I compiled a few of the updates I gave people as the stroke progressed. I think they are very insightful and give a glimpse into what our life was like when his stroke happened.
Nov 22, 2013:
Hola mi hija, estamos al pendiente de tus informes, todo va a salir bien. Los queremos mucho
Tu Mami Lupita
Nov 23, 2013:
I think enough people are worried that I’ll go ahead a post a public update. Ricardo is in the ER. He has an Arterior venus malformation which is causing build up of fluid in his brain. We just found out today. Most likely he will need surgery, possibly tomorrow, and of course brain surgery is always a bit risky. We appreciate any prayers and good thoughts our way. We’re in Johns Hopkins, which is a great hospital and we are feeling nervous but pretty positive.
Nov 23, 2013:
It seems the cranial pressure is not so severe at this point, so they are going to observe Ricardo until Monday and then run the additional tests before deciding on a course of action. This should be a good thing since they will have the extra time to make sure the treatment is the best possible option for Ricardo (probably still surgery, but we don’t know yet).
Nov 25, 2013:
He just had an Angiogram done. We will find out the results today. All they said while he was in it was that they didn’t see anything they didn’t expect…whatever that means. We were told this morning that the Arteriovenous malformation is in his thalamous, which would make operating difficult since it is deep in the brain. Other than that, we don’t know. They may do surgery or they may try some other treatment. We are still waiting to find out. He’s doing well though. His pains are pretty minor thankfully, some headaches and dizziness.
Nov 25, 2013:
We are still waiting for the results from the angiogram Ricardo had this morning. The nurses told us they are currently discussing it and making sure they all agree with the plan. They will tell us what that is tomorrow morning I guess. It looks like probably no procedure tomorrow, just news hopefully…
Nov 27, 2013:
So, good news and bad news about Ricardo. The good news is that his condition is fairly stable, and he is home as of a couple hours ago, and doing well (off and on moderate headaches and some blurred vision, but mostly feeling pretty normal). The other good news is that we have time to talk to doctors and make sure we do the very best possible things.
The bad news is that it looks like we are in for a longer road than initially expected. He is going to need at least one surgery to remove the pressure on his brain. He also will either need a second procedure that carries more risk or he will have to permanently accept a higher risk for a severe stroke.
So, mixed news, but he is doing well and we are enjoying our Thanksgiving now with his family
Nov 28, 2013
I am thankful today to be with family, especially my husband, having thanksgiving dinner together at home
Dec 6, 2013
It’s been a stressful day. I have learned a few things throughout these last few crazy weeks. First, I hate red tape at certain hospitals. Also, I hate red tape and stupid rules with certain insurance companies. But, I love having such supportive and kind people around us. Thank you Ale, Ma., all of my family members and friends, those who have watched Andrew and walked our dogs, and called and texted and cared, but especially thank you Dusty who has been a tremendous support, guide, and source of information. I’m also grateful for modern medicine that gives us great hope despite a delicate situation. It’s been crazy but we’re all doing pretty well all things considered
Dec 7, 2013
I wanted to give you the update on Ricardo.
Ricardo was scheduled for a surgery on Monday, but then my cousin got a team together in Denver and they reviewed his case and the neurosurgeons in Denver said they thought the procedure he was going to have done was a bad idea. So, at this point we are going to go get a third opinion on the 23rd. We’re going to go back to the Doctor at Johns Hopkins. We were pretty frustrated with that hospital because they have been very bad at communicating with us. But his specialty is in AVM’s, which is what Ricardo has, so we decided we will wait and go see the doctor. From what my cousin told us (who is a neurosurgeon in Denver), he feels like Ricardo would be better off having a gamma knife procedure. It takes two years, and he would be at a high risk for a stroke those two years, and he would possibly loose vision in his left eye, but he said he would take that risk over the risk of doing the embolization. He said an embolization on the part of the brain where Ricardo’s AVM is would carry a 10-15% risk of him loosing motor function-possibly his ability to communicate or move. So that’s why he felt it would be better to do the gamma knife and risk loosing his left eye’s vision. The other team of doctors though felt the embolization would be the better move and thought it wasn’t quite that risky. I guess we’ll see what Dr. Coon says on the 23rd.
