10/01/2026
I never thought I would say that I am so happy to be moved into a hospital room, but when it means that we are no longer in the Pediatric Intensive Care Unit (PICU) and are back on the regular med/surg floor, it feels like a huge victory and something to certainly celebrate…The celebratory nature of arriving back up here is also due to the fact that leaving here, going into surgery, and then being down in the PICU were beyond stressful and in a most unnecessary way…
I have offered up a lot of kudos to the team throughout this stay, but I feel like I cannot say the same about what transpired from Thursday morning to Saturday evening when we arrived back up on the 6th floor. I stated in a previous post that I made abundantly clear that I had immensely justifiable concerns about Isadora and her respiratory status after surgery, as it is not only customary to be worried for ANY person with myotonic dystrophy to receive anesthesia, but especially concerning for us, given the family history. I believed that the doctor caring for her up in the regular unit was aware of this, and she was the one who assured me that there was a bed reserved in the PICU for Isadora, a plan we discussed many days before the surgery and even the morning of. Needless to say, I was a bit surprised when I started packing up all of our belongings from our mini medical studio apartment (AKA the hospital room that we had been living in for the last month) to move down to the PICU temporarily, hopefully, when the nurse said that perhaps that wasn’t necessary because it wasn’t certain we were going to be going to PICU, and she might be coming back up here right away after surgery…
Not only was I surprised by this notion, but I was also incredibly livid, as it seemed as though all of the collaboration and communication that I had trusted and was feeling confident in completely blew out the window when I realized that, once again, my complex child’s care was falling victim to the game of telephone, combined with people simply not reading the chart or paying attention to the history. I was fearful that she was going to a surgery where those caring for her were not aware of her condition and the caution that needed to be taken regarding her respiratory function, given the fact that Myotonic Dystrophy has a tendency to significantly cause a traffic jam between the brain and all of the muscles and activity required for respiration after being subjected to a multitude of paralytic chemicals to allow a machine to take over breathing temporarily during surgery...
After what can only be described as a clusterf*$@ of drama, MANY stern words of frustration and disappointment directed at her doctor, and me feeling like I was being gaslit, my little one did make it down to the operating room, assured that they were waiting for her in the PICU and the plan would be for her to be there as long as she needed to be to ensure her body was ready to start breathing again and she was stable overall, as I had originally believed. I was very relieved that the anesthesiologist who came to talk to us in pre-op listened to the brief history of my kids and their post-surgical respiratory circus acts, and she said, without hesitation, that she would not even consider extubating Isadora in the operating room and that she would be going straight to the PICU for full observation. She also planned on doing a different type of intubation after hearing a bit about Isadora’s heart defect history with her now-narrowed esophagus and weaker trachea, along with the reflux and delayed gastric emptying that she has been experiencing during this hospital stay and likely for some time due to her disease, and informed us that the technique she would use would minimize the risk of aspiration, which could ultimately be a fatal situation for Isadora. It was obviously an emotional pre-operative situation, but I did feel reassured by the time that she went back to the operating room, as it seemed like the providers did understand the gravity of the situation at hand, the trauma of our family history, and their responsibility not to add to it. I, of course, have said many times that I just needed her to make it through and to be treated with an abundance of caution, but I think Isadora also really hit that point home when she was asked by the surgeon just before going to the OR if she understood what was happening to her. She said with a completely straight face, “You’re going to place a G-tube, you’re going to take a scope and look inside of my esophagus and digestive system, stomach and intestines, you’re going to see if I need to have a GJ tube instead of a G-tube…And you’re not going to kill me.”
And that is precisely what they did.
Isadora was in the operating room for about two hours, and then we were able to go directly to her room where, thankfully, my mother, Susan, and Lukas had transferred all of our belongings, along with stashing some out in the car, since the little one was not likely doing many art projects while in intensive care. As fate would have it, she happened to be placed in the room right next door to where Gianna died, which I should’ve warned my mother of, as I knew it was the case exactly when they told me the room number. She told me she had a visceral reaction upon walking up to that room, and you would’ve thought my awareness of that fact would’ve prevented me from having the same experience, but nope— I also felt like I was about to vomit/pass out the second that I walked down that hall and 3133 came into view, also passing 3128, where Giacomo nearly died and lived for four months in 2019...
