Day 25 – Grayson’s Condition

Dear family and friends

First, a correction on yesterday's blog – Grayson was moved out of the ICU on Tuesday, as I said in my Day 23 entry. Yesterday I must have been tired, because I said that we moved out again. Losing track of time, combined with losing sleep, must be a sign of old age!

Today was a hard day.

Medically Grayson remains stable. Today there was an accident during his physical therapy, and one of his toes was injured, causing him a fair amount of pain and distress. He is quite large, as I have mentioned before. And even though he has lost roughly 20 pounds since admission, he still weighs about 230. Working with him to sit up requires 3+ people pulling and working hard to hold him in place. In trying to do so today, one of his toes got under a chair leg, and got caught. I not only felt bad for Grayson, but for the lead therapist who was mortified, and who left the room in tears.

We were not actually with Grayson until 6:00 PM. His Aunt stayed with him today while we were touring Long Term Acute Care Facilities. Grayson will be moved out of his current hospital to one of these long term hospitals in the next few days. We will visit a few more before we make our decision, but the closest is about 10 miles away. While we were quite impressed with the quality of the care in these facilities, and their commitment to moving the patients along on their journey, the facilities are certainly more crowded. Not that Grayson cares at the moment, but privacy is a lot more difficult with 2 or 3 patients in a room. Fortunately, the staff was both qualified and caring, the physical therapy facilities were good, and one of the places smelled clean and nice – not like your typical nursing home.

For those interested, here is what we have learned regarding the continuum of medical care facilities:

Shirt Term Acute Care – a.k.a. the traditional hospital. Typically performs major surgeries, critical care and emergency care.

Long Term Acute Care (LTAC) – A fully functional hospital for acute care requiring stays of 3 weeks or longer. Typically has facilities for minor surgery, and a range of physical and occupational therapies.

Sub-Acute Care – A facility for patients that require a multi-disciplined approach to a complex medical problem, but whose condition does not require acute care.

Skilled Nursing Facilities (SNF) – The traditional nursing home or rest home, for patients that need rehabilitation or medical care that is of a lesser intensity than provided at a hospital.

So, Grayson is moving from Short Term Acute, to Long Term Acute. The goal from LTAC is to then move to a residential rehabilitation facility so that he me build life skills and become all that his new capabilities will allow.

Many of you have asked me how long it will take Grayson to return to normal. The fact is that we need to find what the new "normal" is, and truthfully, we don't know what his outcome will be. Based on the type of injury, and the level of damage, we are reasonable certain that the Grayson that we all knew is gone. Short of a miracle (and we are still praying!) there is a range of possibility for his outcome. At the high end, we are hoping that we can get him to a point that he may someday be able to live independently. At the low end, he could be institutionalized for the rest of his life. Between those extremes are assisted living, small group homes, large group homes, etc. As with all extremes, the answer is more likely to be in the middle somewhere. It has been suggested that we may wish to start playing kindergarten level games with him when he is lucid.

This is the burden we have been carrying for the past few weeks. We have not given up hope, and all miracles are welcome here – encouraged in fact! Grayson is blessed with a strong body and youth. He is also blessed with an increasing body of research into the repair of brain injury. All of this could contribute to a more satisfactory outcome. While odds may be stacked against him, I have faith that we will be guided to the best possible outcome.

I apologize that this posting has been so long, but I thought it was time you all knew just how difficult the road ahead for Grayson is. Hopefully this puts some context around our daily emotional roller coaster. Keep praying!

Pax!

Brant and Regina