Today brought a doctor appointment that at least Udell and I were anxiously waiting for. Today we saw the Pediatric Psychiatrist. She is the one that deals with the anxiety and depression meds. We NEEDED a change. The anxieties that Shannon has dealt with, have really diminished to next to nothing. But the depression has increased being manifested in many ways but especially through anger and frustration. Shannon's moods can change on a dime! She is able to stay focused enough when with friends or most company, she is able to be happy and in control. She will make it well known that she hates her hair and Primary Childrens Hospital and most of the doctors and nurses. Her anger is evident when she tells anyone about what she can't do, such as rollerblading and driving. When we went to see the doctor today, she was upset about most any subject that was talked about. I am always impressed at how professionals that work with these kinds of situations can stay so "unruffled" even after multiple verbal attacks. To Shannon, she is still the Shannon she remembers--everything that she can remember doing before, she believes she still can do. However, the things that are really hard, she just won't do saying she can, but won't prove it either. I think we would all feel the same way...the last time you remember, you were doing all these things just fine and now people are telling you that you can't do them. It just doesn't make sense. No wonder that she is so angry. And since it is her parents, therapists, doctors and nurses trying to get her to do the things she thinks she can still do, and won't let her do the things she loves like rollerblading, the anger is directed at all of us. It is very typical of TBI patients, to not accept/recognize their deficits for quite a while. So the changes to the meds were made but as with all mental health types of medications, it will take a while before we see the best results.
Because having her phone and computer was so important to Shannon and because she was willing to use them appropriately, we decided that would be a good thing, even if she did face natural consequences from saying things in a way that might be offensive. She has restrictions on them and so she has lost the privilege of using the phone for a couple of days. She also has seen some of the natural consequences although I am not sure the significance of those consequences is evident to her at this time. But she has been down right mean to a couple of people on the phone and they weren't very happy about it. But one good thing is that she doesn't get mad about her phone and her computer anymore because she has them at her discretion.
It is really a struggle as Shannon's parents. We are definitely caught in the middle. We have doctors and therapists telling us how cautious we must be and the things we shouldn't allow Shannon to do yet. And then we have some friends that see her who think because she looks fine and seems to do fine, that she shouldn't have the limitations. And we witness both sides...a good example of that is Shannon's balance. It definitely does better some days than others. Some days we can see it change from bad to good just depending on what's going on. There are some things that although Shannon could possible do them, there is a risk being taken not knowing if she has the ability to really catch herself if she started to fall. Today I was with Shannon walking through Gateway, waiting for Udell to have my phone fixed. She was walking so unbalanced that I told her that if a cop stopped her because he thought she might have been drinking, I was just going to keep on walking! She didn't think that was too funny--especially since she thought she was walking straight as an arrow!
The doctors are so concerned for many reasons. First, once you have had a TBI, you are 3 times more likely to get another one and the recovery results are significantly less than the first time. Once you have had a 2nd TBI, you are 10 times more likely to have another brain injury. Those aren't very good odds. The brain is still healing and will be for a very long time. The fluids around the brain have not totally settled, leaving the brain more mobile and easier to injure. The doctors have reason to be concerned. Yet, we need Shannon to work towards independence as much as possible. We have given her a lot more freedom around the house but are still very cautious when we go out.
Yesterday, I got an insight into some of the challenges yet ahead. The therapist asked Shannon to read from her ACT prep book and answer some of the questions. Her purpose in this was not to say that Shannon didn't know the material but rather to see what her attention level was and the amount of endurance she has in cognitive learning. Shannon started to read and read just 3 or 4 minutes and then slammed the book down, saying she already knew all that stuff so why should she have to be doing what they were doing. We talked and talked with her to no avail so we shifted gears and suggested we read a novel; again the purpose was to see about endurance and attention. With several stops and many cues to keep going, Shannon refused to go further after about 7-8 minutes. The therapist asked her questions about the story and Shannon could only answer a couple of them. She was angry and very upset. The therapist pointed out to me that every time they have done something that is very hard for Shannon, that she can't stick with it for very long. It is just too hard still. It will still come, but it looks like it is going to be slower than we had thought. It breaks our hearts because we know that Shannon knew all these things and that she used to be able to do them. The brain just takes a much longer time to heal than a broken arm or even a broken femur!
We have been told that the middle part of the recovery from a TBI was the worst. That was hard to imagine when we were sitting in the PICU watching the numbers and praying that they wouldn't go too high. That was certainly stressful, but I have to say that the middle part, is much more stressful.
On Friday last week, we got word from Regence Blue Cross that they were not going to cover any more therapies as inpatient. Basically they were saying that they felt that Shannon was capable of doing all her therapies on an outpatient basis. That would mean traveling to Salt Lake every day, doing therapies there and then traveling home. Shannon hasn't made the ride to Salt Lake yet without falling asleep in the car and being very tired when she gets there. She has such a long way to go and all the medical doctors are saying that the therapies are medically necessary. So we immediately started the appeals process as well as contacted the Utah Insurance Commission is hopes that they could help us. The critical issue here is that the window of best opportunity for recovery is now and it needs to be the intense therapy the doctors have prescribed. They have expediated the appeal and hence, it would probably be about 14 days where normally it takes 4-6 weeks. I can't understand Regence thinking...maybe it is just because they don't want to pay because they certainly aren't looking at the best interest of the patient. (Outpatient therapy is only covered up to $1500 a year.) It's just crazy....and very stressful to have to deal with all of that when we need to be focusing on Shannon and her recovery. Can I just say..."stupid insurance!"
Gratefully, we continue to have such great support from ward members, friends and family. True, there are not as many around as in the beginning, but those most dear to us have never left our side nor have they stopped praying for us. Those prayers are what sustain us the most. We know that one day we will be able to look back on this experience and recognize all that we have learned from it. We know that although Shannon can't imagine it now at this point, but she too, will one day look back and realize how much she gained from the experience. It's keeping that in mind and the eternal perspective that is difficult when the day to day challenges keep facing us. It helps us when we look back and remember all the miracles that have taken places and all the people that Shannon has influenced along the way. There's that most important word AGAIN...
remember!! Just got to do it...it will keep us going!