Monday, May 16, 2011

Its getting better every day!

We are moving right along these days in Boston!!  Dad is consistantly making progress every day!  He is determined to do his best to get out of this place!!  The staff is amazing, and have really helped him come a long way!!

I mentioned in the earlier posts, Dad's love for Purell foot rubs....this is the face of a man completely content! 

 He is constantly giving me puppy dog eyes, begging me for foot rubs!  I have used my ability to rub feet as a bargaining chip!  He has to work for them! 

 He has to sit up as much as he can, and for as long as he can....we try and keep him occupied by playing an intense game of skip-bo! 

 And tic-tac toe!  He won every game and so got bored quick!

 He earned an extra long foot rub when he got out of the bed/chair and baby stepped to the real chair!  He did very well, and sat up for almost 3 hours the first time in this chair! 

Today has been an expeptional day!  He has been off of the ventilator 2 times for 3 hours each, and has sat up in a chair 2 times for 2 hours each!  He also......STOOD UP!!!  

He was a trooper!  They had him sit and then stand 3 times in a row, and he did GREAT!!  They will continue to work with him until he can walk the hall with a walker!! 

As soon as he is able to be off the ventilator for 24 hours, then he can move from the ICU and EAT!!!  We are at 8 today....with another try on the schedule for later tonight.  That means 12 today.....maybe 16 tomorrow and then hopefully by the end of the week.....24!!!!  We know he can do it!  He is being such a champ! 

Thank you all for your love and concern!  Dad loves when I read him the blog and all of your comments!  Thats what we do to help him pass some time in his chair!  


  1. Well, well , well, it looks as tho it won,t be long before you are ready to run a marathon,if you can those women in you life, rubbing your legs and getting you better. It was so nice to see some pictures, thanks to all of you out there from all of us out here. It looks as tho they are taking good care of you and that makes me feel alot better, I still wish you weren't so far away, but soon as you get back home you will probably get tired of all of us around. The weather took a turn for winter again, altho Kent said today that we weren't even near out of spring yet, so don't count out summer, those two days last week would almost spoil a person, well maybe by the end of this week it will be in the 70's again. Just listened to the news and they are saying that they wish it would stay cool so the snow doesn't melt to fast, which would be good if we don't want to float away in places. There was a big rock slide up between Alpine and Hoback on Sunday and no telling when that road will be open again, they said the ground was still moving so it was to dangerous to work on until the ground quits sliding. Well the radishes are just going great guns and I noticed tonight when I came home that the peas are sticking their heads through, I might have enough stuff to make a green salad for you when you get home if the sun would just come out. Well I guess it's time to quit for now I've been up to the hospital with Kent and Ardis most of the day, but all is well on that front also. She says she could sympathize with you and her's was just tiny compared to your's. O what scars you two will have to compare, I love you guys all of you out there more than you know, and miss you even more, get better soon and come home to us,
    tucker and I are going to hit the sack so will be back at you tomorrow with more garden news. Love ya, Love ya, Love ya! JoAnne

  2. Hello Hello! Just heard the good news about your talking and skyping the kids, what a wonderful way to start the day. Hope this finds all well again today, so you will be that much closer to coming home. I watched the news and it sounds as tho you might neeed an ark pretty soon, It's not bad out here, the little seeds in the garden are poking their heads out, I have peas now along with the radishes, I'll make a real salad before long. Be happy and keep up the good work, we are all looking forward to seeing youn soon. Love Ya ever so much. JoAnne

  3. Just wanted to share some information that some of the family may not be aware of. As some of you may know I have worked for Health and Welfare for almost 27 years. During most of that time I was the Bureau Chief for Facility Standards. The Bureau that I supervised licensed all of the Hospitals, Nursing Homes, Intermediate Care Facilities, Residential Care Facilies and Certified Family Homes in the state. We also did the national standards for certification for hospitals for their participation in Medicare and Medicaid. In addition I am a licensed Nursing Home Administrator and have held national positions that advised the feds on hospital and nursing home standards.

    After I visited with Barbara, I became concerned about Dave’s course of treatment and the negative outcomes that he was encountering. In visiting with Barbara I spoke with the ICU Doctor and with was referred to Dr Weiner who later called me. I told Dr Weiner who I was and shared with him my concerns about how Dave’s treatment or lack of it was going.