Ricardo has had some increased symptoms though so we will have to see what happens. My cousin said that if Ricardo’s symptoms are a result of the hydrocephalus, then there are a number of possible treatments for the hydrocephalus itself that would be reasonable and not too risky. However, if the increased symptoms are a result of the AVM growing in size, then he would have to have the embolization, since that’s the only procedure that can be done in a short time. I left a message at Dr. Coon’s office at Johns Hopkins about his increased symptoms. Early next week we may be back there getting another MRI done to find out what is causing Ricardo’s increased symptoms.
It’s been a bit stressful. I am so grateful to have Dusty, my cousin though, and the advice of his team from DU, and also all the other great neurosurgeons and interventional radiologists around here. The team at Washington Medical Center has been great and very attentive. The team at Johns Hopkins has been very bad about communicating, I think because the hospital has a lot of “red tape” as far as strict protocols and rules about when patients get to see and talk to their doctors; however, they have one of the best specialists in AVMs, so we have decided at this point that we need to just be patient with all the silly rules so that we can go see Dr. Coon. We just want to make sure we are making the right choice before we proceed with either procedure.
Thanks for all your support and love.
Dec 15, 2013
Ricardo is scheduled for his first procedure Tuesday. I am asking for prayers and good thoughts his way. It is a bit of a scary situation. On the other hand, we do really like the team that is going to do the procedure and it is pretty much a miracle Ricardo had a symptom and they caught it before he had a stroke. There is much reason to hope. Still though, prayers are appreciated.
Ricardo is scheduled for his first embolization on Tuesday afternoon. Basically, they are using super glue to block off certain effected veins in his brain and shrink the size of the AVM.
We have been told that he has a particularly difficult case, with a very large AVM in one of the worst possible parts of the brain–the thalamus and basal ganglia. I don’t mean to be a doomsday-er, but I figure some people might want an understanding of what’s going on. The goal is to do 4-7 embolizations in the next month+ to reduce the size of the AVM, and then do monthly gamma knife treatments (pinpointed radiation) to resolve the problem.
The bad news is that this is a somewhat risky procedure for Ricardo–we’ve been quoted everything from about 3-30% of a severe complication from the procedures (it’s hard to put a number on it because these AVMs in this location are very rare). The good news is that, even considering that risk, he will most likely be fine, with minor permanent complications also a possibility.
He will continue to be at a very high risk for a severe stroke for about 2 years until the treatments are completely done. I wish that wasn’t true, but it unfortunately is.
It is pretty much a miracle though that Ricardo found out he had this. Less than a 4th of people with Ricardo’s specific AVM in that location have any idea they have an AVM until it has already hemorrhaged. In this respect, he is extremely fortunate.
Anyway, we have both good reason to be pretty anxious and also pretty hopeful. We do both appreciate any prayers and good thoughts. We are anxious to get through this next month and a half.
Silvia Stubbs: I did talk to Rita about 3:00 our time and she told me that it was too soon to know how the surgery. Ricardo was still in surgery. She said that when she knows something she will posted here. Keep those prayers going I am sure this is very critical time. Love all of you guys!!! I know that Heavenly Father is in control. Chelsea Lyman: Initially the embolization went well, but after the surgery was done he had some bleeding and is now in critical condition and back in surgery. Pray everyone!
Dec 17, 2013
Alicia wanted me to update everyone. Ricardo is in an induced coma right now. He bled after embolization. From what I know they put something in to relieve the pressure, but it is a very critical situation. Alicia is probably not up for phone calls tonight, but keep her and obviously Ricardo in your prayers. Pray that she will have strength right now.
Dec 18, 2013
Ricardo is about the same. He is responding a little bit to pressure and possibly to voices. So those are good signs. He seems to be improving a little bit to me, but the next few days will be really critical. Please keep praying for him.
