Miles to go...

I got to finally meet DrD yesterday. She is the brain injury guru around these parts and many others. In any job environment, there are always politics and disagreements. Hospitals are no better and in many cases worse. I am sure there are some of the same issues here, but one thing is not. There are no complaints or snarky comments about DrD. Every single staff member has nothing but wonderful things to say about her. They say she is dedicated. They say this is her life. They say she is amazing. They say she is the best. They say we are lucky to have her for a doctor. Today one nurse told me that she has seen anoxic brain injury patients be wheeled in here and then walk out, she says she had never seen that before. Sigh. So what does she have in plan for him? Well, she wishes he had gotten here sooner (don't we all??!) she has to counteract some bad habits that he has established and then she has to prepare him for treatment. He had been given nothing to help him relax, no muscle relaxers or anything, and after months of this with very little physical therapy, he is tense, he is tight, and is favoring certain positions. When he is moved or stretched it causes real and phantom pains that in turn cause him to withdraw or tighten further. The immediate goal is to relax his limbs, muscles and his brain. Let him feel the simplicity of peace so that when they start the regime, he is in a place to venture out if he is able. From my understanding of brain injury, it can be very scary for them as they are trying to figure out how to respond. Their nerves and signals can misfire and send mixed messages. A simple touch on the arm, can be interpreted as pain in an injured brain. By relaxing him first it can make him feel less protective and more accepting of changes as they are introduced. The next big thing we found out is that he is going to be getting the defib (pacemaker like device) installed probably this week. The doctor does not want to start therapy on him only to have the ticker rebel like what started this whole mess. In the middle of typing this, we just had another visitor, a special eye doctor. She came to look at his eyes and see if there was any noticeable damage. We have noticed that bright light seems to bother him, and that he squints his right eye. After examining him she determined that the cardiac event caused a muscle contraction that has forced his right eye slightly off. The result? He is probably seeing double. This does explain the light, how he seems uncomfortable with rapid movements in front of him, and how he seems to furrow his brow and squint when trying to look at something. She said it can cause him headaches and confusion in addition to seeing double and being unable to focus.. They can give him a shot of botox in the eye to release the contraction. It will last up to 6 months and at the end of the time, his eye will either be retrained to stay in place or he could have another injection. Another thing to help him be in optimum fighting mode. Another new thing we have discovered since we have been here. I know it has been two weeks today and we were all hoping to see him jump right in. Throw some drugs at him and see if it works. A bit like getting to Christmas morning but finding you can't open your gifts until Valentine's day. Anticipation. Expectation. Rehabilitation. I will take the first two to get the third. We still don't know where we are headed. if it will work, but what we will know is that he was given the opportunity to succeed. That is really all I can ask for. DrD is in charge. I am grateful to finally have a guide on this journey. It has been a bit like being dropped in the middle of an unknown forest and trying to find your way out. I could see the sun overhead. I could feel the ground beneath my feet. My children were behind me asking "are we there yet?". There were no signs but I chose a path and committed to it. Now I have met up with someone who has travelled this path before. She doesn't know yet what obstacles may have fallen since the last time she travelled it, but she knows a few things to watch out for as we travel along. We have found a map, it is outdated and does not have all of our journey charted, but together we will add to it as we make this journey. We will stay the course, and find our way out no matter which path ends up taking us there..... "The woods are dark and deep, and I have miles to go before I sleep......."

I Wonder....

I Wonder......
When I was younger I believed, that dreams came true.
Now I wonder.
Cause' I've seen much more dark skies, than blue.
Now I wonder.

I keep on praying for a blue sky, I keep on searching through the rain.
I keep on thinking of the good times, will they ever come again?
Now I wonder.
Now I wonder.

