Tuesday, January 31, 2012

Bath Time

Today Bob took a bath in the bathroom for the first time. It's amazing how something we take for granted everyday can become a remarkable achievement. I hope we will be celebrating these quotidian tasks for months to come. Bob sat on a chair in the bathroom and used real shampoo. He enjoyed it.

By nine in the morning my time Bob had already had physical therapy, speech therapy and a bath. He ate some pureed food again. The phono-audiologist came twice today to make up the lost session from yesterday. Bob got a mirror to look at his mouth while he eats and vocalizes distinct sounds.

Bob was moved to room 215 today, also in the semi-ICU. This room has a better layout and a bigger bathroom. It also has wi-fi if you crane your neck out the window.

The nurse had to reposition Bob's feeding tube because it slipped out of place a bit. Bob didn't complain about this hurting. He then took an x-ray to be sure that the tube was inserted properly and had to wait to "eat" again until the results of the x-ray came back. I have no experience with a feeding tube, so I asked how the food is administered. It is similar to an IV bag that hangs and constantly drips into one's veins. They administer a certain amount of food per hour and adjust the machines according to Bob's needs. Of course this tube doesn't go into one's veins, it is inserted through the nose and goes past the stomach.

My mom spoke with Bob's doctor about how long they should expect to stay at the hospital. He said at least two more weeks. Today I made some calls to rehabilitation centers around Boston. The next step is visiting the centers.

Thanks to Janice for suggesting a center in Braintree and some idevice apps for speech therapy. She has also told us reassuring tales of a friend's recovery from a stroke similar to Bob's. Janice is Bob's sister. She lives in New York and even from that far she has been in touch with me and/or my mom daily via emails and calls.

Thanks for reading and keep the positive thoughts and prayers coming.

Monday, January 30, 2012

Side Step

Bob is doing well. Today at one of the physical therapy sessions he took three shuffle steps to the right! The physical therapist moved his right foot to the right and Bob followed the movement with his left foot. He did that three times.

Vocally, Bob has not changed much. He continues to make the same sounds, no words yet. The phono audiologist did not show up today, which was disappointing because without her Bob can't practice eating solid foods. She should come by twice tomorrow to make up the lost session.

My mom does vocal exercises with Bob,to practice and expand his vocabulary. She also does physical exercises with him at various times of the day. My mom is constantly by his side, patient and caring. She has never ceased to advocate for him, literally being his voice during this time when he can't speak for himself. I am amazed at how strong my mom is. I am very proud of her.

The search for a rehabilitation center here in the US has started and we welcome any suggestions and/or opinions. Please feel free to leave comments or email me. Thanks for reading and keep the positive thoughts and prayers coming.

Sunday, January 29, 2012

Patience

Bob continues to progress and impress with his determination to improve. His physical therapist mentioned again that Bob is a unique patient in the sense that he helps the physical therapist and is highly motivated. He has tried to move on his own, in an effort to make himself more comfortable.

Bob has been receiving visitors everyday at the hospital. I don't know who exactly has visited when, but friends and family come to visit him during the visiting hours. My mom says he always smiles very big for my uncle Zé. Tethi, one of my mom's oldest friends has also been a reliable source of support, in many different ways. Tia Rita will return to São Paulo tonight but will be back again next weekend. I told you she was my mom's guardian angel...

Bob has enjoyed the emails from his friends, thanks to all of you that have contacted me for my mom's email address. If you haven't gotten a chance to do so yet, there is still time. My parents most likely will not be returning to the US for two or three weeks at least.

Today Bob looked at recently sent pictures of the grandkids from the West coast and short videos of the grandkids from the East coast. He enjoyed them very much I am told.

So another day passes with not too much to report besides the fact that Bob is doing well. That should be enough, but it is hard not to want more. I wish that I was there to see it all first hand, to look into his eyes and find him there. But alas, I have little choice in the matter. Although I have a renewed passport in hand thanks to my cousin, Duda, I am almost in my third trimester. I must stay put and do my part from over here. Thanks for reading and keep the positive thoughts and prayers coming.

Saturday, January 28, 2012

Bob ate some food for the second time

This will be a short one because it's pretty late but I didn't want to leave you hanging.

Bob ate the puréed food again. He won't have any tomorrow because the phono-audiologist does not work on Sundays. She is the only one that can give him this kind of food. Bob eats with gusto. My mom said he would probably eat more if he was offered.