Dec 18, 2014
I’ll give the family a little more detailed info than I am posting on my wall. Ricardo suffered a very bad hemorrhage/stroke after his procedure yesterday. It was in the basal ganglia and possibly affected other parts of the brain as well. The implications of this are unfortunately very severe. Right now I am just hoping he will live, that his brain will stop bleeding, and then that it will heal as much as possible. He will almost certainly have disabilities from this, but I am just hoping for the very best possible outcome at this point. I really appreciate all your love and support. He is still in an induced comma, but they lower the dose periodically to see if he is able to respond. He does respond to pressure with some limited movement, and his eyes dilate. So he is very much alive. That much I can say.
Dec 19, 2013
I feel so much hope today! Ricardo’s cranial pressure has been mostly stable. He also has started trying to follow the nurses instructions when they wake him up briefly. He is fighting to live, and all your thoughts and prayers are helping. The next couple days will be very critical. Please keep praying!
Dec 19, 2013
Chelsea Lyman: Alicia gave me permission to share her last txts. This is what she told me a few minutes ago. “I was a wreck yesterday but since last night I have had so much hope. Last night he was coughing and they were suctioning saliva out of his lungs and he woke up a little bit. I swear he looked at me, he was trying to hold my hand, then when I gave him my hand he squeezed it. He was biting on the breathing tube and I told him not to bite down, and I swear he shook his head no, then I told him he needed to relax his mouth and he relaxed. I swear he is hearing me and knew me. I can’t tell you how much hope that gave me. Then today he was obeying the nurses instructions trying to open his eyes and squeeze their hand and move his legs. That is so huge. so huge. I know he’s still in a scary place, but I have so much hope at the moment. I’m praying for a miracle chels. I know ricardo wants to live so he’s going to give it all he’s got. And I think ricardo is being blessed. Keep praying!”
Dec 21, 2014
Jenny Johnson: I’m anxious for an update too. I think I heard that they might be bringing him out of the induced coma sometime today, and then they’ll know a lot more. Mom’s plane just left Denver.
Dec 21, 2013
I have an update from Alicia. “He was awake for a bit this morning but he is obviously very uncomfortable and in a lot of pain so he became pretty agitated. his ICP’s (intracranial pressure) goes up and his blood pressure goes up when he’s stressed so they have decided it would be better for him to remain sedated for a few more days. So they will just wake him up to do the tests. If his ICPs stay stable through the weekend they are going to do a tracheotomy on Monday. They said ricardo is able to breath on his own thankfully and his gag reflex is working, but his breathing and reflexes are not consistently good enough at this moment to leave him without support. Doc said the trach. carries a much lower risk of infection and pneumonia at this point than either leaving him on the respirator or leaving him with no breathing assistance. He said he shouldn’t lose his voice or anything and it is an easy procedure. It would just be temporary as well. So that’s the plan. I feel good about it. Ricardo has had a fever so they are going to work hard to control his ICPs and blood pressure. That and prevent secondary infection. We’re going to work extra hard to keep him calm. DOc said the next two weeks will continue to be pretty critical for him because this is the time there is a high reoccurrence of hemorrhage and also of infection (with so many holes and tubes in him). Ricardo is doing so well though. His brain seems to be running slow and his motor skills are slower and weak, but I am pretty certain his comprehension level of what is going on around him is almost completely if not completely in tact. Today I told him I was going to turn on television and he turned his head toward it and opened his eyes the widest I have seen him open them and watched tv until he couldn’t keep his eyes open. His mom talked about Andrew and he got visibly emotional (so we decided that ofr now are not going to talk to him about anything that relates to real life in any way–just news, sports, movies, and stuff that relaxes him). It’s a miracle though. His awareness seems to all be there. That was essentially impossible given the type and severity of hemorrhage that he had. So I can’t help but be hopeful and grateful. Right now they just have to continue stabilizing him. Once his brain pressure is no longer an issue then they will focus on rhabilitation (though I will help move his hands and legs and stuff so the muscles don’t atrophy).”
