8-11-2009-from PBA web board:
Had to withdraw from the world series of bowling. My Mother had a brain aneurysm(Subarachnoid hemorrhage) and went unconscious 8:30 Tuesday Morning 8-11-09. My Stepfather saved her by administrating CPR until the paramedics arrived. I flew immediately home and do not know what will be the outcome after her aneurysm was clipped in a 6 hour surgery. She is in a coma and it could be a few days or weeks depending upon God's choice.Therapy will take months and months if God wants her to stay with us. As far as the World Series of Bowling, It is not a priority. I already lost my Father in 1992 and this is my only Mother. I will do all I can to be here for her and for my stepfather of who I am indebted to for his Love of my Mom and at least giving her a chance.They are best friends and do everything together. Until I know more that is all I can say. Thanks for all your support and well wishes and prayers in advance. We need them as this is a life changing situation for myself and family.
All the best to all of you and one day at a time for me.
8-14-2009 off PBA web board:
First I want to thank each and everyone of you for the kind thoughts, well wishes, thoughtfulness and most of all the prayers. This is the toughest thing I have ever had to deal with along with losing my Father in 1992. Obviously I will not be bowling today and do not know yet if at all.We have to take this hour by hour, day to day. I will have to fly back to Detroit to get all my items from my room,my truck, equipment and drive back to Baltimore eventually. This weekend is the key. 3 days and Mom has show some improvement. The main concern to the doctors is infection. Still unconscious. There is WAY more to this that's going on I will not get into. Just remember though she is in God's hands and we are all hopeful. I appreciate all the responses and I ,as always, appreciate all the great fans and wonderful people and the support.
8-19-2009- off PBA web boards:
Quick update... I will soon try to get updates on my website when time permits but I know some would want to know since it's been one week. My Mother had a little better day today. Still semi unconscious but opening her eyes at times. It's a one hour at a time one day at a time situation and a long road ahead of my stepfather and I. There is the pneumonia that was caused from aspirating, the fever from it, the brain still swollen and draining as well as a bunch of other complications. Once again thank you all for the prayers,well wishes and emails I have received. We really appreciate the kindness and compassion very much. All the best to everyone
2 weeks after-- 8-25-2009: Mom is still unconscious from the blood particles in the brain fluid.She took a few steps backward from last week. The docs are doing a lumbar puncture to relieve the pressure. She has had a few of these to drain but they are doing a permanent one soon. She also will get a trach for breathing as well as getting a feeding tube in her stomach. This is to get the hoses out of her mouth and nose. The pneumonia is still persistent also but the last antibiotic seems to be helping more. She isn't coughing as much. We are at a loss but remain positive for the outcome. This could take weeks to see some improvement. It's one day at a time for us and we thank everyone for the love, support, compassion and most the prayers for Mom's well being.
Yesterday the Doctors did a LP ( Lumbar puncture) to relieve the pressure build up on the brain as well as to drain the blood particles that remain. Also done was a feeding tube in the stomach as well as a Tracheotomy for breathing as well as to get all the tubes out of her mouth and nose. I found links on this and it's a scary situation. http://en.wikipedia.org/wiki/Subarachnoid_hemorrhage. and http://www.bafound.org/info/subarachnoid.php
Mom had a stage 4 sub-arachnoid hemorrhage
Today was somewhat better. Not great but since it's been 3 days since the Lumbar Puncture the cerebral fluid is clearing up. Still some blood in it but more of a yellowish look instead of murky red. The pneumonia is still persistent.Her breathing is better with the trach. We got some open eyes at times and a little movement. This is heartbreaking as Mom was so active for a 73 year old and now helpless.
Over the weekend there was some more hope. Mom opened her eyes more as well as followed voices when her name was called. The LP was taken out but the fluid built up again. There were some slight movements of her head, legs and right arm. The pressure from the fluid build up remains a problem and the pneumonia seems to be dissipating.Monday more chest x-rays, a ct scan and a spinal tap. There was a small blood clot in the fluid that released through the spinal tap so we'll see if this makes any changes. Still not knowing the unknown of what is in her head hurts us. Time and patience is all we can hope for as well as prayers from all.
9-2-2009- Today they are doing a MRI to look deeper into why her cerebral fluid isn't flowing from the head to the body. It's built up again and yesterday very little response. Thursday a permanent shunt will be placed to help in the aid of the cerebral fluid.