    There were two specific incidents that gave me real concern, the first was Dave’s lack of preparation to be transferred off the Intensive Care Unit to Spaulding Rehab. From a regulator perspective there was clearly inadequate Discharge Planning. From my perspective Dave would be a high risk patient that should have been followed more closely by his primary care physician or at least the attending physician at Spaulding Rehab.

    The second attempt at transfer is even more bizarre. He is almost unresponsive the evening before the transfer and yet we don’t check his CO2 levels and against his wives wishes we transfer anyway only to have him sent back to ICU. This is the second extreme example of lack of adequate discharge planning.

  4. I expressed this frustration to Dr Weiner and asked if we needed to have the hospitals Risk Management or Joint Commission on Accrediation of Hospitals come in and review the case. He told me that they had learned their lesson twice and that they would not be transferring him back to that unit and that they would watch the case closer.

    I further told him that it was extremely troubling to his family here in the west to have his wife expressing serious concerns and having nothing being done, ie, little or no progress, still on the vent after 40 days ongoing diariah, dizziness, lethargic etc. I told him that it is not uncommon when a patient has been in ICU for a long time to simply write them off, to cease aggressively trying to stop the negative outcomes. He assured me they had not given up. I said then when things are not working we need to see changes being made in the care plan in an attempt to gain a better out come. He assured me that they would respond more aggressively. I wanted to point out that he told me that Dave and his wife were team players, that they had been wonderful to work with and that his wife was his greatest advocate that she was there from early morning to late night doing everything she could to lift his spirits and advocate for his care, he couldn’t praise Dave and Barbara high enough, and he acknowledged the mistakes that had been made.

    We discussed Dave’s breathing, his weight loss, his diagnosis and his prognosis and a number of other issues.

    In the end he promised that he would not be sending Dave back to Spaulding Rehab.

    Now I see that they are again planning on sending him out to a rehab facility. From a professional regulator perspective this is an appropriate move. A rehab that specializes in lung removal or lung transplant will know far better how to help him rehab than the ICU. This may sound a little strange but in fact the Rehab Facility is better staffed and better training in Rehab than the ICU. They will know how far and how hard to push and when to let up and when to push again. They are trained in signs and symptoms that need to be immediately reported to his primary care physician.

    Dave wants and we all want him to come home. He will progress much faster if he gets appropriate treatment.

    The key to this transfer is to assure that a safe effective DISHCHARGE PLAN is put in place before he leaves the hospital and that it is followed to the letter. In the rehab facility. Development of the plan MUST include key players, the Doctors from the hospital, the attending physician from the rehab facility and the development of a care plan that has reasonable measurable outcomes. The measurable outcomes are critically important because if he is not meeting those outcomes what changes have to be made to assure his success.

  5. It is critical that his wife be as close to the facility as possible. This rehab facility is a glorified nursing home and care in that setting will in many ways depend on who is there, when they are there and their knowledge of the care plan. Barbara is our brightest hope, she understands care plans and knows when they are and when they are not being followed. Here is a case in point, last night Dave’s breathing became labored, Barbara immediately told them that he was having trouble and that his legs were more swollen than they had been in the past and that she thought he was water retention that was causing the problem. They took immediate action and stopped him from being put back in ICU. Barbara has gained enough experience so that she knows when things are not right and we need to be supporting her.

    Here is another thought, when Dave comes home Barbara will be his first line of defense against relapse and re-hospitalization. Having her there and advocating for him will be critical in his ongoing recovery both in Boston and here at home.

    Back to a quality care plan, I believe it would be helpful if the family knew what the care plan was and could encourage Dave when they visit with him, it also gives us more eyes and ears if it is failing.

    Our ability to act together as his family is critical to his success, if you have problems or animosity put it aside until we have him better and here at home. He needs us as a unified team pulling together in unison for his success. His Doctors believe he has some significant depression, cards letters and phone call can really help with this. If you call him and I hope you do be upbeat, no complaints, concerns or squabbling.

    Your welcome to call me if you have questions about what I have wrote, 320-3149.

    I have been in daily contact with Dave, Barbara and on occasion his physicians. If you want more detailed information I will be posting it on my Face Book website and your all welcome to access it.

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