Dec 24, 2013
Chelsea Lyman: From what I know, they might do a tracheotomy today. They didn’t do it yesterday because he has had a high temperature so they are just trying to continue to stabilize him. He is still sedated as far as I know, but they bring him out of it occasionally to do some tests. They want to get the trach in so the respirator doesn’t bother him anymore.
Dec 24, 2013
These have been some long, hard days, but overall Ricardo is doing so much better than expected. We have had a few scares, but all of them have resolved quickly. it’s hard to pass Christmas this way, watching my poor husband suffer so much, but I can’t help but feel that it is a miracle he has survived the hemorrhage he suffered, and that he is as mentally alert as he seems to be. I cannot say this Christmas will be anything but miserable for me, and especially for Ricardo, but I am grateful that I got my Christmas miracle that my husband is alive and knows I am by his side.
Dec 24, 2013
These have been some long, hard days, but overall Ricardo is doing so much better than expected. We have had a few scares, but all of them have resolved quickly. The last 3 days they have had him on something called the arctic sun to control his fever. They say fevers are very common with brain injury but fevers potentially can damage the brain more. He shivers a lot with the cold pads that are on him though so they are keeping him even more sedated to prevent shivering. When they wake him up briefly he can still respond and move his fingers and toes when asked. This continues to give me a lot of hope and is a very good sign. It sounds like they will keep him sedated for the rest of this week except for occasionally waking him up to do neurological exams. Once his temperature is controlled and his Inter Cranial Pressure is more controlled then they want to do a tracheotomy temporarily so they can get him off the respirator. I can’t wait until they can do that because he is currently very miserable any time he is even sort of awake. It’s hard to watch. It will be nice to finally see him even a little more comfortable, no longer gagging on the breathing tube or shivering.
It’s been very difficult, and it’s hard to pass Christmas this way, watching my poor husband suffer so much, but I can’t help but feel that it is a miracle he has survived the hemorrhage he suffered, and that he is as mentally alert as he seems to be. I cannot say this Christmas will be anything but miserable for me, and especially for Ricardo, but I am grateful that I got my Christmas miracle that my husband is alive and knows I am by his side. And I am grateful to have Ricardo’s family here suffering with me, to have a very kind ward that has bent over backwards to provide support to us, and to have my sweet mother here.
Dec 25, 2013
[started the charity “Ricardo’s Recovery”. Didn’t even realice I was doing it on Christmas day, since every day was the same]
Dec 28, 2013
Ricardo is doing the same. It may be a couple more weeks before we will really have an idea of the damage that was done. The good news is that he has been pretty stable. They are still working on stabilizing his temperature. His inter cranial pressure has been better though the last few days. It is very slow progress but he is going in a good direction. Keep your prayers for him coming.
Dec 31, 2013
Asking for prayers again today…It looks like Ricardo may have an infection of some sort. Last night he was feverish and his blood pressure dropped way down.
Via Alan Stubbs:
For those who have not seen Alicia‘s post, here it is again:
“Asking for prayers again today…It looks like Ricardo may have an infection of some sort. Last night he was hypothermic and his blood pressure dropped way down.”
About 9:00 am, Dec 31, 2013
Then an update at about 9:15 am:
“I just talked to Ricardo’s nurse and they were able to stabalize his blood pressure and temperature. They are hoping he doesn’t have an infection but he might.”
Dec 31, 2013
Ricardo is stabilized again and hopefully they can keep him that way. We’ll pray it’s not an infection. They will have to wait a couple more days before they do the tracheostomy.
Jan 1, 2014
Ricardo does have an infection but the antibiotics seem to be working, so that’s good. I am home sick today but Ricardo‘s sister said he was more alert and responsive than he ever has been. I really think once they can get the trach and PEG done, and he has the tubes gone from his throat that we will see some huge advances in him. I’m praying they will be able to do that soon.
Jan 4, 2014
They finally got the tracheostomy and PEG done and it seems to have gone well! Yeah! I think this is going to be a huge step in the right direction since hopefully Ricardo will be more comfortable and then they can have him awake more. One more step in the right direction.