9-4 2009-- Well a day after the shunt and not much going on. We did see some response right after the surgery Thurs evening but Friday it was like those hopes went the other way. The docs are going to adjust the shunt to increase the cerebral fluid so hopefully this weekend we see some responses to our touch as well as more to sound.
9-6-2009-- Sat was better. mom was more alert so the fluid was draining better. Still really no movement on right side but occasionally a stretch of her feet. Some head movement and she followed a little with her eyes to sound.
Sunday evening things were slower. Sat they did alot of tests and had her breathing on her own without the ventilator so that's why Sun was slower. She was tired.
Wed-Sept 9th -one month 1 day- Back on the ventilator because of fluid building around her lungs. The docs are in between on her getting too much fluid or not enough. Her proteins have been low since she was admitted and this is another complication they are dealing with as well as a urinary trac infection. They did the muscular test and there is communication to the nerves and muscles from the back of the brain. Whether that connects t the cerebellum so she has control of this is unknown.She is still in and out of sleeping and things are slow. Any movement or reflex is good but everyday I go I tickle her feet to try to get a reaction if she is sleeping. Just to see this reaction would be awesome. They will move but I want her to open her eyes and look at me on the reaction......so damn hard.....
I also have to thank ALL the doctors, nurses and special services people at Johns Hopkins Bayview. These people have been so wonderful with their service in all aspects. I ask ALOT of questions and they are right on it with answers. Their caring of my Mother has been fantastic. Thanks You all.
9-11-09- Another complication comes about. Mom's lungs are filing with fluid. From being in bed for a month her proteins are low and her body isn't flushing fluids. Another possible surgery to have drains put in to remove the fluid.One complication after another.. They want to rehabilitate her but first must ween her off the ventilator but can't because of the fluid.
9-14-09----So the weekend was up and down. Sat Mom was out of it and not responding to much to anything. It happens from what the docs tell us. Sunday and Monday totally different. She was awake for the most part for hours at a time. Eyes followed movement. Left leg stretched in and out at times. Still no following commands like move you finger etc. no reaction to me tickling her foot either like I do each day. The lungs have basically cleared, small air pocket in lung is gone, urinary tract infection gone, breathed Sunday night on her own till Monday morning then back on Ventilator. Protein levels are building back up but it takes time. We'll see how this week goes and they may move her to rehab finally. I want her to react to commands though but hopefully the brain connects in time...how much.. no one knows.
9-15---5 weeks----Today Mom was tired. Less responsive. I did find out she basically was initiating the breathing for 21 hours last night,which is good and why she is much more tired. Today they took the larger 6cm trach tube out and put in a 4cm. This will make her breath with more intent to strengthen her diaphragm.The physical therapists also came in again for 45 minutes to get her stretched and initiate muscle movement. No responsive movement to commands.No response to tickling or moving her foot either .
9-16---They jumped the gun...Mom had a tough time with the smaller trac tube so back to the larger one. 3 weeks wasn't enough. Early today My stepdad said she was pretty alert and following with her eyes. As the day went on and she struggled breathing she got tired. When I got there she was asleep. No response of movement to commands.No response to tickling or moving her foot again either.. So on to tomorrow....
9-18--- With the bigger trac in Mom was breathing without struggle and initiating all the breathing. The Ventilator is still on 50% but at 10 breaths per minute. She is in the 20-28 per min with very little help.So both Thurs and Fri Mom was more alert. Theresa ,the one nurse said she pinched Mom on arm and Mom 'mouthed" ouch....The therapist also said she mouthed HI but when they were working her muscles and tendons out Mom didn't help them and they moved her. Maybe in time she will help with the movements. I got there after the morning workout and Mom was tired. It doesn't take much to wear her out.
Friday stepdad Jerry and I were working her arms out just moving them for her and there is a "main line" for blood in her right arm. Jerry moved her arm and something pinched Mom and she got a frown on her face and "mouthed" OUCH...I saw it and was like wow this is good finally. I have heard things but saw this. She was more alert both days so we will see how the weekend goes. Also the therapists got her in a "medical" chair and had her sitting.Still not moving anything on command and no reaction to moving her foot when I tickle it ..
9-19 sat and 9-20sun--Sat was hell. Mom was struggling to breath. The respiratory and doctors had to work on this for 12 hours to get her stable. For some reason the carbon dioxide was not expelling from her at a good rate. This left her lethargic and out of it. Breaths were short and choppy. Very hard to see this......
