Today, he got to have "real" food! If you want to call Mac and Cheese real. He wasnt entirely thrilled by it, but he did get to chase it down with some chocolate ice cream!! Later, for dinner he got to have chicken noodle soup and a grilled cheese sandwich! I can only imagine the joy!!
Dad is a little hard to cheer up lately! He doesn't realize how well he is doing, and so he can't see his own progress! Any words of encouragement would be apprecaited!!
We love you Dad!! You have no idea how amazing you are doing!! Keep it up and we will BBQ for your b-day! :)
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.
ReplyDeleteAfter 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.
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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.
ReplyDeleteI 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.
Thank you uncle john for the info. Your background and knowledge of the issues at hand is a great tool in the tool box. Please continue to do all that is possible on this end to get him home safe. We love and appreciate all of you and thank all of you individually and collectively for your efforts. To all please continue to use this blog to post updates and comments in the future. We love you dad.
ReplyDeleteDavid max