2007 April 22 Update

Tried to post this last night, but ran into problems and had to reboot. Got too tired and waited til morning:
April 22, 2007

Well, Today was a very different day than yesterday. Brian is completely alert and with us. He was very sad and frustrated when I first arrived this morning as he could not say much of anything except “yeah” and “well”. He could not move his right arm/shoulder/chest or foot or calf or lip very well. His anguish would have broken anyone’s heart.

Then physical therapy came. He got into a chair with some help and they showed us some exercises to do. He did great. His right big toe is working and his hamstring and quad are great. However, his ankle/foot and the calf are not working. This will make walking a challenge. We have some exercises in which I help his foot move to try to send the signal back up to the brain to work. We did not meet with occupational therapy today, which should help us with his arm/upper body, we are told. Speech therapy went very interesting. By the end, Brian was repeating lots of sounds and words. He can read and point to the picture describing the word, etc. They practiced some “automatic” speech – saying things that we are so used to saying, we don’t have to think about them – counting to 10, days of the week, etc. He tried to hum happy birthday and didn’t get the melody. However, when singing happy birthday, the melody came, but the words were very jumbled. She said this is a great exercise because the melody is on the right side of the brain and the words can come automatically with the melody. So, we practiced singing again later in the day. He got most of the songs out. Also, she told him to listen to music a lot and sing along or hum along without even thinking about it – even if the words came out wrong. We practiced LOTS of things. I would say words and he would repeat. He is GREAT at repeating. They gave us a little typewriter thing and he can type his words okay. Anyway, I just thought it went great. By the end of the day, he was trying to crack little jokes (by getting one or two key words out) and letting us know he wants ice cream, or has to pee or whatever. He is off all the IV’s and the catheter, etc.

Physical Therapy told me that they thought Brian was a great candidate for rehabilitation. I thought “no, duh” But, what they meant is that they think he will need to go from here (neurosciences) to in-patient rehab. He needs to learn to use his right arm and leg in order to walk and take care of himself. In patient rehab is basically just hanging out in your room or else totally rehab – hours a day; physical, occupational, speech, whatever. This is pretty much all he is doing now anyway. His vitals and stats are stable, all they do is measure his intake and output and the various therapies come work with him – but only for 20 minutes at a time or so. So, we have to work this out with insurance, but that is probably the next step for Brian. They said, “you realize you can’t really take care of him at home until he is more rehabilitated?” I said, yes. They said they didn’t think outpatient rehab was a good idea for him until he gets more abilities. Anyway, let’s hope and pray that our insurance covers in-patient rehab. Not all cover this. We feel that this is a good thing. We would do this in Illinois, probably depending on our next steps here with respect to the treatment of the cancer.

Tomorrow we should meet back up with Edwards’ team to discuss how the surgery went – MRI was yesterday to measure the resection and to discuss next steps. They are still talking about this cyber knife radio surgery and we have to learn more about that and see if Brian is a candidate. We should also get some pathology information, we think. That is still our NUMBER ONE prayer request.

Completely unrelated, Jan (Brian’s mom) had more issues with her atrial fibrillation today. She went to the ER again and this time she was admitted. She is getting all kinds of tests and stuff done tomorrow and they are going to keep messing with her medication. I guess this is relatively common, but it is just a matter of trying different meds and finding the dose and meds that works. She just didn’t get a chance to figure it out before they came to California. Anyway, pray for Jan as well.

So, today was a good day, except for Jan’s issues. Very emotional and moving and still frustrating at times, but Brian is encouraged. He was in such a good mood when I left and not tired and groggy and not that discouraged. He is my hero (we practiced that word a lot today) He asked for a dictionary or some sort of word book to practice his speech. He was all hooked up with his I-Pod (which he can say very well) and looks great. He feels dirty and wants to shower badly. I cleaned him up today, but it is not the same. Anyway, praises and thanksgiving for a good day.

Okay, I am babbling. I am tired and I want to get to the hospital early tomorrow not knowing what time the doctors get there on Mondays.

KEEP BELIEVING

Angie, Brian, Gavin and Grant O’Neill