So Sunday 180 deg change. They got the respiratory thing figured out. Mom was alert, following people turning her head and eyes and moving her right arm finally a little. Also a big surprise was her comprehending us with mouthed answers!! Big small step so to speak. I turned to her staring at me surprising and said "you scared me mom" "what are you looking at" she smiled and mouthed "you". Also Dana asked her how she felt. She mouthed "I feel fine". I tickled her foot and she looked at me and mouthed "stop". There were a few more answers like the paper I put in front of her that read "do you love me" ? Her eyes went back and forth reading and figuring this out and she mouthed"Yes" !!! so small steps but hopefully this is a start...A good Sunday.
Mon Sept 21- Mom was tired and not quite as alert as on Sunday and the same on tuesday. The Therapists worked her muscles and actually sat her up. She had a hard time holding her head up but did try. After the 40 min sessions she was tired. Slow progress but much better .
Wed Sept 23rd- Today was better then the 20th. The docs gave her some medicine to wake her up to be alert during the day and to sleep at night. Mom mouthed to the doctors good morning after they said that to her. She was mouthing answers to most questions. I need to learn to read lips. She said a few long sentences to respond to a question but I didn't get it. She has been trying to adjust her self in bed. That's very hard since its been 44 days in bed. She tries... She also mouthed to me after I asked her is she was ok "I feel fine" and " my back hurts" (she had back surgery 3 years ago) So these are awesome signs ! Little by little and she is really surprising the doctors from what she has been through. She smiled a little and also mouthed back to me "I Love you too"
Also on Thurs Sept 24 ( my Birthday) Mom is being moved out of the Neurology ICU to the geriatric rehabilitation center at Johns Hopkins !! Great B-Day present !! Still one day at a time and this is a long long journey.
Fri/sat/sun--Ok so the doctors decided NOT to Move Mom from the ICU because her lungs still were not capable of having the ventilator lowered.She was a little more "quiet" but still answering questions which is fantastic. I had to go to Salisbury on Sat. night to be inducted into the MD State USBC Hall of Fame and it was very hard to speak of my parents and what Mom is going through and not having her and Jerry there with me.
Monday Sept 28th. My Mom's Mother's Birthday and YES they moved Mom to the geriatrics rehabilitation center. This is the first stage of a long journey back to normalcy. They are going to first ween her off the ventilator step by step and it could take a week or 2. It's going to take awhile and Patience is a must but the first stage has started.
Tuesday sept 29th -7 weeks- Mom is doing well. The doctors are very surprised on her progress she has made. It's still a long way to go and there are still little complications. Weening her off the ventilator and getting her now moving arms and legs stronger is the next step. She is very week but is comprehending some commands and answering questions. Her lungs still have some fluid in them and getting them stronger is a very slow process.She has been alert during the last days and takes little naps . The therapists had her sitting up and giving her commands to move her feet and hands and she did well. She held her head up while sitting also which she couldn't do last week.. one day at a time !
wed/thurs/fri oct 1-2-3---This week has been a trying one. Ups and downs all week. Mom is alert at times and answers questions,moves her left hand and grabs when asked. The right side is still very affected bad. Little movement but there is firing in her right arm and hand so it's better. It will take time for all this to connect and hopefully it gradually does. I think she is becoming more aware of the situation to a small degree. I told her what happened and I got a frown like what are you talking about or what do you mean. I think in some way she is aware she can't move and at times she might be depressed. There are still issues with her lungs and the doctors are monitoring her blood pressure with the meds as well as the interaction with her heart medicine. The lungs are and have been treated with diuretic medicine. I still feel helpless and it hurts watching an active woman try to sit up ( the therapists help keep her stable) It's going to take time..alot of time and I keep telling her over and over it's up to her to work hard and help the therapists when they work with her. Whether she understands this I am not sure....
10-6-tuesday- 8 weeks since initial hemorrhage... Not a good start. Mom's BP went crazy. The fluid came back in her lungs and there was some pulmonary edema also. They had to bag her to get O2 in her faster then the machine . So eventually as like before it's all in the adjustments between all the different meds to balance everything. The brain plays tricks so to speak on someone who's balances are messed up.
