This morning, I explained to Ariel that today was April Fool’s Day, because they have a similar concept in Argentina, Dia de los inocentes, at a completely different time of year. I said that most likely they don’t do April Fool’s in the Neuro ICU.
I was wrong.
The super neurosurgeon boss came and scared me out of my wits today, basically telling us not to hope for much. I tried to fight through my shock and grief to stay lucid. And then he said something about a second stroke on the dominant side. And I was like, no, his first stroke was on the left side, and the second was on the right.
He left and came back 5 minutes later, apologized because he had confused Ignacio with another brain bleed patient. Are you really kidding me?
He said that he’s gone back and reviewed his last scan from every angle, and that God must have been looking out for him when he had the second stroke, because it happened in such a way that, even though he bled a lot, there was almost no damage to brain tissue. It means that his recovery is much more difficult, and much slower, but it’s not the dire prediction that he made when he came talking to me about some other poor person’s brain scan. Can this really be happening?
Ignacio seems to be depressed right now. We haven’t explained about a second stroke, but he senses the setback, we think. He’s intubated, can’t move or talk, and is not interacting as much with his hand and his eyes. Everyone has sent so many prayers, so much love, so much support, so much everything already, but he needs more. He really needs a set of miracles to get through this ok. Please, if you have any miracles in the bank, consider calling them in on Ignacio’s behalf. Thank you!
Writing this helps me digest what happened in a terrible day (and many days are really not great) and put it in a form that I can manage to recount, and you can hopefully somewhat enjoy reading, even when it’s painful. I can’t do that verbally. It hurts too much and it’s too raw. That’s why it’s great to tell me that you’re praying for Ignacio, or loving him, thinking about him, and looking forward to dancing with him again, instead of asking me how he is.
April 2
We arrived today to find that they had turned off Ignacio’s sedation at 6 am. Three hours without it, and he’s a different person. Muuuuuuuch more interactive. I asked if he wanted to listen to Cucuza, and he nodded yes.
I love listening to music with him. Before the second stroke, we would listen to tango together and tap out the syncopas, the marcatos, the important accents on each other’s hands. It was like dancing with him, sharing what we each hear, enjoying the music together. I think we’re moving toward getting back to that tapping.
Yesterday, he wasn’t breathing “over the vent.” He wasn’t showing signs that he would be ok breathing without the ventilator. Oh, that scared us. But today he is responding well, as they test his ability to breathe on his own, and wean him from the vent. We are so thrilled about this. He won’t be off the vent today or probably tomorrow, but possibly Thursday.
And today, after three hours without sedation, he nailed his neuro test. Every single thing the doc asked, he did right away. When he’s sedated and/or withdrawn, he ignores the doctors completely and Ariel and I are there like, but, but but… but he just did that on command five minutes ago. He is so Ignacio. We talk to him outside of doctor time about how important it is to “darles bola,” but do you think he cares?
In any case, the doctors are now very happy with how he quickly he has bounced back after the second stroke, and hope is once again abundant. My heart is begging for no more shocks and surprises. But Becky, my friend the neurologist who advises us, says: this is Ignacio - he is just full of surprises. He is always going to do his own thing, and that’s who he is. I’m ready for a bunch of good surprises now, please.
Thank you for all the love and the prayers that you are sending him. Every day from Friday through yesterday was abjectly horrible, but today is a good day, with positive signs. Thank God.
April 3
We arrived today to find that they want to extubate Ignacio today. YAY! But he’s so frickin’ drugged up that we can’t get him enough awake for them to do it. OY! If you’re connecting with him or thinking about him, please imagine him CONSCIOUS, active, dancing, talking, and BREATHING on his own to help him get through this process today. It is huge for him.
We never had time to watch the Tango en la Terraza concerts together, so I just put on the Cucuza / Mateo concert for him. He’s holding the phone up, even though he’s still asleep. That’s Ignacio! Many of you, but not all, know about the concerts that Yael Szmulewicz, Juan Villarreal, Tan Kurttekin and I produced during the pandemic. They’re available free online. Please find time to watch them.
