Hey everyone. I was going to try and make this update thing a weekly event, but I am just too excited and felt like today was a great day in terms of Tintin‘s progress. It’s been a few days since her Solumedrol steroid treatment completed, and today she started her plasmapheresis treatment, which they will run for 5 days and then depending on her progress, they may choose to do a few more days of it, but her doctors are liking what she’s already showing them. It seems like her motorskills and level of communication have increased 10-fold over night, and keep in mind that this is before today’s start on the plasma infusion. My Mom and Nini came to visit her this morning, to find her with her new neck catheter installed (for the plasmapheresis), which is of course kinda scary to see, but you understand why it’s there. After a little bit of command exercises to wake up her brain, her motor was up and running. She was eating for them, which she has been increasing her food intake each day, and has been able to chew and swallow much more deliberately as if it’s back to being a natural process. She’s not gonna starve, that’s for sure! For the past few days she’s been able to follow my simple commands of “smile” or “show me your teeth”, but she struggled with stuff like “grab my hand” or “close your eyes”. It goes to show you how intricate and delicate the brain really is. So get this. During this morning’s interactions, Tin sits up and points at Nini’s water flask like she wants it. My Mom slides the table over to her and asks if she wants it. Tin sort of points and nods and my Mom hands her, hers, and she proceeds to hold the 40 oz. flask up to her mouth and take a sip out of it, all by herself! Just 24 hrs. before, she could barely hold a sippy cup up to her mouth. Shocked would be an understatement! It gets better. Lunch time comes around and they hold up the room service menu for her, and she starts pointing out exactly what she wants. PB&J sandwich, a coke (which she actually said coke), and French fries. Wtf?! Who is this new person? Oh, it doesn’t stop there. So, the fries come, and what does she do? Starts picking up her fries, dips them in ketchup and feeds them to herself. She was eating soft mashed up food just a few days before. If this isn’t a sign of things moving in the right direction, then I don’t know what is. I can’t begin to tell you how proud I am of her progress, and this is all before this crazy bionic plasmapheresis stuff was even started.
Her administering of new plasma was a cool thing to see. It’s done similarly to dialysis, where they pump in new plasma and they take out some of hers. The new plasma will take the wheel of her plasma and teach her auto-immune system to get back to work, fighting off viruses and infections. Oh, and we finally got an official diagnosis based on her lumbar puncture lab results, and she tested positive for Anti-NMDA Receptor Encephalitis. That means that Neurologist Dr. Rosenberg from Magan and Inter-Community, who first suspected that and treated her, was right in that she did have it. That’s great, and means they can continue down this path more confidently. There is such a sigh of relief right now from me. She’s more healthier, responsive, alert, hungry, and still sweet as ever. I ask her for kisses and she puckers right up…Sometimes slipping some tongue in there 😑. Mmhmm. Blame it on the brain ticks, lol. Speaking of ticks, the only one left that I notice, is her chewing while asleep mostly. Sometimes while awake. Looks like a junky who needs a fix lol. It’s probably related to some of the meds. Not quite sure, but it’s minimal. Tonight, her nurse came in and asked her to perform tasks for her and she pretty much was capable of doing them all. Holding up hands, squeezing fingers, wiggling toes, nodding yes and no, and she was even able to answer “yep” to a question. All major improvements for her. She has started working with the physical and occupational therapists on getting these functions going, and we’re gonna continue to keep it up. They brought a recliner chair into her room, and she likes sitting in it when she can. I’m sure it’s a nice change from laying in the bed all day. She’s a trooper.
So yeah, this week was full of a bunch of small advances, until today when it seemed to just take 10 steps forward. So nice, and a long way from almost 3 weeks ago when we were taking 2 steps forward and 1 step back almost every day. I hope this keeps up, and she improves even more rapidly after this plasmapheresis phase. I’m crossing my fingers!
I want to thank everyone who has followed her on this crazy journey. Her eyes lit up when I told her that her story got over 700 views on my blog in 24 hrs. That’s all you guys checking in on her. Every like, comment, and share, will be there for her to see when she gets better, and you know this gentle sweet girl just wants to be liked, loved, and accepted by everyone. Why else do you think she puts herself out there unconditionally for so many of us? Because she wants…No…She needs to be loved. I don’t ask people for anything, but I would like to ask you all to show her some love! It’s her lifeblood. It’s her energy. It’s her soul. Thank you everyone for the love and support.