Bob had an MRI today and the results were normal. There is still no hemorrhaging. Bob was put into a standing position twice. He gets very tired after physical therapy but he snoozed just a little during the day today. He woke up relatively late, at 7:30, this morning.

Bob continued to study from the flash-cards. He looked at pictures of fruits and numbers from one to five. He did so so on the tests for handing over a certain fruit. Bob can stick out his tongue, but not yet move it from left to right.

Tia Rita is spending the night with him at the hospital again and we are very grateful to have her help. She leaves for São Paulo tomorrow. I'll write more again then. Thanks for reading and keep the positive thoughts and prayers coming m

Friday, January 27, 2012

Mais Ligado

Let's get the good news out first: Bob was able to swallow food for the first time today! It was the consistency of baby food, and he didn't gag. Only the speech therapist can give him the food because as she feeds him, she monitors his swallowing with a stethoscope; she also monitors his oxygen levels to see if the food is going down the correct pipeline.


Bob tried to move his oxygen meter from a finger in his left hand to a finger in his right hand. This is significant because previously he acted as though his right side was unidentifiable or nonexistent. 


I spoke with Juliana and she said that what is keeping Bob at the hospital is his feeding tube. She said it is good that Bob is still in a hospital setting because when he gets discharged he won't have access to physical therapy two or three times a day or speech therapy once a day. So there is no rush to get Bob out of the hospital because he is benefiting from being in that environment, but being able to swallow food is a step towards independence.


Tia Rita, my mom's sister and guardian angel for the moment, is back from São Paulo, where she lives. She spent all of last weekend by my parents' side and came back again to help. I spoke with her on the phone and she said she saw big improvements from the time she left. Hers is a unique perspective. One that has spent some time away and come back can notice the incremental changes more easily than someone who is there watching the grass grow so to speak. Tia Rita said Bob is participating more, moving more and is "mais ligado". This phrase is hard to translate but roughly means more with it. Tia Rita joked that Bob smiled plenty for Juliana but not so much for her when she arrived. When I called in the afternoon Bob was surrounded by women: my mom, Tia Rita, Juliana and the physical therapist. He was happy. Tia Rita brought some flash-cards in English for Bob to study from. She has been an amazing help and is very supportive of my mom and Bob. Tonight and tomorrow night she will sleep at the hospital to give my mom a chance to sleep a bit better at my grandmother's house.

Juliana also thought Bob was understanding things more. She witnessed my mom asking Bob to take off his glasses using just words, no gestures or pantomimes and he did. Bob stood up again today, being helped on either side by my mom and the therapist. I was lucky to be sent a picture of that occurrence and as difficult as it is to see him in a hospital gown again, it was great just to see him. He was looking right at the camera and had a face that said "are you seriously taking a picture of me right now?" Those of us that know Bob can probably picture what that looks like.

Bob gets frustrated when my mom doesn't understand what he is trying to say. She said he doesn't know that the sounds he makes don't come out like words. He gets visibly upset when he is not understood. I am told Bob is very motivated to do the physical therapy exercises but not so much the vocal exercises. 

My mom read Bob some more emails from friends and family today. She asked that when you send them, to keep them brief, just a few sentences as to not tire out Bob. He really seems to enjoy them so feel free to send emails. If you would like the address, email me and I will pass it along to you. Thanks for reading and keep the positive thoughts and prayers coming.



Thursday, January 26, 2012

Asbestos

Bob did very well in physical therapy today. He continues to impress the therapists with his strength and willingness to work hard. Bob was put in a standing position again today and although there was talk of giving him baths in a shower, the therapists chose to delay that a bit further until he is more steady on his feet. His right side continues to be paralyzed with little or no improvement.

Bob is writing well.  His left-handedness is a huge advantage. Bob copied the picture of a car that my mom's friend Tethi drew for him. When asked to identify a cat or dog from pictures, he could not do it. Same with pictures of an airplane and a car. So as for cognitive understanding, my mom said there are periods when it is evident he understands everything very clearly and periods where he understands nothing. My mom said they hold hands when Bob is sitting down for physical therapy. She jokes that it's just like being home watching tv. He gets the joke. My mom sometimes reads emails they receive to Bob and he recognizes some of the names.