Jan 5, 2014
Missing this [picture of ricardo laughing with Andrew]… I can do this! Gotta be strong for both of these boys!
Jan 5, 2014
Ricardo is more awake and more relaxed now that the tracheostomy and PEG are done. He is a lot better without all the tubes in his throat. He has been moving his left side quite a bit. He still hasn’t been very responsive when asked to do things, but occasionally he has responded. He has a CT scan or MRI tomorrow morning and maybe that will tell a little more. I’m grateful they finally got the tracheostomy done.
Jan 6, 2014
I just chatted online with Alicia, and since I took her time I’ll share with you some of what she said (she asked me to update you):
Me: how is Ricardo today?
Alicia: he seemed really frustrated. I actually think he is pretty with it. Which is great! I was worried about that for a few days, but then last night and today he was trying to communicate a couple feelings to me with some gestures with his left hand. He kind of shrugged once, and he was pulling at the catheter that I think was painful for him, and then today he picked a movie he wanted to watch
How was the scan?
Alicia: they did a CT scan and all I know is that they said it looked like his brain was reabsorbing some of the blood and this scan looked better than the first two scans they did right after the hemorrage.
sounds like bits of progress to me
Jan 7, 2014
Today was such a good day for Ricardo! Huge improvements! He was using facial expressions to communicate multiple emotions and feelings very effectively. He was very obviously disappointed with the movies I had brought for him. He shook his head back and forth when I showed them to him and when I asked if he wanted to watch one he shook his head no He was answering my questions with yes, no, maybe, and I don’t care expressions and motions. He seemed so so himself, and he was very obviously understanding everything I was saying and trying to communicate! It’s a miracle! I am so grateful and happy, I could cry!
Jan 13, 2014
Journal of Ricardo
Jan 13, 2014: I was showing Ricardo pictures. He was being inconsistent. Once he said he knew my mom and once he said he didn’t. He said he didn’t remember the people who he was video chatting with a few hours before (it was his parents).
Hey, so yeah, yesterday I was showing him pictures and asking him if he knew the people and with my mom once he said he knew her and once he said he didn’t. Then with your mom he said he knew her in one of the pictures, but then I asked him if he knew the people he had been talking to on the computer (he skyped with your mom and dad yesterday), and he told me he didn’t know them
he was just being really inconsistent the whole time and it made me worried
but then today I was showing him the pictures of the museum in DC when we all went together, and he said he remembered it. And we were watching colbert and he said he remembered it.
and he was acting like he knew me today
Like I asked if I should go home, and he looked sad and shook his head no
- you can say he can see
yeah, he can see
I don’t know if he can see as well though or not
I’ve asked him a couple times and he hasn’t answered me
it seems like he may have trouble with his peripheral vision from my observations
but i’m not sure
yo can make the tests periodically
so you compare the changes for good or bad
if he would cooperate
he generally ignores my questions like that
but it seems like he doesn’t see me until I am right in front of him
Jan 14, 2014
Ricardo gets a little better each day. Today the nurse said he mouthed his name. That’s a good sign! They are starting to talk about transferring him to a room outside of the ICU in the near future. His progress is really exciting! It is still unsure how well he is going to be able to talk. He has now attempted speaking with a valve once, and it was very difficult for him. He did manage to make one very small sound. It’s going to be a lot of work, and it is still to be determined if he will be able to speak effectively with rehab (there’s a chance he has aphasia of some sort). He also was being very inconsistent answering questions yesterday. I’m not sure at the moment how much he remembers before the stroke. I have thought he was mentally fine, but yesterday I started wondering if he has lost all his memory before the stroke. I guess only time will tell. I still am hopeful that is not the case. Anyway, his progress is going great! It’s just hard to realize that I don’t know the ultimate outcome from this, if he will have memory and personality changes. I don’t know if he will be able to communicate the same way he used to. There are still a lot of unknowns and that is hard for me right now. He is getting better though! A miracle this week is that they think his brain is now circulating it’s own fluids. They were trying to wean him from the drain and he was doing really well. During this process the drain stopped working. They decided to remove the drain, and he has done fine without it. It has been nerve wracking, but this is the 4th day now without the drain and his mental status has not changed and the two CT scans they did looked good. It looks like he probably won’t need a shunt! That is great news!
