Day 23: New Day New Room- Thursday April 5, 2012

So we moved to a new room today while they paint the original room. It is lovely and fresh and new,... But we did get spoiled with the extra space in the old room (table and chairs, room for a cot, room for our stuff....the support team has stuff, too!) But.... We are so grateful to be at Barrows, the little niceties are clearly secondary. So far... We are VERY impressed with Barrow!

They are very action-oriented.... None of this hurry up and wait stuff that we have been dealing with....nothing is waiting for someone else to take care of it. Today Scott dressed himself with some assistive devices, is wearing regular clothes now, brushed his teeth, climbed 4 stairs, walked with his walker, is walking too (with my assistance) and using the bathroom now.... and had lots of assessments.... A very big and busy day.... Literally, non-stop. We love it, though! That is what we are here for... action, effort, and functional improvement! We thought there would be a few rest breaks during the day, and we thought that the evenings would be his own time...kinda' rest and recovery time.... But the evenings have been busy and scheduled, too...showers, etc. are done at night, since the mornings and days are so full and busy.

Getting dressed for the day.

Brushing his teeth on his own for the first time since the accident.

Today's PT session... trying out the walker. 

One thing that has been nice tonight.... We actually have been able to squeeze a little nap in for Scott. He really needed it! He was falling asleep during dinner. And.... He is sleeping very soundly....no moving, no tugging, no jumping up and out of bed....just resting soundly....without medications..... A temporary treat? Or is he resting better because he has had so much physical and cognitive exercise today? Or because he is down to one tube to deal with (his trach)? Or... A combination??? Don't know, but I have to tell you, he looks so peaceful when he is sleeping now, which feels so much better than the fitful sleeping! Plus.... If he becomes safe during his sleep, then his support system can also get some sleep at nights.

Currently, we have been alternating.... When Mickey is here, Ashley takes the first part of the evening, then Mickey comes at 3 am to relieve her....when I am here, we alternate nights, so.... Every other night, one of us goes to Scashley's house and gets a full night's sleep and makes food for the next day. The other one stays up with Scott all night. And.... It has been constant work all night long. There is no rest! It may be harder to stay awake if there is not something to physically be doing constantly throughout the night, but it sure will feel good to only have to worry about being there and awake for his nightly bathroom needs. Typically, he is pretty disoriented at night, so when he feels the urging to go to the bathroom, he darts up and out of bed. If you are not right there and fully awake to respond with cat-like reactions, he will try to get up on his own and then be on the floor.... But... If we block the side of the bed with a chair, or wrap an arm around a leg so we feel when he moves, then.... We could actually get a litte shut eye during the night, and maybe... Just maybe not feel so foggy-headed and exhausted the next day.... And... Actually, we think our all-nighters may be coming to an end anyway.... Once he is free from all of his tubes (trach being the only one left at this point),then they can put a "cage" on his bed, so he can't climb out at night. Then we could be like mother's of newborns.... And only have to wake up a couple of times during the night.

 Oh.... Before I forget.... We are going to have to put off visitors for another week.... Sorry!!! We were really hoping that we would be ready this week. Scott really loves visitors! And we do, too! But..... The transition has been busier and more draining than we anticipated. Also, so far when visitors have come, they have not been able to spend much time...constant interruptions because there is always something going on. We hate to have you make the effort to come all the way down here for 5 minutes of interrupted time with him.... Doesn't make sense. We hate to keep having delays with visitors. Know it makes us sad.... We know you understand ... Our decisions have to be based on what if best for Scott and his recovery.

 Oh,.... And for visitors.... I forgot to give directions (Sorry, Megan!.... Attribute the oversight to lack of sleep!) so... When you come...park in the 3rd Ave. Garage. Then go to the glass doors on the 2nd floor. There should be a sign that says Neuro Rehab near the door. Immediately upon entering the glass doors, turn left, and proceed down the long hall until the end, which is where neuro rehab is. There is a large sign. You will need to ring the doorbell, and the doors will be opened for you. There is a nurses station immediately upon entering you may ask how to get to Scott's room. They will take you back. He is in a secured area for now. Currently in room 19, but that will likely change. Oh... And his legal name is Michael Scott Moore, so.... On paper he is known by Michael Moore. If there is no one at the first nurses station, walk a few feet down the hall to the right and there is a busier nurses staition...someone should always be there at the second station....and it is perfectly okay for you to walk down there.

Oh yea,... I saw Steve Young yesterday! He was walking into Neuro Rehab as Jolyn and I were walking out. I knew it had to be him or some really good look-alike, but I didn't ask. Today, we were talking to another family who is here with their 15 year old son. The father is on the board of some charities that are associated with Steve Young's foundation, so he was coming in to see that family and son. There were able to verify that my eyes wern't deceiving me. Good to know that age hasn't robbed me everything YET!

We are told that the trach will likely come out on less than a week...maybe 3-4 days, even. Tomorrow, they will downsize the trach to a smaller trach (either a Shiley 6 or a Jackson 5.... I'm voting for the Jackson 5, purely on name alone.... Maybe it will give him an awesomer singing voice!)... Then they will cap it. If he is able to breathe and handle secretions independently with it capped, they will take it out completely. It really intrigues me that the trach and the PEG (feeding tube) require surgery to put them in, but do not require surgery to take them out and seal them up! They have decided to leave the feeding tube out because he as been eating so well. They will be supplementing his diet as they see fit. We are grateful for one less tube to worry about unplugging or pulling on. They put some gauze over them and they heal over. I can imagine the scar is sizeable, but.... Amazing that they do not need to close up a sizeable and deep hole. It's great that he doesn't have to have more surgery, though!

Lately, I seem to be out of the room when the doctors, etc come in.... I go down the hall to make a phone call because I can't get reception in the room and the opthalmologist comes it.... I missed several therapies today because it was my turn to go home and sleep. I slept 11.5 hours! Yikes! A lot in one day, but not so much if you consider it is a 2 day total! But that meant I missed a LOT this morning! This place hops! I was able to sit in on the neuropsychology evaluation today as they tested various aspects of his memory. He still is not oriented to time, especially the year. He has been getting the month correct lately, though. He was pretty impressive with remembering numbers. She said a series of numbers and asked him to repeat them back to her. He was able to repeat a string of 5 numbers back to her. When she said a string of numbers and asked him to repeat them to her backwards, he was able remember and repeat 4 numbers backward. He was also able to follow commands well, even when given 3 commands at once. He was able to point at the ceiling, open his mouth, and close his eyes at once with a single command. That is a definite improvement for Scott. One thing we have noticed.....He repeats a lot of what we say, so we have to be careful how we phrase questions. Otherwise, we may think he is really answering our question when he is, in acutality, just repeating what we ask in a statement format.

Well, Jolyn left today... Thanks, Jolyn, for all of your help! And now I am off to pick up Scott's brother, Ryan, from the airport... So... I'll talk to your tomorrow!

Love to all!

Patti