Bob's back in NJ

Hi, Well, Bob arrived at the Medical Rehab, or in regular speech Nursing Home at 4:30 Friday afternoon. We quickly realized what a faux pas it is to arrive during DINNER and on a FRIDAY and WITHOUT ALL his medical records!!!!!! Sorry next time we'll try to arrive at a more acceptable time. I'm not going to name the facility he is in because I may have some really nasty things to say about it. Sat. was much better. I went there and found Bob clean in a nice freshly changed bed. I also brought his list of medications and they had given him everything except one item that was scheduled to arrive from the pharmacy. He is promised the air bed and an electric bed by Monday. He will also receive another evaluation from the Physical Therapist and hopefully will be more willing to use the brace and start getting up. I very politely told the staff that I live just 15 minutes away and that I'll be in and out all the time. The Sat. staff was very friendly and really seemed interested in taking care of him. They did monitor what he actually ate by the high tech way of actually looking at his tray NOT asking him. They brought him alternates that he was willing to eat! The hospital he was in was terrible in this regard. I'm starting on sock number 4 and have only THREE more day of work before summer vacation. My daughter took my camera to a wedding so I'll post pictures as soon as I can. (Of the socks not Bob, the yellowest man in NJ)

Good News

I finally have good news to report. I just came home from looking at a subacute or medical rehab for my husband. He may be able to leave the hospital the earliest Friday or by Monday or Tuesday of next week. He still is very sick but he is doing SO MUCH BETTER then the doctors thought he would. I don't know how much function he will regain but he is still with us. He is totally yellow, skin and bones and half asleep most of the time but he is looking great to me! This rehab is an easy 20 minute drive from my house, and the dog will be able to visit with him! He has been in the hospital since May 30th and still has not been out of bed. He is being fitted for a brace and hopefully will be able to sit up and get out of bed soon. I never would have thought that I would be happy to see Bob in this shape but given what we thought was happening not too long ago I am very happy with his progress. I know that everyone prayers and good thoughts helped him so much. So far I have finished THREE pairs of socks since he was has been in the hospital. They are not my best work but they did keep me sane!!! I'll post a picture when I am not so tired.

Sat. June 17th

When I got to the hospital yesterday Bob was excited about going home. Someone had said something to Bob to make him think that he was going home in a day or so with a visiting nurse seeing him once a week to bring him meds. I was floored at the idea of taking care of him at his level of illness . I asked the nurse to see the charge doctor, no response, then his lunch came and it was a total mess and I just about lost it. Then I met the Chaplin who has been visiting Bob and also talking to me and shared my frustration with him. Evidently he was the person to talk to because within a few minutes all the people I had been asking to see were eager to see me! Basically, Bob's liver is continuing to fail. He is receiving aggressive IV treatment for the infection, and fluids etc. to keep him hydrated etc. to try to give his body a chance to recover as much liver function as possible. If the liver shows no improvement he may be moved to a Medical Rehab where he can be kept comfortable and it would be a more relaxed setting. Bob still feel that he has a "shot" at getting better and I want him to keep that hope. When I asked the liver Dr. what I could do to help his suggestion was to get him to eat and try to talk to him and keep him alert. Except for salty foods the Dr said bring in what he wants to eat. I ran out to a local restaurant and we had pizza for dinner last night. This is the first time he really ate anything! Steven visited yesterday and it was a difficult visit for both of them but hopefully the start of some type of healing. I am knitting constantly and watching more daytime TV then I ever thought possible. He plays with the remote constantly but all I insist on is no Jerry Springer type shows and all shows must at least be in English!!!

Thursday June 15th Update and secret pal gift

I have gotten so many letters, cards and messages from friends. I can't thank you all enough. I have not answered hardly anyone because all I do is go in to work for a few hours in the morning, then go to the hospital and home to sleep! It really has been a crazy ride the last few days. We have had conversations with three doctors in the last three days and ALL three gave us TOTALLY different information! I am going to ask to speak with the doctor who is the case manager and ask for clarification. Bob however looks much better and was finally moved from intensive care to a bed on a medical floor. He thinks he is better and is very irritated with me "for keeping him there!" I went my doctor today because I am still coughing and he was very upset by my blood pressure until I told him about Bob so he'll recheck me when things are calmer! I did come home to a delightful package from my secret pal. I really love Karma and do I need some GOOD KARMA now.

