkids. You were on my mind the whole time. You would have enjoyed it, my boys have the same sense of humor as you. Ask Dr Burtch when you can come back to PD. They will take good care of you on hemo but we miss you. You should be on the mend now. Remember Dr Russo said that the first week would be hell. The only good thing is that you probably don't remember it. Poor Amy does, she has really been there for you, more than you can imagine. Rest as much as you can and eat the right things. I will call you. Mrs Clause

  6. Hello Bruce & Amy,

    Amy, I have not had the pleasure of meeting you but I have heard great things about you. I work for the same company Bruce does. I was given this blogspot site from someone at the location Bruce works at. I have had a chance to review all of your postings since you started this and I would like to tell you that you are an amazing woman, wife, and mother. It is a relief for us here at RBSC to know that he has you by his side. I am however so sorry for the hospital experiences Bruce and yourself have been having. Just awful! Well I just wanted to stop by and let you know that we are thinking of you guys. We put a picture of Bruce in the RBSC August Newsletter along with the blogspot address because we were having quite a few people ask about him......we are glad to hear he is at home.....you are doing a wonderful thing here with this blog, this will help someone else out tremendously that god forbid might be going through this exact same thing. You two are truly an inspiration and testimony to the rest of us.


  7. Heather, thanks for your support and everyone there at Raymond!