Hey everyone, just a quick update on Tintin. She's settling in at the new hospital, and wow is Huntington impressive! She had a lumbar puncture yesterday morning, and that went without a hitch. She hasn't had any swallowing, heart stoppages or respiratory issues either, since the day before she left Inter-Community. Her brain seems to be healing the involuntary action stuff that we take for granted! She's finally sleeping again, and Lord knows the brain needs that. She is mostly coherent in terms of looking and following us around the room, and she is trying real hard to find her words. You can see the struggle in her facial expressions, which she has many. The most popular seems to be the "wtf" face, which I'm sure is due to me talking too much. The neurologist started to ramp up the Solumedrol steroids in hopes that there will be more improvement. In 5 days he will see if they will advance to an IVIG treatment, which basically inserts another person's perfectly working immune system into her body through a blood transfusion, that will teach hers to work properly again. Ever since I posted up her story the other day, I've gotten so many responses, and well wishes, and personal msg's, and I'm just overjoyed by all of it. I even got a special msg from a friend of an old family friend, Melissa Scheliga, who my Mom used to babysit when we were kids, and this friend of hers named Carla Cassia, went through this same ordeal back in 2009. She was diagnosed with Auto-immune Encephalitis; Cause unknown. It was so reassuring to know that this is something that you can recover from, albeit after some time, but mainly I wanted to know if Tintin could hear us even though she can't communicate, and she said most definitely. Carla said she could hear and understand everything while she was coherent, but she was unable to talk and find the words she needed to say. That was all I needed to know, so that way we can at least let her know that we know she can hear us. Once we told her that, it's as if she became more calm and patient with us. No resistance or struggles, and also less shaking episodes. This is all progress, and we're happy. She was even smiling for the selfies which I posted for you all to see! I know it's a far comparison from how you're used to seeing her, but it's 100x better than where she's been for the past few weeks. We'll take it! Right now, her food is getting cold, but she's knocked out asleep, and there'll always be more food! Sleep is nature's best method for healing the brain! Keep her in your thoughts, and prayers. Appreciate you all. 🙌🏽🙏🏽❤️
Hey guys, so some of you have heard some stuff, but I realize that many still haven’t. My sweetie Tintin has been sick with what we now know is a form of auto-immune encephalitis. We’re just doing what we can for her, and keeping her as comfortable and calm as we can. I’m so sorry to not keep most of you in the loop on this, but I’ve been preoccupied with so much, and sometimes I just don’t want to initiate the sadness that comes with a message like this, but also it’s because I know we have a lot of friends who truly care for her and her well being, I know that I need to do my part to keep all of you informed. We don’t need anything at the moment, but just keep her in your thoughts and prayers for a speedy recovery. She’s already moving in a positive direction, even after going through hell for 2 weeks, and all we can do now is put our faith in the Dr.’s that will be taking charge of her recovery. I thought I would tell you the entire story from when this all first started, so if you care to know the whole ordeal up until now, then please continue reading over on my blog and Facebook…
We believe it started with an infection from a cut on her foot, that she got while in Vegas for the weekend. Days after, she had a swollen foot. Started on antibiotics, but then she started feeling very emotional and couldn’t stop crying. It led to an anxiety attack, and then she started to hear music in her head. She began to worry cause she knew something was wrong, but didn’t know what. She started to show signs of confusion as well, and we had to go to the ER for a bad panic attack on Wed. 7/19. Blood work came back negative. Diagnosis was Anxiety. Prescription for Xanax. Sent us on our way. Next day we left for the weekend, for Nini’s wedding, in which she was to be her Maid of Honor. You’ve seen her IG over the past year and you know this was just as important for her, as it was for Nini. She was calm all Thursday, as she was feeling the drugs I’m sure. She was confused, but functional. She forgot to pack a few things, as we discovered when we got to the hotel, but it was okay. All through the night, she wouldn’t sleep and just kept worrying about the music in her head and she just kept crying that something is wrong. Her meds were helping a little, but I did breathing exercises all night with her, to keep her calm. She never slept.
Friday 7/21, we head out to the rehearsal walk-through, and everything seems mellow. If we can just get through this, we should be good. Well, we got through most of it, but then she started to cry again and once she knew she was sort of making a scene around everyone, I had to walk her away back to the car, where the next panic attack set in, and this one was really physical and loud. She was screaming that we were missing the rehearsal, and she needed to be there. She was climbing over to my driver side and wanted to sit on my lap, and was turning up our music to full blast. She was trying to leave the car, and I had to hold her inside. I called my Mom, and basically she understood that this was getting worse, so she called Shawna, Sean, and my Dad, and they all took off up to Ventura to come and help me bring her back home. There’s no way we were going to make it through the weekend, and I decided to just call it right then and there. Paramedics came out to the venue and helped calm her down and assess her, and they also believed that this was something psychological that was causing this. I agreed. So after waiting awhile, we were able to get her back to the hotel with the help of Mimi and Randy, the sister and bro-in-law of Nini. Once there, it was a game of keeping her calm, until the family showed up. Keep in mind, we were all the way out near Ventura, about 2 hrs. away with traffic. She was surprised to see them show up, and of course she was already confused, and had already forgotten that we were at the rehearsal just hours before. I didn’t want to trigger her that we were leaving, but Mom and Shawna distracted her in the bathroom. They had her show them some new clothes, while we threw everything in our luggage and checked out. We said we were going to go eat lunch and check out the venue, but I think she knew we were going back home. She was calm all the way home, and said to my Mom, “Mom, something’s wrong”. My Mom replied, “Do you want to go to the Dr.’s?”, and she said yes. We were so relieved, because we assumed there was going to be no resistance once we got to the hospital, where we were hoping to get her admitted.