Jan 15, 2014
Ricardo should be out of the ICU and into Intermediate care any time now! Happy day!
Jan 15, 2014
Jan 15, 2014: Ricardo was smiling and laughing when I was talking about Andrew. I was telling him about the silly things Andrew does and Ricardo was smiling. He acted much more normal today than yesterday when I talked about Andrew. His personality seemed very much himself. He seemed to recognize me.
Every day he he does a little better and moves a little better. I am positive he knows who I am today. He was acting just like himself. I started telling the nurse all the stuff he was doing with me and he got quiet. I asked him if he was mad that I was telling the nurse about it, and he shook his head yes. He’s still mad at me…
He was mad because he just wanted it to be between me and him
I asked him if he felt like I was trying to be just like the nurses and he nodded his head yes
he hasn’t talked to me since
Makes me happy today though
I will try to be better about keeping our private interaction between us, and not sharing the details with the nurses. But now I am sure he really does remember me
He knows exactly who I am and he remembers Andrew fine. He seems totally mentally with it today.
I wonder if he just has a few days where he is confused.
It is totally different than a few days ago
The doctors said that is normal with a brain injury for him to have good days and bad days
He is seriously doing so well today! It just makes me happy! And he has been moving his right leg a little. He has been working really hard to move his right side
Jan 16, 2014
They are starting to think about getting him into Rehab next week And it turns out the acute rehab is only 10-21 days long (depending)! Then he will be home! So exciting! (also so much to do now, lol). I guess initially the doctor thought he would be going to a subacute facility in a nursing home for several months when he told me about 6 months in a rehab facility. With how well RIcardo is doing he may be able to come straight home after acute rehab and then do outpatient rehab after that but live at home! Yeah! So much good news to share! He is doing so so well! I couldn’t be more grateful!
Also, he is having an angiogram, hopefully tomorrow, which will give us some answers as to what happened, if it could happen again, and if the AVM that started this whole mess is completely blocked off or still a risk factor.
Jan 16, 2014
Jan 16, 2014:
Me dijo que es muy común que quitan el traqueotomía durante la rehabilitación (van poniendo tubos más cortos hasta que lo quitan). No pueden quitarlo hasta que Ricardo no tiene un tos (tiene mucho menos que antes, pero todavía tiene un poco). La enfermera me corrigí (porque pensé que el doctor me dijo que ricardo no puede salir de terapia intensiva con el traqueotomia), Ricardo no puede salir del ICU si todavia está conectado a la respiradora, y ya tiene más que una semana sin usar la maquina para respirar. pero no hay nungún problema si tiene el traqueotomia en la rehabilitación. Que bueno.
I asked him if he would be excited to get back to his cuddle bed and he said yes (I think I remember him doing this (I am writing this after the fact. I started this journal based on what I remember and wrote down, but I am starting it on Jan 19th)).
I think it was on the 16th that I asked him if he remembered the movie Django unchained that he watched with his sis and he nodded his head no, then he nodded his head yes and looked at me like “duh”.
Jan 17, 2014
He is having another great day. Moving well, understanding well, interacting well. He seems to know me and didn’t want me to go home. I told him I was only coming for a short time tomorrow and he seemed very sad, so I told him I would change my plans and be here longer tomorrow. He seemed happy about that. I told him I need him. He was acting normal with me lots of moments.
Jan 18, 2014
He chatted with his parents. He understood their Spanish and moved his hand when they asked him to (in Spanish). He didn’t want to interact much with them.
He was watching a basketball game. He was mad when I interrupted the end of the game to talk to his parents.
Jan 19, 2014
I came in. Ricardo was watching a bowling match. I asked him what the highest bowling score he had ever bowled. He shrugged his shoulders. I asked him if it was higher than 100, he said yes. Higher than 150, he said yes. Higher than 200, he didn’t answer. I said his mom would love that he was watching a bowling competition. He shrugged his shoulders.