10-7- Wed- 180 degree turn. Balance was restored for now. Alert, answering questions, watching tv, moving legs and arms a little and even getting stronger in her right arm which has been pretty limp. I ask her to push my hand with her left (like arm wrestling hold) since she has been moving this arm I have been doing this daily just to feel. She is laying in bed and I can feel the "push" against my arm. Little more each day. Also the therapists had her sit up again today in bed. She moved her leg to a command. It's gonna take 6 weeks about to ween off the respirator and then more time to get strength going. One day at a time....
thur 8th/fri 9th/sat 10th---The rest of this week has been pretty good so far. The Docs seem to have the meds and diuretics and well as the fluids under control. Mom was tired from the therapists but she sat up in bed and then sat with no help for like 10 min. More leg movement too as well as her arms. They took out the main line in her right arm because there was some possibility of infection from being in to long. Friday and sat there was more movement but she was tired fro the therapist working on her for 45 min.. On Sat My uncle Don from Texas flew in to see his sister. Also my Aunt Cathy, Uncle Bobby and wife Donna, Uncle Buddy, Jerry , Dana and I were in the room. So with all of us there Mom was really interacting answering questions, remembering a little bit of things etc. She still can't speak because of the trac and vent but you can read her lips. It was probably one of the best days we have seen and great timing to keep even more hope and possibilities of better then thought of recovery for the initial hemorrhage. Mom is really surprising all of us. Everyone is different and there is still a long road ahead. She know she needs to work hard and after mouthing "I want to get out of here" she might be realizing some really bad happened to her. We just need to be patient and keep her spirits up as the depression can set in being more alert now of her not being able to do the things she used to do right now .One day at a time and each day I hope I see more improvement..BTW Now when I tickle her toes when she is awake it distracts her and she looks at me like what are you doing...LOL..This upcoming week they will try to get the vent weening going since her lungs are almost clear.
10-11-09-Sunday. Mom watched the ravens play (and lose) on Sunday. Jerry and her watched and I asked her about what she thought and she gave me the disjointedness look..and a frown...
10/12/13 Mon/Tues mom's white count got high again into the 18/19 thousand range. The docs don't know why but they started her on antibiotics again . So now there will be more fluid retention. She was still alert and aware and considering it's 9 weeks since the initial hemorrhage she is doing pretty good. She moves and is restless and wants to get out of there. Since the white count was high there is no way of trying to see if she can breath on her own. They will try Thursday.
10-15-18 No go on the attempt to see if Mom can breath on her own for a bit. White blood counts high. More la-sics and different antibiotics. The weekend was pretty good again. Mom has been alert still with periods of sleep. She gets tired easily. Jerry brought a 1lb weight so she can work her arms. She know exactly what it was and used it a little. We are also trying to work her legs using a little resistance making her pull her leg up and push against us. She understands commands and moves whatever we ask of her. Be it that she is weak it doesn't take long for her to tire.
On Sunday Mom watched the Ravens on tv. Her favorite player Matt Stover was signed to the colts and when the new guy missed for the win Mom wondered where Matt was....he would have made it she said...
She has also been put into a medical geriatric chair to get her sitting up as to get her diaphragm working better. Laying in a bed for 10 weeks and not sitting has taken it's toll.
10-19- Mom had visitors today. Her brother Carl and his son Cory came up. She knew them and hadn't seen Cory for along time and mouthed his name ! Long term memory still is kicking in. Short term not so much but that will take time.
Also Dr. Christmas came by. Dr. Christmas helped my Mom back in 1999-2002 with her Mother (my grandmother)when she got sick. It was great to see Mom smile and recollect as Dr. Christmas spoke to her . Mom remembered. Although it was a sad time and my Mom gave 5 years of her life to help her own mother back then , Dr. Christmas was a huge help to my Mother and Jerry with her expertise and care for my grandmother. I had never met her before but heard alot about her. I appreciated her coming up to see and chat with Mom.
Mom also was sitting in the medical chair again for a few hours. Wednesday they will attempt to see if Mom can breath on her own for a minute or so..Amazing to read back and 1 month ago Mom was barely awake and not even following commands. Now BTW I tickle her foot she looks at me moves her foot and mouths stop with a dirty look !!!
