Spring 2011

Over the past several months, there have been some changes with John's treatment and care. We have moved into a sort of plateau in terms of vast changes in John's condition. Since June, 2009 we have been in a state of constant flux and chaos. When we weren't worried about John's immediate condition, we were worried about his care and when we weren't worried about his care we were worried about where we would move him next. Now our worry is about day to day details and the future. In the past, we were worried about facilities and the immediate future so typically, I would go out and survey different facilities and interview staff and try to narrow it down to a few choices and approach Holly with the best choices so that she would not be overwhelmed with making that decision in addition to trying to care for John 24 hours a day. Since October 2010, John has been at a nursing care facility that we chose as a result of him being discharged from the absolute last rehabilitation facility in Galveston, Texas.

I must say that we have been exceptionally fortunate in that John has been in some of the finest facilities available. A great example is that of TIRR which is currently providing treatment to Congresswoman Gabrielle Giffords who was shot in during a public event in January. She is from Arizona and of all the facilities in the United States, her physicians felt that TIRR was the best rehabilitation option. We happen to live in a city which houses the most cutting edge treatments for several maladies including cancer (M.D. Anderson) and luckily the most cutting edge cardiac care and of course, brain injury treatment such as TIRR and we are exceptionally lucky that John received treatment there not once, but twice.

I wish I could report better news about John and his progress. The facility which was providing hyperbaric treatments has since closed unexpectedly. We had seen some changes in John's condition and we were so hopeful for such a long time that it was extremely difficult to accept that we needed to look for nursing care placement. To be fair, we kept John in rehabilitation facilities for as long as we possibly could and we have actually heard from several health care professions that it's amazing that we were able to avoid the inevitable nursing care as long as we did.

We have been fortunate that even though John is in a nursing home, it's a clean, well-staffed facility with people who care. We are also fortunate that John and Holly were able to save some money throughout their marriage which allowed for payment of this facility pending approval of medicaid. We are currently still waiting for Medicaid to give us a response to our application. This has been a tedious process which I had mentioned before and my only hope is that if you are reading this, you never have to go through it. That being said, if you do have to go through it, email me if you need help! Although we tried to pick the best of the nursing care options available, John's family does not feel safe leaving him without extra help during the day and sometimes at night so they have made the decision to hire additional private help. Nursing care facilities aren't used to patients like John. The activities and care are geared toward much older, much less active residents. John is 41 years old and there aren't other residents his age at facility where he currently lives and, in fact, a lot of facilities won't take residents under the age of 55. We have consistently been correctly lead to facilities which have been perfect for John at the perfect time. I wish there were more options available in terms of advocacy but I believe that in this process, we can each be a bit more like John in terms of helping others and we hope to be a navigational option to others who might be going through a similar situation.

On the medicaid front...we have been submitting documents and resubmitting documents in the hope that John might get approved for medicaid and therefore relieve some financial stress from the family and set out some future goals to provide for his care for now and forever. While we still hope for miraculous recovery on a daily basis, we must maintain a modicum of realism and that means planning for every possible scenario. We have recently received great news in that we are close to the end of the medicaid approval process. This will help with nursing care costs as well as medication costs. John is reliant upon specific 24 hour care and medication as well as his feeding tube nutrition and we are hopeful that it will be approved soon and somewhat retroactive.

I want to apologize for not stating more clearly earlier that I wanted to make the blog a bit less active. I think with the amount of paperwork involved with medicaid and all of us trying to work and go about our day to day business, I have forgotten just how important it is to others to keep up with John's going's on. What I can say is that as major life events happen with John, you will read about them here first. I wish to also say from the bottom of my heart...and on behalf of all of John's family, we appreciate every thought, every prayer and every good wish you send our way. June 2, 2011 marks the 2 year anniversary of John's heart attack and the day that our lives changed inexorably. One thing that hasn't changed is the consistent love and support we feel from those who love John. Thank you from the bottom of our collective hearts.