We watched Denver play football and win to go to the super bowl. He followed the game. He didn’t seem excited or not excited when Denver won.
I showed him pictures. He smiled at the videos of Andrew. I started asking him questions. He said he didn’t remember when we went to DC just before his surgery. He said he didn’t remember getting diagnosed with an AVM. He said he remembered our trip to Mexico. I asked him if he did again, and he said he did not remember it. I asked him if he remembered our wedding day. He said no.
I am now terrified L
Unknowns right now: Not sure if he can read. Not sure if he remembers anything. He seems to know at least certain facts. His personality seems the same.
Jan 20, 2014
I’m continuing to ask for prayers. As things unfold it is starting to appear Ricardo has no memory of any people or events prior to his stroke (he seems to remember certain facts with difficulty). I have hope that this may come back with time, but it’s scary for everyone, especially for him. Sorry to share the bad news
He does seem to remember me day to day and to remember things I have told him since waking up in the hospital. But no memory of life before the stroke. So hard…
Purely a guess (tomorrow he has an angiogram, so that may give better answers) from my whole two hours of reading I just did, but I am guessing it may be damage to the hypocampus from lack of oxygen during the hemorrage which has damaged his episodic memory. He seems (so far) to be able to create new episodic memories, but that can be controlled by something else.
This is what wikipedia says about episodic memory if this helps: “Episodic memory is the memory of autobiographical events (times, places, associated emotions, and other contextual who, what, when, where, why knowledge) that can be explicitly stated. It is the collection of past personal experiences that occurred at a particular time and place. For example, if you remember the party on your 6th birthday, this is an episodic memory. They allow you to figuratively travel back in time to remember the event that took place at that particular time and place.”
So that’s my guess at what was damaged. I’ll let you know when I know more though.
[a little later]… I was talking to the Neurosurgery team and they were saying that it is still too early to put Ricardo in a box and say what will and won’t improve. They said we will get a much better picture as more time goes on and they are able to track him over more time. That give me some hope
Jan 20, 2014
hi!! please tell me when u are ready to chat via skype
If i had to guess from my hour of reading I would guess it’s damage to his hippocampus that has damaged his episodic memory. I think his episodic memory from the past has been damaged but that he can create new episodic memories. That’s my guess.
i think it too
At least it appears thus far that he can create new memories. We can hope for that. And we can hope that the rest will come back. It could be temporary. Man I’m praying it is. This is rough!
I showed him something written down and he told me he could read it
so that is good on that front
i wrote his name and he knew it was his name
I said, what does this say, and he pointed to himself
i wrote andrews name and he mimed “you, me, little person”
i wrote my name and he pointed to me
so that’s good
He doesn’t seem to remember any people or events from his life previously. I swear he did remember me early on, like the 18th and 19th of December.
Jan 21, 2014-
I’m feeling better about things. They said they won’t know for a long time what things Ricardo will be able to regain and the things they think he won’t regain.
Jan 21, 2014
Maybe I should post updates on Ricardo a little less often You all are getting a ride on my emotional roller coaster I feel more hope today again. He still isn’t remembering any people or events from his past but the neuro team wasn’t so concerned. They said I need to be more patient and realize that it is going to be many more months until they really will be able to say what things he won’t ever be able to do. It’s too soon for me to be putting limitations on him and there is a lot of confusion right now for him. Patience. I need to relax and be more patient. He has to relearn things as simple as brushing his hair I’m realizing, so there seems to be quite a lot of confusion. And they say that with time and work a lot of that confusion will resolve. So, it’s too soon to be putting limits on him. I have to remember that. Baby steps. Welcome to brain trauma 101 my friends
Jan 21, 2014
More good news…Ricardo had an angiogram today. The best possible outcome was what we got There is no remaining AVM so far as they can tell and arteries that were previously feeding the AVM are reduced in size compared to 1.5 months ago. They see no risk for a repeat hemorrhage so far as they can tell. They also saw no areas of the brain that were visibly damaged (the Doctor said that how Ricardo‘s recovery goes is actually more telling as far as what damage was done or not done, but there at least is no damage so severe that it was noticeable in the angiogram). All good news He will have a repeat angiogram in 1 year. But I now officially am hoping that this nightmare may have an actual end in sight as soon as Ricardo can recover from this as much as he is able. Huge sigh of relief…
Jan 23, 2014
Another good day for Ricardo. A few frustrating things, but lots and lots of good things. He was telling me he was remembering a little more! And tomorrow he goes to rehab! So excited!