And, of course, please tune in this Sunday, April 7 at 1 pm Philadelphia | 2 pm Buenos Aires for the Live Streaming Solidarity Concert benefiting Ignacio.
Ignacio is extubated and doing great. Thanks to everyone who visualized that before it happened.
The super neurosurgeon boss who nearly stopped my heart on April Fool’s Day came by and made a very stupid joke… if it’s Monday, Wednesday or Friday, Ignacio is intubated, and if it’s Tuesday, Thursday, Saturday, then he’s not. Yay for Spanish. Instead of translating what he said, I told Ignacio that he’s the super doctor, but that he’s trying to make a joke, and he’s a disaster with jokes. After that, I did translate him, when he said that Ignacio looks amazingly good and is doing super well and moving toward going to rehabilitation. He left the room, and Ariel said, yeah, when the doctor tries to make a joke, you just have to give him a thumbs up and nod your head, because he really isn’t funny. Ignacio arranged his face in a super-sarcastic expression, rolled his eyes and gave a somewhat diagonal thumbs up, perfectly humoring the not-funny doctor. I went running out into the hall silently cheering because that’s Ignacio, and he’s back.
Ariel send me this while I was working in the waiting room: “Está bravo el gordo que ahora tiene conciencia. Se sacó el oxigeno del dedo, la mascarilla de la nebulización y los adhesivos del talón. El oxigeno ahora se lo pusieron en la oreja.”
Translation: “He’s a handful now that he’s conscious. He took the oxygen monitor off his thumb, the nebulization mask off his face, and the bandages off his heel. They had to put the oxygen monitor in his ear now.”
April 4
It was just three days ago that the doctor scared me to death, telling me that we pretty much shouldn’t have hope… and then came back to apologize, saying he had mixed up two patients. How long is it going to take to get over these shocks? Nearly losing Ignacio the night of the first stroke, again thinking I had lost him last Friday, when he had a second stroke, and then having the doctor tell me that on Monday. Three times. Enough already!
It’s hard to believe that all that happened, because Ignacio has made it all the way back in his recovery to be pretty much the same, or perhaps better, than last Thursday before the second stroke. I asked for a miracle and I got one. Thank you again to all of you out there thinking about Ignacio, praying for him, sending healing vibes. Thank you so much!
He is definitely struggling with mood. He’s taking in the whole situation more completely than at any other moment since this started, and the reality is hard to deal with. But Ariel and I are supporting him and helping him cope. Once he can start physical, occupational, speech and every other kind of therapy, he’ll have a positive focus for his energy and anger, and they will be huge assets for his recovery.
April 5
Today was a good day. We feared that the doctors were going to push to clamp Ignacio’s drain again, forcing his brain to drain all the blood and cerebral spinal fluid on its own, without help. They’ve tried to achieve that twice already and both times were disastrous.
No, we heard today that they’re going to take it more slowly now. That they realize that every time they rush Ignacio, it goes badly. We are so incredibly relieved.
Finally, two weeks after Ariel arrived, and four weeks after this all started, I’m going to take a few hours at home tomorrow morning. For the first time in four weeks. Wow!
April 6
A late update on April 6, written on April 7… yesterday was CALM! I can’t remember the last time we had a calm day. Ignacio is working on clearing the blood from his head, and trying to stay patient. He prefers to work himself into a diagonal position in the bed and he spent a good part of the afternoon doing informal physical therapy, pushing me with his strong leg (and I made him push me a couple times with his weak leg, which he kind of did).
