Hope everyone you are all well.
Dear Family and Friends,
Today was the most exciting day in months! Bob took his first steps! He was at the parallel bars with the therapist close to him. Holding on to the parallel bars, he was able to lift his right foot a tiny bit and stepped forward about 1/2 inch, then his left foot and so on for about two feet! The look of joy on his face was so wonderful to see. I was right behind him with the wheelchair in case he fell. It was just fantastic! He was so tired after that session, took a real good nap before lunch; he is really progressing.
I need to address an issue some of you may not be aware of. Several people have mentioned or e-mailed that Bob had a stroke--he never did have a stroke. It was a very serious staph infection that killed him twice the first day he was in the hospital. He was resuscitated both times but for several days it was touch and go. He was also given too much of a "relaxing drug" that put him into the coma initially. Ten days into the hospital stay he died from a massive heart attack and was resuscitated again. He was in ICU most of the five weeks and one day when he kind of uttered the word "home". He was able to whisper a little and could shake his head up and down. I asked him if he wanted to go home and he shook his head "yes". His eyes were also partially open and would track me and others around the room. We felt that he could understand most of what we said and responded to questions with an up and down nod when appropriate.
He had x-rays and MRI's almost every morning and I was always told that there was no evidence of stroke or brain damage. At the beginning we were encouraged to pull life support, but as he began to open his eyes and track us, it would have been a tough decision. He did have blood clots in both upper arms.
He went in on October 13th and came home to Home Hospice on November 18th. I was told that he had two days to live, at most three. The first several days it was tough going but I could see a tiny bit of improvement most every day. On Thanksgiving morning I heard him say "Hon" out loud; that was a real step forward. His voice and speech have continued to improve to where he is almost normal.
The first three-four months were very exhausting for him--and me!---but the progression was so encouraging. He started moving fingers, toes, hands, feet, then arms and legs. Then one day he shrugged his entire torso a minuscule bit! Every new movement gave me (and others) the strength to continue caring for him.
Hospice provided wonderful aides and therapists and once they realized he really was going forward, they were even more helpful and encouraging. The "Exercise Brigade" (volunteers from church, the neighborhood, family and friends) were here almost every day to work with his arms and legs, then sitting up, getting into the hoyer and sling and a lot of encouragement to move and strengthen muscles as much as possible. The first week of April he was upgraded to Home Health Care and that new group of aides and therapists were very aggressive with body movement and building strength. On May 6th he went into the Acute Rehab Unit at the Auburn Regional Medical Center (in the Auburn hospital) and it has been uphill since then. He has been there three weeks and will probably be there another two or three weeks. He really pushes himself so there are times he is very exhausted, but the results are positive.
Tomorrow Hospice is coming to remove the bed and air mattress, oxygen pump and bottles, suction machine, feeding pump, hoyer and sling. It will be so good to have those reminders gone. Our game room will now be the master bedroom. Climbing stairs is probably a long way off, but he is so determined, who knows!
I spend several hours with him at the rehab unit every day and stay overnight two or three times a week. He is busy with two or three therapists every morning and early afternoon but the rest of the day and evenings really drag for him. I would like to stay there more but there is much to do to ready the house for him. There will be an inspection before they let him come home!!
Forgive me for not answering your cards, calls, e-mails, etc. I am so busy when I am not napping. My health needs to be better because when Bob comes home there will still be a lot of care needed. I don't expect anyone to remember that I still have Chronic Fatigue Syndrome and Meinier's Disease, both issues requiring a lot of sleep. Sleep is the only way I can ward them off. I have experienced a few of both these last months and have been at the edge of incidents most of the time. To keep them from going into full attacks, I require a lot of sleep and naps, which I am getting now.! When I am home, I am sleeping a lot. Several times when I have been sleeping someone rings the doorbell once or twice and by the time I groggily realize that the bell (or telephone) is not part of my dream and I grope for my robe and slippers and plod my way to the door---When I open the door, no one is there!! Please, please, if you find it is necessary to see me, wait for me to answer! It is so frustrating to go through this. I am so exhausted that I shake for several minutes when being awakened from a sound sleep. I would prefer to not have visitors at this time, but if it is an emergency, please wait until I answer. I need to be as well as possible when Bob gets home. You can probably reach me most readily at the Rehab Unit. I have a bed in Bob's room (very comfortable, by the way!) But don't call during "Jeopardy" or a Mariner's game!!!
Several people have asked how they can help me--at this time the very best way to help me is to visit, call or write Bob. He is at The Acute Rehab Unit
Room # 480, bed # 2
The Auburn Regional Medical Center
202 North Division Street
Auburn, WA 98001-4908
With gas at such a premium and the extra drive to Auburn, I realize the visits to Bob are more difficult, but they would be much appreciated. Thank you to all of you who have been to see him, he enjoys visitors so much. He tells me about the visits several times.
Also several people have asked when they can visit us--as of right now any overnight company would be too exhausting. Probably no house guests for a year or so would be best depending on how Bob progresses and my stamina holds up. We need to get our
lives back to some sense of normalcy.
I must also mention all the wonderful food that was delivered to my doorstep for many months, Thank you Carol Nohavac, Karen Dare and Amy Klisky, for all the phone calls and organization, you took a lot of stress out of my life!
I think I have covered everything! If you are still reading this, thank you for everything!! I will continue with updates when the computer cooperates----