I also had to brace myself for the ICU provider that I knew was on service and would be receiving us, as she is one that we saw in the palliative care clinic not too long ago, where she earned a spot as one of the least favorable providers that I have ever encountered in a clinical or inpatient setting…The backstory: I first saw her with Lukas in the spring and shared the entire saga of our family situation. At that time, Lukas started to express some of his wishes, which included him not wanting to have a feeding tube or trach and basically not wanting any sort of heroic measures taken for him, as he is at peace with his disease and recognizes that when it comes for him, it comes for him, and he has already very clearly defined what “quality of life” means for him, wanting no interventions that may detract from that. After that visit, he and Isadora completed a document called “Voicing My Choices,” a health care directive-esque statement outlining how they desire things to go down when the end is creeping near. This is the same document that Gianna and Giacomo both completed with my mother’s and Rebeca, our family midwife’s assistance and without me having any part of it, very intentionally so that they would not be influenced by me in any way. I falsely assumed after that first visit with her that she understood our unique situation that includes the kids having a very firm grasp on the reality of their disease and autonomy in decision-making, but all of that turned out to be false, first when she shared that she works in both intensive and palliative care, something I personally found to be odd (and potentially problematic), as they are very much on opposite sides of the medical spectrum in my opinion. The real issue with her as a provider then became even more clear when Isadora told her that she was not interested in having a trach either, something she is VERY informed about, having witnessed Giacomo get one to save his life, and then live with it for over 5.5 years. I assumed that this doc would understand Isadora’s decision, but instead, her reaction?? “Why not? It’s not that big of a deal.” Are you kidding me??! Not a big deal???!!! She went on to basically try to talk Isadora into getting one, should she need it, going on and on with a pile of absolute bu****it that I would NOT expect from someone who is tasked with ensuring that kids with chronic, life-threatening illnesses make the most out of their lives, because, just in case you weren’t aware—having a hole surgically placed in your neck to create a direct tunnel to your trachea and then being reliant on a ventilator to breathe IS actually a big, painful, and completely life-altering deal, that limits many things in life….which our entire family knows all too well…She went on to do a very similar thing to Lukas regarding the trach, as well as his feelings about many other things that he had already decided, but when pressured by her very clear agenda, he started to question it, leaving him more confused…Which left me with absolutely NO question that I didn’t feel the need for us to ever return for her palliative “care”…
So….As soon as I heard that she was on, based on prior experience, paired with the insane miscommunication about whether or not Isadora was going to end up in the PICU in the first place, I just had a feeling that this doctor would be pushing her own agenda, and I was correct. Within seconds of arriving in the ICU, I had to ask her and everyone to leave so that I could have a moment to regroup, as it felt like too much déjà vu all over again of them being ready to yank my kid's connection to breathing far too soon. Though she was fully aware of the history, she still insisted that her plan was to “look at her numbers” (as in the machine) and “take into consideration what I was saying”, which was to look at the PATIENT, but at the end of the day, she was still going to do what she felt was best—enter even more PTSD for me, which now could easily stand for “Providers That Sling Disregard.”…And being placed in the room directly next to Gianna's, I could easily gesture and say to her things like “Look—I’m not going to walk out of here with one less kid, much like I did when I was in the room next door, thanks to you guys.” One would think I wouldn’t have to fight so hard, but in a world where medical egos trump parental intuition and patients' wisdom about their own bodies, it’s a rough, relentless battle. I was grateful she left for the night after I made it very clear that no one would be removing Isadora’s breathing tube until at least the next day, when plenty of critical staff were available, in the event that they just had to stick it right back in due to them rushing things. I wanted Isadora to successfully complete the breathing trials I requested to aid in determining she was on the way to breathing on her own safely, but even then, the tube wasn’t coming out until I was certain that her brain was back online, and I could see my little girl again, and that she could communicate well enough to decide, without question, that she was ready to breathe on her own without the assistance of a ventilator.