Right now, he has more aphasia than I had thought. He understands what I say to him, but struggles to find words. Two days in a row, he has said that his name is “Don Carlo.” If I hadn’t read Dr. Jill Bolte Taylor’s book about how she lost all language, as well as many other faculties, and through years of hard work, regained them all, I would be freaking out. But the whole thing about this process is that you don’t know what’s possible or impossible until you try, and until you try over a very long period of time. (For Dr. Taylor, it took eight years to regain full capacity.) It’s amazing how I enjoy and how much it nourishes me, to have any interaction with him. I, too, am changing a lot as a result of all of this.
April 7
Today is the day! Join us at 1 pm Philly time, 14 hs Buenos Aires, 19 hs much of Europe, for a livestream solidarity concert benefiting Ignacio. JOIN HERE. Of course, donations are welcome. But even more, it’s the fact of everyone coming together from anyeverywhere in the world to focus on Ignacio, to sing to and with him, to imagine him dancing again, to focus all our energy on his recovery. I know that it’s a busy spring / fall afternoon when everyone has something going on, but make sure to tune in for a few minutes at some point from your phone at least, and write in the chat to let us know you’re there. The concert will remain online and you can watch it in its entirety at a convenient moment.
Thank you so much to everyone who joined and supported the livestream for Ignacio yesterday. You can watch it any time here. And huge thanks to Yael, Tan, Kevin, Juan, Pato, Ezequiel, Guido, Gustavo, Gaston, Gri, Matias, and Julieta, for performing and producing the event. So grateful to you all!
Today, Ignacio had a procedure to put a “peg” in his stomach. He is still far from being strong enough to eat three meals a day and get his nutrition by mouth, so this will be a better temporary solution to get him the nutrients he needs. Ariel has kept calling him “el gordo,” but he’s not. I’m hoping he will get back there a bit with the peg.
We’ve been asking the doctors a lot about his prospects. And the answer is consistent: it’s way too early to tell. The kind of strokes he suffered, especially the first, were big events, and he really needs a lot of time, first, and then a lot lot lot of rehabilitation, second, to recover all that he can. They sound optimistic when they talk about all of this, and so we are too.
I say “we,” but Ariel is at JFK now, on his way back to Argentina. It has been AMAZING having him here and I am sad that he is going. But he will come back in May to be here for Ignacio during the festival, so that the festival can take place.
April 10
I’m sorry I didn’t write yesterday!
Everything has slowed down to a crawl here. They’re still trying to figure out how to proceed with taking out the drain, the EVD, from Ignacio’s head. Until that part gets resolved, we are in a holding pattern.
Two days ago, they put a “peg” in Ignacio’s stomach to be able to give him better nutrition directly, until he is up for eating three big meals a day. The procedure / aftermath were more painful than I expected, and he was frazzled yesterday from the pain. Today, he is wiped out from its aftermath, I think.
I was so lucky to have Ariel here for 2.5 weeks, and Monica arrives tomorrow for 10 days. Thank goodness!
Writing now from the end of the day. It was a difficult beginning of the day with Ignacio so exhausted that he refused to wake up. Worried expressions on everyone’s faces. I think he was worn out from the surgery to place the peg, and more pain than I had expected from that, and also some experiments with his drain yesterday.
When he finally woke up after noon, and progressively more this afternoon, he increasingly became more and more lucid until he was the clearest I’ve seen him since all this began. We listened to music together (he chose Di Sarli), we stared into each other’s eyes, we talked a bit, and he gave me some of those hilarious expressions that I recounted from when Ariel was here. I initially missed the fact that he wanted Di Sarli, and he rolled his eyes and blew air out his mouth like “Que boluda!” And when I told him that the school was open, even though neither he nor I was teaching, he maintained a look of absolute shock, like “What the living hell?” for a good minute. I just love it so much when he makes me laugh.
And when he gives me a kiss, which he did many times today, I still literally swoon. What is this love that is so encompassing?
On the more technical side, he has less fluid draining from his head now, and a much clearer color (less blood). This looks very good for moving toward taking out the drain, and hopefully not doing surgery to place a shunt. If you are praying for him, or visualizing for him, this outcome would be a great thing to wish for.