Today marks one week of the stroke. A lot of progress has been made, and we must look at the big picture. It is a long road to recovery. There is a time to be optimistic and a time to be realistic. Right now, we just don't know how much he will recover. I'm not there to see first hand all the strides he has made or all the dark areas that aren't filled in yet. I'm going to be optimist and think that the best is yet to come. Bob used to joke that the glass wasn't half-empty or half-full, it was half asbestos. Take a moment. Let it sink in... That's a hallmark Bob joke. He is a closeted optimist, though. I know he was an optimist on the inside, even if he always thought the worse was going to happen. Why else would he have worked so hard after his heart attack at changing his lifestyle? One has to be optimistic about life to overcome the widow-maker. He will conquer this challenge, too.

Thanks for reading, please leave comments if you have any questions or just want to offer up a woo-hoo for Bob. And keep the positive thoughts and prayers coming.


Wednesday, January 25, 2012

Three little birds...

Before I go into today's report, I'd like to share with you a few new features of the blog. I had a chance to spend a bit of time investigating how to make this more accessible and now you can subscribe via email. That means that you will be notified via email that a new post has been added. I have also changed the comments settings. Anyone can leave comments now, you don't need a special login. When I first set up this blog, I thought all these things were the default. So if you are a "follower", you must also subscribe using the link on the top right. I thought being a follower meant you'd get email notifications automatically but I needed to install the widget I just installed to be able to send the emails with the post updates. I hope it all works, let me know if it doesn't. Now onto Bob...

Bob had two great physical therapy sessions today. During the first one in the morning, he was put in a standing position for the first time. It must feel great to see the world from that perspective again after nearly a week lying or sitting. Bob was lying down on the bed for the second session, working on different muscle groups. He tries to readjust himself to be more comfortable, and he can't do it by himself, but he tries hard and that matters. The physical therapist said he rarely sees a patient at this stage with this much strength, he was impressed by Bob's tenacity.

I found out today that he contracted his abdominal muscles yesterday and that his cough is more productive. He still needs to work on opening his mouth when he coughs. But his lungs aren't worse, they are still the same.

Bob can sound out "Ahhh" and my mom is working on "Lalá" so that he can call her when he needs something. Lalá is what her grandkids and grandnieces call her. Together they must practice sounds and try to get them back into Bob's repertoire.

Today a friend posted Bob Marley's song "Three Little Birds" on my facebook page. It was a very nice gesture and I heard it all the way through without crying even once. Yeah, right. It is hard not to cry these days but I am getting through this sustained by the phone calls, emails and little notes on facebook. Thanks to everyone that is reaching out to me and to my family in all these different ways. Thank you for visiting the blog and keep the positive thoughts and prayers coming.

Tuesday, January 24, 2012

Communicating Needs

Bob sat for four to five hours today, he enjoyed this time sitting and did well. He continues to have good physical therapy sessions. Today the phono-audiologist stated she saw progress in his ability to swallow and is hopeful that this skill could come back. She encouraged him to write and he wrote "Robert" almost perfectly. When asked to write "Shella", he wrote "Robert" again. This illustrates how sometimes he understands and sometimes he doesn't understand what is being asked of him.

Bob communicated needs today, asking for the channel to be changed and the light to be turned off. My mom celebrated this as a small victory with him, as enthusiastic as can be. She said he reacted in typical Bob fashion: with a "so what?" face. I can clearly picture that face and it makes me smile to think it is still there.

The therapist encouraged Bob to play with his ipod touch and to try to comb his hair. Things that are familiar to him are stimulating and they all help to bring back the skills he used to have. I asked if he can read, he devours books, but she said it would be too much stimulation and he would get overwhelmed.

Baby steps. It hasn't been a week and we have to look at the big picture and then we see that under the circumstances, he is doing very well. There have been significant improvements and we have to focus on the positive.

My mom showed him pictures of the grandkids that were stored on her ipad and said Bob smiled at them. I'll leave you with that nice thought for today. Thanks for checking in and keep the positive thoughts and prayers coming.

Monday, January 23, 2012

Eye of the Tiger

I called very early, my time, and my mom was already at the hospital. Bob had had a shave and a bath. She said: "Bob, it's Malu" and put the phone to his ear. I could talk to him for the first time since the stroke happened. I just said a few words, what you would imagine I'd say. I heard his sounds for the first time and it was difficult not hearing his voice on the other end. The reality hit. I imagine it's going to keep finding ways to hit. Being so removed from the situation it will take longer for the facts to sink in for me. But my mom said he smiled. And that makes it better.