Monday June 12th

Caroline and I spent the day with Bob at the hospital. Although he is clinically worse he seemed better and more willing to talk, even complain a bit and ask for his cell phone! He is in end stage liver failure and they are talking about trying to transfer him to a hospital that specialized in this condition. No decisions have been made yet and we will be with him again on Tuesday.

Sunday June 11

Bob is still not showing any improvement. His liver continues to decline and in a few days he maybe beyond the point of being able to benefit from any treatment. I am becoming his health proxy on Monday and the doctor has asked me to try to think about what Bob would want in his last days. Bob asked me today to please just let him die then a few minutes later spoke about something in the future. My kids and I may need to make some hard decisions soon so please keep us in your prayers. Caroline is going to the hospital on Monday with me.

News from the Hospital

Hi, as soon as I finished writing the post this morning I got a call from the hospital and Bob pulled out his breathing tube last night and while they were trying to reconnect him they realized that he was breathing well on his own! They were shocked that he could tolerate it!!!!! The liver numbers are still very bad , the highest and worst they have been BUT they are getting bad slower then before SO MAYBE he can last longer on that crummy bit of functioning liver that he has. He is very confused and showing a much higher level of dementia then before so it really is a trip trying to keep him in bed and keep explaining why he can't go home and what happened! All he remembers is falling off the bus. Today is Knitting in Public Day so I did my part and knit at the hospital ALL day!

Catching up from wed.

Hi, I have not had time to respond to everyone's individual posts and messages but as soon as I have time I will. I slept at a friend's apartment in Brooklyn Thursday evening, and I have limited access to email at work and none at the hospital. The news about Bob is that his current condition has not gotten better but it is not worse. His liver is in such poor shape that he would be put on the list for a transplant if he were eligible. He is the yellowiest man I have ever seen and so swollen that he looks like he is oozing fluids. They are trying to wean him from the respirator with very limited success and are talking about doing a tracheostomy to provide breathing support and allow him to be able to speak and use his mouth. The abscess between the spine and thorax is doing better and the infection in his spine is responding to the treatment BUT his liver is so damaged from his hepatitis C from when he was 19. The intensive care doctor told me that the liver doctors give him 6 months to one year to live with the current liver functioning. Liver doctors have been telling him at his liver is terrible for years so who knows how tough he really is! I try to spend as much time as I can with him BUT I can't be there all day every day. I am going to knitting on Monday night at Barnes and Noble and I'm going to my support group on Wed. Night. I realized that I was getting to tired to function when I tried to tell a friend how to turn a sock and I could not remember the directions! I am almost finished with one sock from the current STR club colorway but I didn't use their pattern. I was working on a gray, blue and black sock but I needed to look at bright and cheerful colors.

Holding his own

I spent most of the day at the hospital with Bob today. They tried to take him off the ventilator for a few hours in the afternoon and he did well then got tired. The Dr. will try again Thursday. Both of my kids came in form New Jersey to visit him . The hospital is not close to where any of us live and it makes visiting hard. I got a lot of support from my kids and in my heart I know Bob did also. He had a very sweet and caring nurse which makes it much easier for me to leave him there.

No Good News Today

I went to the hospital today and found Bob back on a ventilator. They lost control of the bleeding on his surgical site and had to put a pressure bandage around his neck! His liver is failing so he is not clotting well and his lungs have fluid in them. They are doing everything they can and the doctors feel he has a chance. His kidneys need to remain strong but I am very fearful and sad.

An update on what's going on with me

No new projects, no nice pictures. My time is being taken up with my husband who is in the hospital. Bob went into the hospital a week ago and was transferred to a different hospital and had emergency surgery on Sat. He is very sick but made it through the operation and has been taken off the respirator. He continues to be very sick BUT he made it through the first 24 hours which were the most critical! I would have thought that I'd be getting lots of knitting done as I sit around but I just have not had the concentration! If you believe in prayer please keep Bob in your prayers. He has osteomylitis, a serious bone infection in his spine.