April 11
THANK GOODNESS MONICA IS HERE! She arrived from Buenos Aires a bit after noon today, and by 4:30 pm was at the hospital with us. She immediately started teaching Ignacio how to breathe better, focusing more on the exhale, and letting the inhale happen naturally. Both of us calmed down significantly.
The nature of brain injuries is that progress is slow, and with lots of waxing and waning along the way. Every time Ignacio gets to a place like yesterday afternoon, full of interaction and humor, I trick myself at some level into thinking that that is his new base. But no, he inevitably falls back from that, before eventually taking more steps forward. The level of patience that this takes… just extraordinary.
There’s a lot going on with trying to get his Medicaid approved, and it has huge consequences for his future, but I don’t feel like I can go into it now. If you have influence with whatever gods there are that deal with Medicaid, insurance, rehabilitation, and liquidity, please put in a good word for us. In addition to your prayers, we have two offices at the hospital working on it, and three offices of our elected representatives (thank you to the Fishtown BID for helping us make the connections), as well as a good health insurance broker. We are not only going on prayers, don’t worry! We’re doing everything, but could still use some good energy sent our way.
April 12
Today is my birthday and it really started out beautifully. Ignacio said “Hola, mi amor,” to me for the first time since all this began. He greeted the doctor, “Hola, doctora.” He got surprised all over again that Monica was here, “Wowwwwwwww.” The doctors were thrilled. He has generally made it a policy to zone out when they’re around, but today he was like the model patient.
Later, the head neurosurgeon came by and we talked about Ignacio, about how well the plan was going to SLOWLY test him with less drainage, by increasing the height of the drain (so that he only drains fluid when his intracranial pressure surpasses a certain, now higher number). We talked about the whole plan, 48 hours at such number, then 48 hours at another number, etc. Then, after the weekend, on Monday, evaluate and look to make a decision about how to proceed. Step by step, totally on the same page.
I took a couple hours away from the hospital (Monica was with him), ideally to work, but I was too tired. I took a bath, read a bit, didn’t get much work done…
I go back to the hospital, and after awhile, notice that someone has gone and jumped the gun and raised the pressure at the wrong time. It’s not ok, because it would mean him being tested out with his brain withstanding more pressure in the middle of the night, when I’m not allowed to be there, and really, who knows if a nurse who doesn’t know him is going to notice if he starts to go sideways. Like he’s gone every other time they’ve raised the pressure? Like the time they raised the pressure and he ended up having a second stroke? Most likely, the nurse is not going to notice. And so he could be struggling, doing badly, for, well, already 16 hours by the time I’m allowed to go back in the morning.
You would think this problem would be easy to solve. I had talked with the head neurosurgeon. We had a plan. We agreed on a plan. But it took hours and hours of advocacy, to finally make the situation right and get them to return to the agreed-upon number. Hours that were supposed to be my birthday dinner. We finally went, Monica and me, but I was so tired that it was definitely harder to enjoy it.
Five weeks already. Five weeks of nonstop struggle to give Ignacio the best chance to survive, to thrive, to regain his life. This has got to get a little bit easier soon, please.
And by the way, Ignacio is the cutest boyfriend in the world.
April 13
Today the Ignacio that we know and love started to come back for real. He was very present this morning, and when the doctors came, he seemed to enjoy being the center of attention for the first time. Ignacio loves to make other people happy, and that finally came through today. Whatever the doctors asked, he did it. And then he wanted to show everyone how he could win at “pulsera china” (thumby war) against Monica. No one has a chance against him, if he’s using his left hand. The right hand will need a lot of rehab, but I’m sure he’ll eventually beat us with that one too.
I left the hospital and left Monica in charge.
Up until now, Ignacio has said a few words at a time, at most, and was largely not speaking.
By early afternoon, I started to get these messages from Monica that I couldn’t believe. He was telling her long stories (some crazy made-up stories, but with real words), and having long conversations with her (real, sensical conversations).