They are starting slow with him, but they are starting. Unfortunately with one step forward there is always at least one step backwards. Today they discovered he has a UTI and they will have to give him IV antibiotics to clear it up. In the meantime they are still trying to decide what to do about the heart to make sure it is stable enough to go through the treatment. The defibrillator (pacemaker) is still on the table and the decision should be made in the next few days. He has been very stable these last months on his medication but they want to make sure it remains stable as he goes through the more aggressive therapies. It has been a tough week on the home front as well. This week in school is all about Dad. I knew there was a "date with dad" at the end of the week, but going into the week, I did not realize that the rest of the week would focus on it as well. I spoke to H in advance about "the date with dad, or other special person" and we talked about how much she will miss him. S offered to step in for him, and she is excited to take him to school and show him around, and have special time with him. The last two days we have not had as much enthusiasm. Her allergies are in full force and she has dark circles under her little eyes. She is sneezing all over the place and I can tell her little head is full. This only makes her more sensitive. I have watched the melancholy come back to her this week.At school there were stories about dad, sharing was about dad,journaling about dad, and stations that revolved around dad. It was a little too close to home this week and I could see her feeling it. I watched her become more clingy and fussier. I saw her gaze drift and knew in her mind she was a million miles away. I kept her busy this week, very busy. They had lots of things to do and look forward to but still there is always something missing, and no one is more aware of it than her. Then we have the other child, she is "lucky ladybug of the week" in her class, and she has patiently waited all school year for her turn. She is on cloud 9, she is so excited, and she has the whole routine all down pat. She knows what is going to happen at school, she knows she gets to share every day, and she is very focused. The first night she brought home the special ladybug backpack, I went into their room to check on them and make sure they were tucked in. I noticed that E was not in her bed. I first thought she was in with H, but after rooting around for her, a feeling of panic set in and I made a cursory check of H's bed to see if she was in with her sister. I could not find her there so I ran down to my room to check and see if she went to my bed. She was not there. I was really starting to feel the stress and ran back to the girls room to check again. I rechecked both girls beds, then started to search around the room. I finally got to the closet and found her there on the floor in her little footie jammies with her head on the ladybug backpack, sound asleep. I picked her up and carried her back to bed. In the morning I asked her what she was doing in the closet with the ladybug. She told me she was showing the ladybug her clothes so they could pick out her outfit for school. So on one hand I have this child. This sweet child who so patiently waited for her turn with the ladybug backpack. And on the other, I have the other child. Also sweet, but also sensitive. It has been another week of riding the roller coaster and trying to find a balance. I wonder when it will get easier.....

When I was younger I believed, that dreams came true.
Now I wonder.
Cause' I've seen much more dark skies, than blue.
Now I wonder.

I keep on praying for a blue sky, I keep on searching through the rain.
I keep on thinking of the good times, will they ever come again?
Now I wonder.
Now I wonder.

I keep on praying for a blue sky, I keep on searching through the rain.
I keep on thinking of the good times, will they ever come again?
Now I wonder.
Now I wonder.

When I was younger I believed, that I could win.
Now I wonder.
There was a time when you and I, walked hand & hand.
Now I wonder.

I keep on searching for the old me, I keep on thinking I can change.
I keep on hoping for a new day, will I ever feel the same?
Now I wonder.
Oh I wonder.
Now I wonder.

(Chris Issac)

Que Sera Sera......

I drove over to see him on Friday. S met me in Yuba City and took the girls back to her house so I could get on the road. I was able to spend Friday, Saturday and Sunday with him. His parents found a little apartment for us all to stay in, that is literally right next door the hospital. It is very nice to be able to step out for a few minutes and be right there. We are going at different times so that he continues to have visitors almost every day. I think last Monday was actually the first day since all of this began that someone was not with him. We all feel very close and protective of him. That day was a hard day for me. Knowing he was there, and I was here, but realistically I know that this is his time. That my presence there will not change change the outcome. There may be a time where I can affect things, but right now, it is his time. They have to figure him out and he has to figure them out. I am impressed by how much staff they have there. There are always people in and out. They have a set routine and schedule and they keep it moving. It is good for him, I think he needs a schedule. I am a huge believer in the schedule. I think it gives us security and makes us feel safe. I hope it does that for him now. They are working with a cardiologist to have him properly assessed before they start their regular drug and therapy routine. They want to make sure his heart is stable and he is in the best condition he can be in. We met with one of the speech therapists and she spent some time just talking with him and asking for small responses. I was able to take him outside and we found a lovely deck surrounded by greenery and a small creek running along the outside. We spent about 4 1/2 hours out there Sat, enjoying the lovely weather. E and J came up to visit us and spent some time with us outside visiting. It is always nice to have fresh eyes. It helps keep things in perspective. It helps validate our own feelings. It helps to digest what you see. I spent a good part of Sunday with him before heading back to pick up the girls and head home. I had two calls from the doctors today as they are working out his treatment plan. I know he is in a good place. I know he is in the best place for him right now. I am so glad for him to have this opportunity now. He deserves to have it. It is up to him now. Que Sera Sera, whatever will be, will be. The future is not ours to see, que sera sera........

