Long time, no write. Well, I am back in Fort Worth although I can not tell you that leaving was an easy thing to do. While Grammie is doing better than she was when I had arrived, she is still far from recovery. In fact, in some ways we took steps back instead of forward. The good news is that her head is healing. Her staples have all been removed and the only vestage of a head injury is a scab which is about to fall off. The damage inside is more difficult to visualize but based on her return (the number of body functions and abilities she had that she has regained) I have to think she is recovering there as well.
The trouble for Grammie has been back pain from a compression fracture on her spine. It started to decline the day before I arrived in Carlinville and only seemed to get worse from there. Just like with a kiddo, the difficulty was in assessing how much pain she truly had. In her post fall fog one has to wonder how much pain is reality and how much is for effect. I mean no disrepsect with this statement but it is something that must be surmised because the treatment of the pain will have a significant effect on the length of time that it will take her to recover. It could even jeapordize her ability to recover at all. You see, the more we mask her pain with narcotics the less she will improve. In fact, she will likely decline in the short term. She will not be able to do the things she needs to recover in a drug induced fog.
I first began to question the intensity of her pain in earnest on Monday morning as she met with the speech therapist. When asked she described her pain as a 10 on a scale of 1 to 10. While I have no doubt that she was enduring pain, I would expect her to be doubling over in pain if that were the case. Instead she sat quietly and politely. There was no wincing, no grimacing, no outward sign of pain. It just did not seem to add up. My concerns were bolstered as I watched her talk to others. One moment she would tell people she was in extreme pain and a few minutes later she would tell me she was groggy but so thankful she was out of pain.
In the end, no one wants her to be in pain and, whether we like it or not, she is now under some pretty strong narcotics. They are in the process of dialing them back to achieve some balance of pain relief and sanity but anyone that has been there before knows, that is a fine line.
The funny thing is that this is all just a mask for a problem which we are yet to deal with. Blame it on what you want but the big problem to me is that we have not dealt with the source of the pain. We have been trying to get a procedure scheduled for her which could alleviate the pain almost immediately but due to a variety of factors we just haven't been able to get the ball rolling. It is frustrating. I am hopeful that with Grammie's physician back in town we will see this move forward quickly. At the very least, we need to be discussing this procedure and that is yet to happen.
I hate to wait. I did not like it in pediatric oncology and I don't like it here. The problem is that in pediatrics the answer was never much more than a day away at worst (other than scan results) but here I am going on the better part of a week and feel like I have no answers. It is not that I think her physician is bad or unresponsive. It is just the system.
Bottom line, I hated to leave her. I did not want her to have to suffer alone and it brought tears to my eyes to walk out yesterday afternoon. I had to get home to watch the kiddos as Lynley prepares to leave town.
It is just not fair. I wish I could bring Grammie here were she could be close to us but I know that is nearly impossible.
Once again, I find myself with plenty of purpose but no answers.