10-20- 10 weeks --Family meeting with Myself and Jerry with the doctors and OT ( occupational therapy) and PT (physical therapy). Went over all that's happened and where all will lead. There is no time line really it's up to how Mom progresses and the weaning off the ventilator could take 6-8 weeks more.. The PT and OT stopped working with Mom after the first 2 weeks of being admitted to the geriatric unit. as she was deemed not progressing to the parameters stated by the law. So Jerry and I have been doing some arm and leg work with Mom plus she has been "awakening" more in the last 3 weeks. SO I had them come to the room and I did my thing asking Mom to pick her leg up ( she is in a medical geriatric chair for 3-5 hours a day) and place it in my hand--she did. I then asked her to bring it up to her chest-she did- then push against me for resistance on the way down--she did. Jerry gave her a chap stix and she herself put it on her lips.The OT and PT were surprised as Mom wouldn't do much for them before and were the things they were looking for. Comprehension and connecting the command to the muscles with the brain. They asked her to wiggle herself at the hips to adjust herself in the chair- she did make the attempt but the torso is so weak from being in bed 70 days basically. They then got her to stand up almost and with alot of their help but Mom was trying and smiling on the way up !! It doesn't take much and Mom gets very tired. After another hour the Vent therapist came in with the Dr and they ran some "weaning" test on her. Mom did breath without the vent for a minute or two. Her O2 levels were good, heart rate was a stationary 70, she needed to get a 200 level of oxygen on a deep breath but got a 140. So all in all today was a wonderful remarkable day !
week of 10-21-10-25 Sunday
Pretty good week ! Mom was tired alot but the OT and PT came in just about everyday to work with her. Jerry and I have been doing little exercises with her on her hands , arms and legs. I got her a squeeze ball for hand strength. She has been in a medical chair at a minimum 4 hours a day and thins is helping with her breathing. Sunday the OT came in and we played cards. Mom could add the totals up, knew who won, shuffled the cards ( slowly at that ) dealt them etc. good day. Mentally other then short term she seems capable of doing some things. I gave her her hand held poker game and she knew immediately how to play it like she used to but more slowly but grasped it well.One day at a time one week at a time.
Monday oct 26- Today vent rehab began....they took Mom off of the vent for 15 minutes to breath on her own. She passed and also blew a 407 on a deep breath. We normally take in 200 on a normal breath. So good stuff. Lungs are clear, BP has been good 120's over 70's, oxeygen 100 %. The OT and PT ladies came in and had her try to stand up ( with their guidance and help) 4 times up and down.
Tuesday oct 27th 11 weeks....Today 1/2 hour off the vent wore her out but she did well. Wed 1 hour. This is like starting over again to breath. The OP therapists also had mom flip over coins, arrange them and then count and add up the totals. Took some time but she did well at it. Actually she had a time picking up the pennies off the table so what does she do? slides them to the edge and grabs it and then flips it. ! Priceless ! Mom also stood up somewhat ( with help) again. It's like re learning everything BUT she is doing well. She gets aggravated she just can't do stuff but I think she is understanding something happened to her....
Wed Oct 28th and Thurs Oct 29th- Wed 1 hour off the vent and 2 hours off on Thursday ! Wonderful progress and again surprising everyone. Mom is very very tired after the sessions though. Imagine yourself you've been in bed for 9-10 weeks and a machine has been breathing for you then your taken off it. It's like running a marathon.The OT and PT therapists also have been working with Mom doing some muscle work and thinking stuff. Mom gets frustrated but I keep reiterating this will take some time and you have to work hard.
Fri Oct 30/sat Oct 31---4 hours off on Friday and sat 8 hours off !!! No problems with the weening. They double everyday so Sunday could be interesting. Mom was tired by hour 6 or so but did a remarkable job ! So far so good. Don't know how long this will take but the process is moving quicker then we thought and Mom's strength is coming along. It's amazing to think during the last month how far she has progressed and to thing 2 months ago we were not sure what any outcome would be....
Sunday nov 1 and Monday Nov 2---well 16 hours off the ventilator and Mom did well. She was tired late in the early evening but did well. Mom and Jerry watched the Ravens spank Denver and when I got there she said they did well !
Monday 24 hours off is the goal and she was doing fine today so tonight when she sleeps will be a test......The Ot and PT therapists came in and worked on Mom. Doing some leg work and trying to get her to stand. I got there after I had a dental appointment but Jerry said she did well. Still a long way to go and Tues is 3 months....so for what we thought we may have left from the initial hemorrhage and the damage from the blood in her brain, the coma as well as the aspirating and pneumonia in her lungs for weeks now she is doing remarkable to say the least and we are getting some of the ol' Mom back with her sarcastic looks and stuff she says. Still a long road but so far so surprising !!