Finally, I got a message, which was a voice WhatsApp that he had sent to his friend Daniel. I thought it had been created with artificial intelligence. It was Ignacio’s voice, but talking like normal, like he used to. "Que haces, nene?", he started, and went on from there. But the SOUND of his voice, like that, I thought I would never hear it again.
I promptly started BAWLING.
I sent it to his brother, and he’s listened to the message 40 times. We can’t believe it.
This is a great time to once again pray and send strength to Ignacio. He’s made this HUGE progress, but now has to succeed at a HUGE task, which he has not been able to succeed at three times previously. His brain needs to be able to start managing his cerebral spinal fluid and the remnants of blood left from both strokes, without the aid of the external drain. He needs to do this and it needs to happen in the next few days. Otherwise, he’s looking at neurosurgery to place a permanent shunt (drain) and a lot more risk and potential for complicated outcomes. If you have time and energy to pray or visualize for Ignacio, please imagine him managing this transition successfully. Then we move forward with all the rehabilitation and recovery.
Thank you so much to everyone reading these updates, thinking about Ignacio, praying for him, sending strength to him, everything.
April 14
Another good day.
The doctors asked Ignacio his name, and he took a breath and said, “Ignacio Santiago Ondartz.” Music to all our ears!
We spent part of the day playing catch, which I bet you aren’t supposed to do in the ICU. And not so easy when your hand is restrained so you don’t pull out your tubes and cables. But yes, we played catch.
Ignacio was quite disgruntled today about not being able to get up and out of bed. It was a constant challenge to convince him to stay in bed, and stay calm. One of the things I love best about Argentina and Argentines is that they are absolutely incredible at cursing, world class. They are so much more creative and elaborate than we are and I appreciate it so much. Ignacio’s vocabulary is coming back in bit and pieces, except his cursing, which has come back 100% and full throttle.
This is out of order, but if I don’t write it, I surely will forget. Yesterday, while listening to Di Sarli-Rufino, he sang to me from “En un beso la vida.” It’s true - all of life in one kiss.
Becky, our neurologist tanguera friend, saw him at the end of the day and was overwhelmed by the progress that he has made. It’s really extraordinary.
Tomorrow morning, we’ll hear what the neurosurgeons want to do about clamping or taking out his drain. This is a big, big, big moment for us.
April 16
Yesterday (April 15) was like a microcosm of the past 5.5 weeks. There were the beautiful moments, like when Ignacio led Ines, Corina and me in singing Zamba por vos (after 10 minutes before having asked Monica and me, “What is singing?”). There were the horrific moments like when the patient across the hall, another forty-something year old Latino man, who had also had a hemorrhagic stroke, passed away. There were the frustrations… the only way for Ignacio to get back to being Ignacio is to go through intense rehabilitation in an acute rehab facility. But we can’t work that out until we get insurance lined up (Medicaid or private) and that situation continues to be in the air. Every hour that passes that we don’t know where Ignacio will go in 2-3 weeks, and how he will get the help he needs, it becomes harder to control my anxiety. There was fear… Ignacio’s EVD (drain from his brain) is now clamped and we are truly testing whether he can get by without external draining support. It was in this situation last time that he had a second stroke. The numbers indicate, and I believe, that he will succeed this time, but until he does, I will be afraid and worried, especially when I have to leave him for the night. Two hours after they clamped the drain, Ignacio went from speaking very coherently and lucidly to not making any sense. These ups and downs are normal with brain injuries, but can also be a sign of a big problem. Most times, the doctors can’t say definitively which is which. So I got really worried. The speech therapist (who is mainly helping him rebuild his swallowing muscles for now) decided to go forward with their session anyways. Ignacio did perk up and swallow like a champ, but he still was making no sense. Until finally I caught onto one word and then another and another… Ignacio was not not making sense. He was trying to speak to the therapist in English. And he had not encountered any of the words before, so he was twisting up Spanish words into English. He was just trying to ask what the objective of the exercise was. He was doing the exact same fucking thing that I do to him and to Monica and to everyone every day… in my case, substituting Spanish-ified English words for the Spanish words I don’t know. Makes me think of the Say No to Drugs commercial from the 80s. “I learned it by watching YOU dad. I learned it by watching you!”