We headed straight for Inter-Community in Covina, since we knew they had a psych ward where she could be evaluated, but upon arrival to the ER, their triage team said due to her not being a harm to herself, or others, they couldn’t admit her. We were in a panic. They said she would need a Dr.’s referral of some sort, and suggested calling her regular Dr., which she has none, because we only go to urgent care as needed. Called Magan, and they said they don’t need to approve something like that. Great. We’re stuck in the middle here, with my girlfriend, who is on the verge of something she has no control of, and we need professional help. People are just such robots these days. Nobody bothers to think about what they can do for someone, instead of what they can’t do. By this time, Tintin is starting up again, worrying about not feeling right, and getting another anxiety attack in the ER waiting room. She starts asking everyone in the ER waiting room if they’re hurting, and one older gentleman had said yes, just being funny, and she asked him if she could give him a hug, all while she was sobbing uncontrollably. This is her demeanor, totally. You know her. Anyways, we decided to call Aurora Charter Oak, in Covina, which is the best place in the area to go to, for any type of mental health related issues, and they said to bring her down right away, and so we did. This was so tough for me, because she was already hysterical while driving over there, and she didn’t want to be taken out of the car, and she wanted me to carry her. They put her in a wheel chair, and I helped them wheel her down to the unit where she was to stay for evaluation, all the while kicking and screaming. I felt so bad, because she was screaming and crying “Don’t leave me”. It was the hardest thing I ever had to do.
So, thankfully they were able to get her consent to share information with me, so that way I could stay up to date with how she is doing. The first few days are just a lot of resistance, and fighting off everyone. She won’t sleep, and she won’t even get into her bed. Not eating either. On the 3rd day, which was a Monday, she was admitted to Inter-Community’s ER, due to dehydration. I arrive, and she is a hot mess. Hair is all messy. She has bruises on her legs, and scrapes on the tops of her toes, like she’s been scraping them, and her speech is still normal, but she’s yelling nonsense, like “I don’t like your french language” and stuff like that. She is clearly out of her mind, which is a hard thing to see, after knowing her better than anyone else for the past 11 years. She comes in and out of coherence, which I assume is just the Ativan that they have been giving her, because they chemically restrain her, instead of physically restrain her. It doesn’t work with her though. She fights through all of it. The ER stabilizes her and then sends her back to Charter Oak. This happens 4 times over the next week, each time, she is degrading even more. Loss of speech. Can’t say words. Mumbles, and hums. Still physically strong at times, and is able to walk and I even got her to eat one day while visiting, but then she started seizuring and locking up. She would get stiff and contort her foot. They ended up sending her back to the ER cause she was getting fevers of like 104. This time, the ER actually paid closer attention and was taking in to account her regression. Fucking finally! They admit her over night, while she is administered IV fluids and to observe her.
We would come in every day and try to interact with her, and we would start to record her episodes of seizures, and we were able to show them to her Dr. and the Dr. said this is something that looks Neurological, and wanted the Neurologist to come and assess her. He came in and said that he thinks he has seen it before, and it was something along the lines of an auto-immune encephalitis. Hey, we were willing to hear anything at this point, after over a week of nothing over at Charter Oak. After researching this auto-immune encephalitis, everything became much more clear to us, and I was putting all of the experience together, and YES, this seems to match up exactly with how she was reacting and how she was displaying psychological type problems, and going into a psychotic state, but it wasn’t for the reasons we had thought, like stress from the wedding, work, me lol, etc. It was already set into motion, and we were just treating it wrong the entire time. So, this is when the Neurologist decided to get her started on Solumedrol, a high-dose steroid, to help aide in whatever this is doing to her brain. Almost within 24 hrs. we started to see tiny signs of progress, like no seizures, and she was starting to focus on us more, and she was making facial expressions, although still talking to herself and not really recognizing us. She was also sleeping on her own. This was progress to us. The next day, she was starting to have longer times of being interactive and alert, but there are a few side effects that have been happening, one being that she gets over-stimulated very easily, and her heart rate can jump all the way up to 170, or as low as stopping, which it did 5 times one day, but since she was moved to the CCU (Cardiac Care Unit), I think she has had only one stoppage, and she has been hooked up to machines that have like an external pacemaker to keep the rhythms on time, but they also shock her if it drops to zero. I saw it do it once to her, and boy is that scary! She sits right up. The conversations and the mannerisms in her face and hands are improving. She has small windows of clarity, where she told her Mom yesterday “I haven’t seen you in a long time”. Hey, this is all progress. I can get her to kiss me sometimes, and she’ll actually pucker up sorta. She’s so cute. Her words are still not really there, and she has trouble adding subject matter to her sentences. The brain is busy, but it’s going to take more time for sure.
As of yesterday, her Dr. has decided to transfer her to Huntington Memorial, where she can get more advanced treatment for this. That’s great news, and hopefully she continues to improve. Nothing is for certain at this time, but this is where we are at right now.