Monday and Tuesday Nov 2-3- Well so far so good as of Tuesday evening. Mom was off the vent since 8:40 am Monday morn. When I left the hospital at 5 pm it was 32 hours off. She was very tired as it's alot of work to breath. The OP and PT worked a little with her also. She also was put in a medical chair to sit her up for a few hours again. This has been an ongoing thing as sitting up helps build her diaphragm muscles. My uncle bob ( Mom's brother) came up to visit as he does every week as well as my Dad's youngest brother, Don and my Aunt Betty. They were also surprised knowing how bad this initially was and to see her alert and responding was great. Unfortunately she was super tired and not as attentive as in previous days. By the was this was 3 months after the initial hemorrhage.
Wed and thurs. Wed Nov 4th was my Father's 82nd birthday. Hard to believe that it's been almost 18years since his passing. Mom remembered the date and who's b-day it was . Mom was off the vent for like 2 days but they decided that she will go on it at night for 8 hours and off for 16. Her blood oxygen levels were ok but they know she can be weened. Now it's just getting her stronger. This weening will take 4-6 weeks and for her to regain strength will take many months if not years. She gets frustrated that she can't get up and go but we tell her all the time it will take time and one day at a time. It's been remarkable her progress but a long road still..
fri-tues- Mom still sitting up in med chair for a few hours a day. She has had her speaking valve in also. Been quite agitated at times but also in good spirits at time. Part of the brain re connecting. Stomach still is distended somewhat and Dr. Forti told me they were gonna do a colon cleansing to help with the distention.. Mom also has been eating jello, pudding and some other soft foods at time. Things taste weird to her as she said. Watched the ravens get beat on sunday ...not happy...lol
Wednesday nov 11th. Today wasn't so good. Talked to the doctors and Mom was agitated and pulling hoses and fidgeting with everything. Her stomach is really distended and they are fighting this. She was talkative but said some weird things. The got a CT scan of her stomach as well as her head just to see if anything is going on with both. No exercising today as she was also lethargic and not feeling well. The bad days and good days continue.....
Thurs Nov 12- Talked to the nurse and Vent nurse. Got there after the Dr's left. They said today not so good. Back on the vent all day just for a day. Stomach is distended and the CT scan showed something internally not right. So tomm I will check in with the doctors. Not to talkative and lethargic all day according to the nurses.
Friday Nov 13- I got indicted into the Greater Baltimore Bowling Association's Hall of Fame. Again like the MD state hall both Mom and Jerry were not there and it was very hard to speak. I missed them there....
Sat evening Mom was pretty talkative and in ok spirits.. Since her stomach is distended and there is a small blockage in the lower intestine they have her back on the vent. 2 steps forward 3 back...
Sunday even worse. Very lethargic again and slow on response. I will find out today what is going on and what can be done with this blockage that's not allowing her to go and keeping her blown up
They tried a cleansing for her system as well as some other things but we'll see . Evidently Mom had some issues I did not know about with her stomach....with the aneurysm and being tube fed for 3 plus months thins is somewhat normal but hopefully it's just a intestine that's flipped.
Monday Nov 16- Well talked to the docs in the early afternoon. No ileus (part of the intestine just not moving food through). So they actually got her stomach down by getting things moving. Dr Forti told me she was doing OP and PT and going outside later. I got there after six pm and Mom was in good spirits and her stomach was way down . She felt a ton better and looked really good. Alert, responsive and talkative.
wed/thurs-- Mom's Stomach started to blow up again but she was still feeling ok and doing her OT and PT stuff with the therapists. I have been going up to see her in the evenings now as I am practicing a bit more. I call the docs to get updates. She went outside a few days also with Jerry and she told me she enjoyed that ! The docs are giving her stuff every other day to help with the intestinal trouble and trying to regulate it to keep her stomach from bloating.
Friday Nov 21 2009- Mom had a good week. I talked to Dr. Greenough and he informed me that they would regulate the "go lightly" liquid medicine for her intestines. He said she just isn't moving things but hopefully as she becomes more active so with they. Mom was asleep when I got there at 5:30. I asked her of her day. She remembered (I already had talked to the Dr, respiratory and nurse) and went through her day with me. She said she went outside in the wheelchair with Jerry's help, went to therapy downstairs, they made her stand and try to walk , did arm and leg stuff also. She said an hour of it which is what I found out. Mom was tired but remembered for the most part what happened from her " very long long day" as she said.