Bob's IV lines were removed from his left arm and now he is not "hooked up" to anything, just the oxygen monitor. That's good news.

I called again around noon and learned he had a good physical therapy session today and had just sat down. He has less mucus accumulated, perhaps due to his ability to stay seated for long periods of time. He had a very low temperature, which was gone by the time I called again at night.

I received news from Jason in the early afternoon that Bob had been moved to a room, number 211. It is a semi-ICU. Bob is still constantly monitored. That's more good news.

When I called again in the evening, Bob was lying on his side, and he didn't like that very much. My mom also said he had fought to have the tv's remote control, something she said was "very Bob". It will be good for him to hear English, although he might get bored since there is only one channel in English.

This morning on the way to my parents' house to find some paperwork for my mom, the song "Eye of the Tiger" came on the radio. I couldn't help but think of Bob. After the heart attack Bob was amazing about modifying his lifestyle, eating right, exercising and physical therapy. Everyone that knows him knows he takes his responsibilities very seriously. I think he will take his rehabilitation just as seriously and will surprise us all with "will to survive".

I hope to write again tomorrow. I might not always have good news, I'm hoping that when I don't, I have just no news. Thanks for reading and keep the positive thoughts and prayers coming.

Sunday, January 22, 2012

Sunday afternoon update


Brasil is three hours ahead now due to daylight savings time, so afternoon here could already be evening there. Just for clarity's sake, I'm going to use my local time here in the US unless I state otherwise.

I spoke with my mom about an hour ago and she said Bob is sitting on a chair, sleeping there. This position should help with the extra mucus. It's nice to hear he doesn't have to lay down anymore.

He did well in his first physical therapy session and has another one coming up. The speech therapist should also visit later today.

Bob is in a new room, still in the ICU, which has more space for company and a sink. He could have been moved to another room (the step down from ICU) but there were no rooms available. There is a chance he'll be moved to that other type of room tomorrow.

I will post again tomorrow unless there are significant changes in Bob's status until then. Keep the positive thoughts coming...







Bob Suffered a Stroke

Bob, my american Dad, suffered a stroke on thursday, January 19, 2012, late in the afternoon.

He was in my grandmother's apartment in Flamengo and was found by my mom shortly after he arrived home from my cousin Pedro's house.
The ambulance was immediately called and so was my cousin, Juliana who is a doctor.
They took him to a hospital in Botafogo called Pro-Cardiaco, where has been in intensive care.
The risk of hemorrhaging now keeps decreasing, if it is going to happen it will within 7 days of the stroke. After 48 hrs have passed, if hemorrhaging happens, it won't be because of the drugs that were administered, it will be his own body's way of reabsorbing or flushing out the clot.
Yesterday he had a brain scan and they found the clot but no hemorrhaging.

Bob is paralyzed on the right side. He can't talk, he can't swallow - although he has done it once, he doesn't have a gag reflex - although he has shown one once.
He can move his left arm and it is a good thing he is a lefty because he has been writing to communicate. Sometimes it is legible, sometimes it is gibberish, but he has put a sentence together: "HOW YOU LEFT HOME?" The "How" was just like his handwriting used to be, my mom said. He gets confused about where his right side has gone. It's not only that he is paralyzed on that side, it's as if that side has disappeared to him. Sometimes he will reach his left side over to feel it or my mom will raise his right arm to show him that it is in fact still there.

Bob has physical and speech therapy a few times a day. Usually my mom or Tia Rita are there to help with the translation. Yesterday Bob moved his right leg ever so slightly.

There is a chance of him getting pneumonia, but the doctor is not too concerned about it and said it can be treated easily with antibiotics.

Yesterday evening they inserted a feeding tube through his nose. He also has IV fluids going through his left hand. He does not need a breathing tube. He can breathe on his own.

Bob can recognize the people in the room and can wave his left arm to indicate a need. He also blinks to communicate.

Today he had a lot of mucus that required suction. He is more lethargic than he has been in the past and less responsive.  Bob has been in a completely horizontal position up to now as to allow the blood to go to the brain, but he might go into a chair later today.

Thank you to all that called and emailed, and especially those who could be physically present and hold my mom's hand when I can't.  A special thanks to Juliana without whom we would have much less access to Bob in his ICU room and no insider connections to provide Bob with the best care possible.

I'll write more as soon as I have news.