Tough Days

I apologize for the long gap between posts, but between moving, work and trying to get Judi stable, my cup runneth over in a large way.

Yes, we did finally move into the condo.  We are still dealing with lots of stuff in boxes, but for the most part we have settled in.  Judi seems to like the new digs and it is a lot easier on me (just having the washer and dryer on the ground floor is a huge plus).  Several people helped an awful lot and I worked my brother, his wife and Jessica hard.  A special thanx to Kim Cassara who spent practically her entire Memorial Day weekend getting all the cabinets organized.  Everyone that visits seems to like the place and it is slowly, but surely starting to become home.  The condo is off Augusta West Parkway (behind the ice rink) and if you are interested, the address is:

1207 Brookstone Way
Augusta, GA 30909

I'll do my best to stay up beat, but Judi is not doing well.  Up until a couple of weeks ago, she was doing pretty well (excluding "evil Judi") and I had hoped she was going to make it without "tanking" like she has done in the past when the bone flap was removed.  Unfortunately, she has gone downhill fast and much worse than previous times.  She is practically unable to swallow and is no longer able to eat real food and can only manage a few sips of water from a spoon before giving up.  I have had to shift her back to tube feeding to get her nutrition and fluids.  Her head stays down 95% of the time and she shows very little interest in anything around her.  She also has periodic episodes where she just loses control of her body and shakes, kicks her chair, grabs her PEG tube, etc.  It is like she is totally out of control and in a highly agitated state.  I have had her scanned to make sure nothing has changed physically in her head and everything is as expected based on her surgery.  She can't (or won't) assist in transferring any more and I essentially have to pick her up to move her.  We can't do this for long (her caretaker is already struggling) because it will take a toll on her body (and likely mine) to pick her up repeatedly.  It won't be long before we are back to a lift to be able to move her safely.  She thrashes around at night and continuously make sounds, so I am back in the recliner trying to sleep again.  I never really get much sleep since I always seem to have one eye or ear focused on her.  This is the same woman that just a couple of months ago was advancing rapidly.  She was eating on her own and we were discussing moving to foods that she would have to chew significantly to eat.  She loved to watch TV and laughed at even the subtlest of humor.  She was interacting well with others around her and we were considering getting her a powered chair because she was doing so well.  I am very afraid she will get deeply depressed and give up totally.  Judi is a very strong woman, but you have to focus that strength in the right direction.  If she is working against you, that strength can make life very difficult.

We went to the Shepherd Center in Atlanta Friday to see her brain injury specialist.  We are going to try a few things, but we both agreed that we need to get something back in her head ASAP (prosthesis, bone graft, ??).  My search for the right plastic surgeon continues and so far I haven't had much luck.  We are scheduled to meet with the plastic surgeon that supports Shepherd (Arthur Simon) and I hope he can give me the insight I am looking for or turn me on to someone that can.  I am also trying to get some info from a couple of other facilities that come highly recommended in the area of plastic surgery.  I had hoped that I could have her surgery done at MCG with a different plastic surgeon than before, but I don't think that is going to be possible.  Her neurosurgeon is concerned about the doctor to doctor relationship since Dr Ritter (MCG plastic surgeon) did the surgery with him last time.  I don't like the way Dr Ritter treated Judi when we went back with the prosthesis issue and it was his work that had to be removed.  Why would I have him do it again?  I'll admit it ticks me off that it is the doctor relationship that is more important than doing what the patient/family wants.  MCG talks a big line about "patient centered care," but it seems Judi's needs come second in this case.  Soooo, we will likely be going to University, or out of town to have her next surgery done.

She is back in therapy at the pool and she still enjoys it a great deal.  I can't say enough about that program.  They have gone out of their way to help Judi get back in the groove and she is doing well.  She continues to get more and more movement of her left leg in the water.  I think she also enjoys the "chick time" with the team that works with her.  We also have a sign language specialist/special education teacher working with Judi.  Unfortunately she was just getting started when Judi started going down hill.  Hopefully we can get Judi back on track soon and take advantage of this effort.  She suffered a head injury when she was in high school and relates extremely well with Judi.  She is a special lady and I have a good feeling about her.  I think she is another one of those special people God has brought into our lives for a reason.

I think that brings us up to date.  I wish I had some better news, but it is what it is.  I am struggling to stay positive and I can't describe how devastated I am over this.  I have never been this tired physically, mentally or emotionally.  I had hoped back in April that all of the surgeries were behind us and we were ready to begin a new journey, but we are starting all over again for all practical purposes.  I know that God has a purpose in all of this and I continue to cling to the simple statement that "God does not make mistakes."

I would once again remind all of you out there to take advantage of the time you have today because tomorrow is not guaranteed.  Please keep us in your prayers.

Steve