Nothing Ever Changes, if Nothing Ever Changes...

That is a quote that A reminded me of today. So true. We have made big changes, and are hoping for big changes. Already there have been more changes in the last 24 hours than in the last 9 months. Changes with his treatment plan that is. They are calling in a cardiologist to do a work up on him and determine his his current cardiac health and status. He has also not had a cardiac consult since he left Chico in August. They want to do this in order to make sure he is in his best shape to withstand the aggressive drug and therapy plan that they are putting together. How wonderful. Finally some movement. Another question to have answered. Nothing ever changes, if nothing ever changes......

The Eagle has Landed!!!

Well we made it. We finally made it. I arrived here about an hour before he got here. When my feet touched the ground, I actually got a little weak in the knees. It was the adrenaline crash I think. It felt like such a big hurdle to have crossed. It was surreal that it had finally arrived. I met with the admissions coordinator and she congratulated me on a fight well fought. She told me that she had never seen it end this way before. She also suggested to me a new career in patient advocacy. She told me that she had seen many people become exhausted by the system and give in. She also reassured me that this was a place where they believed in aggressive treatment. They would try many things, and if something is not working they will scrap it and try something new. It felt really good to hear that. I also told her that I fought to get him here because he deserved the chance. The opportunity. That however this road ends, I have to be be right with him, and with his girls. I have to be able to look at them and know I did everything reasonably possible to bring their father back to them. That I provided to him every opportunity to succeed. I think these next weeks will be critical. They will finally be the ones that will give us answers. They whole staff seems to be very vested in their facility. They have also been encouraging and reassuring about the the program. DrD the director of the brain injury program will not be in until Wednesday and so these next days are just to let him adjust to his new environment. They will then be putting him through his paces, directing him through 3-4 therapies per day with drug stimulation therapy in addition to that. After we got him settled in his room, his things unpacked and all of the intake done, we had some special visitors. San Quentin has 8 dedicated beds in one of the wings of the facility. They keep it regularly staffed with correction officers on rotating shifts. A correction officer and their supervisor heard about him and wanted to come and pay their respects. They reassured us that they would make a point of checking in on him during every shift. It was a very emotional day, a day of changes. But it was finally change. Movement. A step forward. Towards what, we do not know, but it is a step.

Off to see the Wizard......

We are enroute! Transportation confirmed! I will meet him there! We're off to see the wizard....

For Reals this time...

Isn't that what you used to say when you were a kid? For reals. For Real. Really. They confirmed that his bed was open today. Kentfield was ready for him, but the transport company could not move him today. I offered to tether his chair into the bed of my truck. They did not seem to think this was a good idea. I suggested a little brisk air might perk him up, they offered that they had arranged transport for 9am tomorrow (Sat). It will make for a more hurried trip for me, I have to be back Sunday to get the girls ready for school Monday. I will at least be able to get him settled and meet the staff. Really it will be up to him after that anyway. I have been telling him, whispering in his ear, that he can rest now, but once he gets there it is time to work. This is it. His big chance. For reals this time....

Braxton Hicks...