Nov-22-24- Weekend was ok. Stomach still distended and Mom didn't do any therapy. Talked to the Dr.Forti and because her stomach is still distended they will be giving her more 'go lightly' to help. There may be some coincidence with her thyroid issues Mom has had for a number of years which is connecting to this stomach issue. They are checking on this.Hopefully this week the therapists will get her moving more as too many days in bed will not help. I will work her legs and arms in the evenings to go along with what they do. Hopefully Jerry is doing small things with her during the day.This I don't know as it's up to me to get her progressing. He'll do what he has to I guess. (which is why I don't go during the day because of his lack of involvement and disposition and snapping at me for working Mom. I snapped back and now stay away and let him do whatever it is he does which before was just sitting there for 8 hours.) I'll do my part as in the long run with my sister being in Texas and Jerry being 71 This will be on my shoulders. Since I haven't been going during the day the last 2 weeks I have not see much progression so I still think Jerry needs to get involved (with exercises like the therapists told him to 6 weeks ago)or it will take longer for her to get out of there.This has nothing to do with the past and before Mom's aneurysm as he was/is a godsend to Mom and me. This is about NOW and the future and I will not be told what I can't do for her whether she likes it or doesn't by him. Only the direction coming from the doctors.I'll await for the docs to give me the go ahead to work her in the evenings after the stomach settles. My Sister is in town with her boys so since she hasn't been here and seen Mom since the 3rd week in Aug they can spend time with Mom this week and work with her(hopefully).
Tues/wed ( Thanksgiving) - Tues was a good day Dr.Forti told me Mom was in good spirits and did well in therapy. She still is having debates on what to do the lower stomach issues. She talked to the neurology docs and they are starting her on some different meds next tues. The doctors have told me that if Mom gets off the Vent and progresses more in therapy but still has these medical issues she will have to go to a nursing home. This is not of Mom's wishes nor mine but I am not a nurse and Jerry could not take care of her at home in the situation she is in. Hopefully in 3- 6 months to a a year things will be different.So as the Docs said and the therapists said the more WE do even the little exercises will help down the road. Small things matter.Even if she went to therapy ...
Fri to sun- Rough weekend...Mom was very very tired and lethargic. She did do therapy Friday but it was rough. Her blood pressure, blood oxygen, blood carbon dioxide levels all good. There may be something up with her thyroid meds. She does not have a thyroid as it was removed in the early 70's then the rest in the late 80's. She needs to be on medicine. Docs are looking more into this.
Monday Nov 30- Therapy again today. Mom's focus and attention levels have been weak. She can't focus on things and looses her attention . Short term memory is weak also. Tomm the Docs are bumping up the thyroid meds. Hopefully these focus and attention things start improving. Hyperthyroidism is a possibility. Since she doesn't have one and all her levels are good this might help in a few days of seeing some improvement...
tues-fri- dec 1 to 4th...Much of the same. Stomach distended and at times her focus not there. BUT since the docs jacked up the meds for her thyroid there have been time of more alertness and communication. Not to bad of a week with therapy also. She stood (with help from the therapists) and did some other exercises. Also her vision is pretty good being that she was suffering from wet molecular degeneration. Might be a coincidence that she had fluid building pressing on the optical nerve but she says she isn't seeing the squiggly lines and faded black spots now so this is good ! Been 5 months since she had a shot in her eye.
Week of dec6th to 11th.... Well it seemed like the thyroid meds started kicking in a little bit. It will take a few more weeks to see the full effect but this week Mom has been more alert and a little more focused. Still drifts off but not lethargic like last week. The therapist have been working with her trying to get her to stand up. She forgets things quick. She will need to be able to stand to function and this right now is a setback. Many good things happened this week along with the thyroid meds upped. She has started to be weened again off the vent. As of Friday it's been 3 days. Also they have started giving Mom regular food although she eats very little they have begun to disconnect the feeding tube so that she begins to get an appetite. She is comprehending things and started at times to ask questions. So other then the physical part somehow we got to get more interaction and physical parts together. A very good week ! Hoping for more improvement next week. By no means is thins going to happen anytime soon and what I mean is it will take over a year for Mom to even do things we take for granted. everything is moving at an extreme slow pace. Honestly for what We were supposed to have left of Mom ,as told by the medical books, what she has accomplished is simply amazing to this point. All her vitals are right on . Blood pressure, white blood count, blood oxygen etc....Tuesday the 15th will be 18 weeks..what a journey!