Jan 25, 2014
Andrew and Ricardo saw each other for the first time today since Ricardo’s stroke. It felt so good to be together as a family again I’m so happy to have Ricardo in rehab! Thanks for your support everyone!
Feb 3, 2014
Ricardo is still getting better little by little. He has made huge progress in rehab though! He is walking with help now and today he climbed a few stairs. So, HUGE progress! Yesterday he mouthed the words “I love you back” to me And the day before that he mouthed the very first word that I actually understood well, which was the name of his friend Patrick. His memory is still poor but it has improved a lot! He is remembering people better now and a little bit more about his life. So, he is making huge progress! It feels like it has been 7 months but tomorrow will be 7 weeks since Ricardo‘s stroke. He has gone from barely wiggling his toes to now starting to climb stairs a little, from us wondering every moment of every day if he was going to make it through the day to now being stable, from us wondering if he would ever be able to communicate or even know what was going on around him to him smiling at his family and telling me he loves me. This has been the hardest thing I have ever been through, but I am so grateful for all the support from everyone, and I am SO very grateful Ricardo is getting better!
Feb 5, 2014
I haven’t been this giddy in a long time! They were able to take Ricardo‘s trach tube out and he can TALK! So much happiness! So good to hear his voice after almost 2 months! Oh life is going to be okay.
Feb 12, 2014
I haven’t updated in a while. Ricardo should be coming home sometime between the 20th-25th of February, then he will do out patient rehab for several months! So excited! He is getting better every day! It is so great to hear him speaking! He is now walking up and down stairs, getting in and out of cars, carrying about 15 lbs., doing well with his activities of daily living, and even playing some soccer He still needs someone with him helping him keep his balance, but it is amazing how much he has progressed! Current issues: He has some aphasia–he mostly makes sense when he talks but sometimes he cannot communicate what he is thinking and will say things that don’t make sense. His memory is improving, but he still has quite a bit of amnesia (both short term and long term memory issues, but he is remembering more than a few weeks ago). Cognitive issues and learning issues may exist, but they are not ready to assess that yet (due to the aphasia). He is improving every day!
Feb 18, 2014
I can officially say Ricardo is coming home today (Tuesday)!!! I am so very excited to have my family back together again and have Ricardo home I have waited for this day for the longest 2 months and 1 day of my life! Ricardo has been recovering so much faster than expected given what happened, and I just feel really excited that today we are taking another huge step towards a normal, happy life again.— with Ricardo Torres.
Feb 27, 2014
Ricardo is still improving and will continue doing out patient rehab for a number of months. Physically he needs almost no assistance now and everything else continues to improve daily. There are still a lot of unknowns but the good news is that he continues to make lots of progress. It is just so great to see him doing so well and to have him home
In addition, there are a handful of blog posts I wrote, which I can include, and there are these things I also remember:
February when he came home, I was walking around the house with him with a belt on his waist to help him. I was telling him when to eat, and making sure he ate cautiously. He still didn’t have much of an appetite since all he had been eating for a while was what he got in the feeding tube.
Beginning of April he couldn’t even take the more complex neuro psychology test.
April I believe we had his last nuerosurgeon appointment where he was cleared and told he only needed to come back if there was a problem.
April sometime he started remembering some details of our actual wedding. Before that he made up a story in march about our wedding.
By May he could sometimes remember major appointments without writing them down.
June, he started no longer needing reminders to eat a drink.
In July he traveled alone.
By September his expressive communication had come along to the point he was able to tell people he had suffered a stroke and tell them what he did for work.