Those false labor pains you can get when pregnant... They feel like the real thing, so much so that many an expectant mother has ended up at the hospital only to be turned away with the inevitable "false alarm". Braxton Hicks, false alarm....leads me to why I am sitting on my living room sofa instead of a hospital room in the bay area. I spent all evening getting ready for my trip, making plans for the girls, getting the house in order, doing the laundry, the dishes, writing out detailed daily activity logs, just make sure I had all the bases covered. I arranged for pick ups, drop offs and back ups. This morning I got up early to finish my orders, to pack the car and make sure I had my addresses and phone numbers at the ready. The girls were dressed, the lunches and backpacks packed and then I got the first call. "we may have a problem." There was some waiting, some phone calls back and forth before we finally got the official word for the day. The bed at Kentfield did not open today, so we go back to being on red alert. We are shooting for tomorrow, again. Hoping.

TOMORROW< CONFIRMED!

I just got a message that he moves tomorrow morning at 09:00am! They have scheduled transport to pick him up then and start the journey to Kentfield! I am moving forward with plans for the girl as I plan to stay with him thru Sunday. FINALLY! Tomorrow, Tomorrow, We'll move him tomorrow, we're only a day aaaawaaay......

Any day now....

The girls and I got back from our trip over to the coast. We had a really nice time. A pretty quiet time, but quiet is really what we needed. The first day we spent most of it hanging around the house and watching movies. H spiked a little fever and seemed tired but otherwise had no symptoms. She perked up by the next day and was racing around again by yesterday. Saturday brought our busiest day with time for shopping in Mendocino, an afternoon playing in the waves at Caspar and some scenic exploring in Little River. We were fortunate enough to stay in a lovely house in the Redwoods, and the kids had an amazing easter egg hunt in the midst of a small clearing surrounded by huge redwood trees, it was gorgeous and they had a great time running around trying to find all of the eggs. We got back last night to snow flurries. Just enough to be bothersome while I was trying to unload two kidlets and all of our stuff from the car, but by morning it was pretty much gone. The girls slept in a little this morning, and then we headed up to see him. He was tired when the girls were there and slept in his chair, they went home with Nana while I stayed with him for a few more hours. We got his hair cut and moustache groomed in anticipation of his big move.He woke up and we watched CSI and did our bills. I still take them with me every month and talk to him about the expenses as I write out the checks. We are literally waiting for the phone call. It can be any day now. As soon as a bed opens up he is moving. They have transport standing by. I have my bag packed and in the car. Any day now.....

Red Alert.....

This has been a crazy week. They all are it seems. Maybe that is just to be the way of our life for awhile longer. I finally got the long anticipated signed agreement to send him to Kentfield. Which was a huge relief, but it put us on red alert. Red alert because he is moving as soon as they have a bed available. I got the call on Monday that a bed might be available Wednesday and to be prepared in case. I frantically ran around trying to get all of my ducks in a row, while maintaining the girls regular schedule. S came up to stay with me for a couple of days so that I could get all of my orders out and the all the details worked out for the girls.I packed a bag and put it in the truck, much like when I was pregnant. The bag packed, waiting for the call. Ready to go at a moments notice. Of course when Wednesday rolls around, the bed is not available so he is not moving yet. The bag is still in the truck. When I spoke to the NCM she did not think it would be until the beginning of next week now that it is a holiday weekend. So I switched gears again, and kept to my original plan for Easter weekend. We came over to the coast with K & C. It was where we spent last Easter and several before that. I made sure the NCM had my contact information so that if anything changes, I can go off to Kentfield from here and meet up with him there. But for now we are here relaxing, remaining on red alert, but trying to give the girls a memory. A good memory. We are in a different place this year, as the memories are strong, and he is everywhere with us. The girls have been excited, wanting to come over, but still when I picked up H from school, after the big grins, there was a silence. H said "I really want to go to the beach, but it won't be the same without Daddy." No it won't, I agreed. He leaves such a big void, it hard not to step in it. You turn around and it is there. He makes everything fun, finds humor in everything. His mind is always working, it is hard to believe that it might not be working for him now. That he is not thinking ahead, trying to find his intro. We are here and he is there, and we miss him. It is good to be here, good to be away. It is raining and misty in the redwoods but we are all here together, playing games, kids piled up watching movies, cooking good food and enjoying each others company. I know this is where he would want us to be. We miss him, we are waiting. We are still on red alert...anytime now.