Dar and I are so very fortunate to have two of the best doctors working for and doing everything they can for her. Doctors Doherty and Waters have been working so hard and so diligently on Dar's behalf it is amazing. These two not only have Dar as one of their patients but a whole hospital with patients in vey similar situations. Their hours are long, very long and the pressure must be crazy. Through it all they manage to keep me informed as to Dar's progress.
Doc Waters knows of my frustration in calling the hospital to get an update and has instructed me to "not" call during the week. I won't in most cases get an accurate or an update that will meet my standards. Not only are thes two doctors slammed most of the time, their support staff of nurses and "techs" are as well. I'm sure they would love to give me a play by play but they don't have the time nor is it right for me to expect them to. I know that if there is something I need to know or of they have a question, their going to call me.
Doc Waters has pledged herself to contact me as much as she can during the week, every other day or so. Sometimes it just does'nt work out. As I said they are both slammed.
I tell you these things so that you might understand that I like you sometimes am on the waiting end. Both doctors answer my emails, answer my questions and have been saints when it comes to Darlene. I do not receive info or intel unless it comes from one of these doctors, as it should be. When I get the information I do and will continue to pass it to you, it may just be longer in coming in the days and weeks ahead.
Doc D called me last Thursday and told me that Dar was looking beter than she had since her arrival back on the 6th of August. She also told me that she IS NOT READY to release Dar and infact wants to keep her another 3 weeks or so.
Doc D has been attending to the Baclofen pump and by all indications her effors are being rewarded Physical therapy has and is continuing to see the affects of the pump titrations. Doc D will continue to adjust as is needed.
Dar passed all three "blue dye" swallow test and is now with a deflated cuff in her trach 24/7, she also gets to use her speaking valve during the day.
This week Doc D is going to have another EEG done with regard to the Sub Clinical Siezures Dar was having, remember these are siezures you cannot see with the visual eye, they don't look like anything other than Dar is resting. The evidence is that Dar IS NOT her perky self.
Dar has her moments of Perk but they are not as they used to be and this is why both doctors are not ready to release Dar and indeed are still looking for ways to better bring Dar along.
The siezures and the brain bleed Dar experianced back in June really "kicked her in the butt", but we have no reason to think there was any lasting ill affects. It is just going to take lots of time.
I saw Dar on Sunday last and as doc D said she looked really good, just not her perky self. small smiles when Mav was mentioned, loves to play her "eye spy" game and doing everything she can to get well. Lots of sleep, lots of rest is what she needs, she has PT, OT, and Speech everyday. Sits in her chair we took down and is doing all that she can to get well.
Thats about all I can tell you to this point. Please understand it is not of my specific planning not to write, I am on the go from way before sunrise till way after sunset. Sometimes I even need to take just a bit of time for myself. I feel very guilty when I do but I have an ultimate responsibility to Darlene to do all that I can to protect her and care for her which sometimes means I have to take care of me. There is nothing I would not do nor nothing I would not give up to have her healthy and at home as she would like to be.
Until that happens, I will continue to fight the good fight, work hard and when an opportunity comes (scarse as they may be) for me to relax and get away, for what may be just a brief moment in time, I have to take it, guilt or no guilt. Dar needs me to stay on top of my game as well and not end up with a breakdown.
Until the next post please remember that we love you all and as "needed" information comes in I will pass it along. I am including my personal email so that if you would like to drop a note to me rather than leave a comment you may do so. Here it is..................