This week dec 13-17th has been a good one. Mom is way more alert and more focused. She has been completely off the ventilator and is eating a little bit of soft food. They have taken her off the feeding tube during the day so she gets an appetite. Therapy also has been going well. She is standing ( with help of course) much faster then before but can only stand up to a minute. She has put cream on her face and combed her hair albeit slow but in time. She also is more talkative and her old sarcastic ways are coming back. Short term memory not so good. . She is being moved to the B-wing from the vent rehab. I am assuming the trach and feeding tube will be removed withing the next few weeks. To me since the docs have upped the thyroid meds her well being has improved. She also has talked to her brother Donald and Billy on the phone ( they live out of state) She knew who they were and also her brother Bob makes his tuesday visit every week and "torments" Mom ! LOL...much better week for sure.
Weekend 18-21- Was not able to get to the hospital at all because of getting 20 inches of snow on Sat. I called and Mom had a good day sat according to the nurse. ALSO they started "plugging" the trach and basically that means Mom has to completely breath through her mouth and nose. This is a critical step. Off the vent then plugging. It started last Friday for like 10 min. They then went an hour and work it up over the course of a few days. .
Monday Dec 21- Mom has been doing much better. Still weak and very hard to try to stand and move. Jerry and I have to do what we need to as the OP and PT help has stopped. We had a "family meeting " and because Mom has not physically progressed in 6 weeks with what they work on they have a time period to evaluate.Again this goes back to a few weeks ago of us physically working with her. I know she got stronger BUT it's the remembering and the focus on what she is doing that is not good. Short term memory is not there.The good news is that since her brain is functioning in ways never thought of( comprehending, speaking sentences, asking, feeding herself, talking with no problems, facial expressions, functioning albeit slow physically etc) there is a chance that with in the next 4-6 weeks she could go home believe it or not. This is a whole new ballgame as Jerry and I would have to be on alert for 24/7....This entails care all the time since she is not able to do things as of yet like we take for granted. We need her to come along further in the next 6 weeks as this will help us and more Jerry to make it easier on him. I need to find someone or an organization , family, friends, that can lend a hand. This will be another huge challenge when it comes to this. CONTACT on my homepage to email me if anyone out there who may have experienced this. The hospital will help with their connections and I will be reaching out also. This all is another new step in the recovery of Mom who is defying all odds for the amount of damage that initially occurred Aug 11.
TUESDAY DEC 22--19 weeks.....Today Mom got her tracheal tube removed from her throat. It's been in since the end of august. She has been off the vent since last week. The feeding tube is all that remains but until she starts eating more food this will remain. Wednesday they are moving her to the skilled rehab part of the building so another positive step in recovery. She needs to eat more and needs to get stronger. She still doesn't really grasp why she is in the hospital and why she can't get up and walk. For the most part she is in good spirits and kinda understands that she needs to do the above to get out. Still a good 4 weeks plus before any possibility to get out of the hospital and it's up to us to teach her relearning skills so she can function properly.
Week of dec 23-27-- Been a long week. The PT and PT work has subsided. Mom has not been able to show improvement to them for 6 weeks or remembering the sequence of how to stand up out of the wheelchair. She also has not been able to stand with out alot of help. One good thing is that she is now in the c wing which is the skilled rehab. Prob is her back is killing her severely and Jerry and I have a tough time getting her to sit in the chair much less get up out of bed. I asked for an MRI since she had a lower back surgery 4 years ago to see if something is out of place. We shall see....She is so aware of this and many other things mentally but physically is not able to do alot of "normal" things. I am going to have to reach out here down the road for any medical people that know of any local Baltimore people that can do home visits to help Jerry when the time comes. Email me ( contact us on the homepage) if there are any ideas....thanks. !
Dec-28-31-2009- Well what a trying end of 2009. Since Aug this had been one of the hardest things in my life. I would not anyone do have to go through this ever. To watch your Mother almost die then slowley come back after months of tubes, meds, doctors, being in a coma, feeding tubes, stomach and intestinal issues, infections, thyroid medication issues, and so much more and to still have her look at me and say "i Love you" is astonishing ! We have many many more months to go but it is a blessing to have my Mother still here with me. Jerry and her were married dec 30 1988 and he has been by her side everyday since aug 11.
Ok so this week they had to give Mom a 5mg dose periodically for her back pain. She can't sit long and complains. The docs had told me her white count is ok for the most part but there is a UTI. So her lower back is near the kidneys and hence the pain. Antibiotics are being administered and soon as the pain subsides it's time to get her up and about more.
Its been a long 5 months and I appreciate everyone's' concerns, emails, blessings and prayers. Have a great 2010 !