All that happened and so much more. He greeted the doctors yesterday morning like they were his long lost best friends. You should have seen their faces. He understood the accented English of his Indian nurse last night, when the previous night he had not understood her at all. People keep turning to me and saying, “But he DOES speak English. You said he didn’t.” And I just shrug.
Yesterday also, Ignacio started moving his right arm and hand enough for it also to be a grab worry. This is incredible. He has had no physical rehab yet, but he has been rehabilitating himself in that bed. Using his left leg to move his right, getting the right to respond. And yesterday, grabbing his right hand with his left and starting to try to wake it up.
And what does he get for all this effort? By last night, because he kept trying to get out of bed, he was doubly restrained and wearing a big-ass glove on his left hand… the only way to keep him from doing himself harm, when he still has the extreme vulnerability of a drain in his brain, and a gazillion more tubes and cables that he could pull out in an instant. He is FAST, STRONG and NAUGHTY.
He started to FREAK OUT. Ignacio decided years ago that what was most important to him was his independence. He took apart the aspects of his life that forced him to live by someone else’s schedule or rules, and created a life where he made all his decisions. That is also the premise of our relationship - we don’t control each other. All through his hospital stay, I’ve promised that he is welcome to leave me for some “other colorada” at the end of all this. So for him to be doubly restrained, and have no ability to touch with his left hand, the hand that has been his gateway to feeling, connection, LIFE, through the worst times (for example, during intubation), was the worst thing that could happen to him. He fought and fought and fought. Doubly restrained he could somehow nearly get out of the bed, even after he was given drugs to relax him.
I explained and explained and explained and he would understand me each time for four seconds, and then rear back up.
All the emotions of the past 5.5 weeks all of a sudden couldn’t be held back, and I started to weep uncontrollably. I told him, “I want to rewind the clock one year. I just want to be with you in La Viruta.” And I cried and cried and cried. Shanti, his nurse, whose name means “Peace,” calmed him down, but not me. I said goodbye and cried through the hospital, cried through the drive home, parked and cried. There was no way to walk through Ines and Corina’s workshop (thank you to everyone for coming!) so I cried down Frankford Ave. Monica met me and we had dinner and a beer. I stopped crying for a while. Came back home and cried and am still crying this morning.
I was about to say I wasn’t crying anymore, but then I nearly cried from happiness. Haha! Dr. Villanueva, the super neurosurgeon jefe, just came by. Ignacio’s scan this morning showed the greatest decrease in blood in the brain that he’s seen between scan and scan. The way he said it, I almost imagined he meant in his life, but probably he was just talking about Ignacio’s scans. I’ll take it. Ignacio barely has any of that errant blood left in his brain. He has nearly cleared all the blood from both strokes.
His intracranial pressure has maintained very, very well through 1.5 days with his drain clamped. He has never exceeded the maximum situation that they believe is safe. So tomorrow, assuming everything continues like this, they will take out the drain, and Ignacio will be hardwareless in his brain for the first time in 5.5 weeks.
Tomorrow morning, it sounds like physical therapy will finally come see him, even though the drain probably comes out a bit later in the day. And on Thursday, we start all of our rehab in earnest. We get out of this frickin’ bed for the first time in 5.5 weeks. VAMOOOOOOOOOSSSSSSSSSSSSSSSSSS!!!
Thank you all so much for all your help and support.
Philadelphia Argentine Tango School 2030 Frankford Avenue Philadelphia, PA 19125 617-291-3798 [email protected]