Isadora was quite uncomfortable and restless overnight, and I was grateful that they agreed to use ketamine, which had been Gianna's drug of choice for pain relief and anxiety, and not any of the opioids that would cause potential slowing of her gut, which is already obviously nearly at a standstill. When the next day came, it seemed agreed upon that we would wait until Isadora was ready, but I still felt pressure from this doctor that took on a bit of gaslighting, as she seemed to offer me more of her attitude that can only be described as a bu****it sandwich, in which she sandwiched her faint inclusion of my personal experience between her bu****it ego around her doing whatever she felt like she should do with my baby’s respiratory function. Through tears, I begged her to take our family’s experience and Isadora's knowledge of her own body into greater consideration because at the end of the day, though I already have two dead kids, at least I have peace around their deaths, and I was not going to tolerate losing another child simply because she felt like doing things according to her numbers and not looking at the patient. I told her that I needed to see Isadora’s handwriting be legible and logical, as I had waited for with Gianna during her prolonged post-surgical intubation after bowel obstruction operations, and I was glad that Isadora had taken a page out of her sister‘s playbook, without me even suggesting it, and nearly as soon as we got into the ICU she asked for that whiteboard. Throughout the night before, her handwriting was quite impossible to read, and she attempted sign language, and I tried my best to understand her, but she was clearly still impacted quite heavily by the anesthesia. I was reassured that she was at least trying to communicate, which told me that she was going to be in the driver's seat of all of it, when the time was right…
On the day of her successful extubation, Isadora started to have moments of her handwriting being legible, like the sweet message she wrote for Michael and me in the morning, expressing her love for us, but then she would weave in and out of intelligibility and understandability, which told me that she wasn’t quite back. At one point in the day, a number of people entered the tiny room at once, which, even without strong sedatives in her system, is anxiety-provoking for my little one. Additionally, Isadora was quite agitated as her pain was increasing, and she wrote a message saying that she wanted to get that tube out or she wanted to die. Now, obviously, that was a strong indication that she was irritated with that stiff plastic tube down her throat. However, I transported myself back to my birth doula days, remembering the countless times women in the throes of labor said pretty wild things about what they wanted, including such requests as having the baby cut out of them as the head is crowning. I have learned that the best thing to do when someone is in a heightened degree of pain and stress is to diffuse the situation first to help them be able to communicate better. While the nurses, upon hearing her say she wanted the tube out, seemed ready to pull it within five minutes, I decided to do what I always did as a doula in these moments, which was to first clear the room and get all of the various forms of anxious energy out of there in order to restore a little peace and calm to the person in pain. At that point, it’s far more possible to have a solid conversation, and then to decide what to do next, be that an intervention, or to continue with some other comfort technique if it wasn’t quite time. I was able to get Isadora more composed and collected, and also insisted that they turn off the sedative medication completely, as I wanted her to be as clear-headed as possible before she made this big decision to remove her respiratory support. We were able to talk and communicate with sign language, have her write legible and reasonable messages to me, and then, and ONLY then, when I recognized that she was in a good position to make this decision, which also came from her being an enormous amount of pain that I, of course, validated, did we move forward with her self-declared readiness to extubate…
I reviewed all of their plans to be prepared to re-intubate her should that need to take place and after being confident with the multiple breathing trials that we had done, or as confident as I could be having also been witness to the scariest thing that a parent can watch in standing bedside Giacomo when he was resuscitated and Gianna when she took her final breath, both after being taken off respiratory support, we moved forward with the extubation …And it was a success! Isadora was able to get the breathing tube out, placed immediately to the hospital BiPAP mask, with additional oxygen and inhalation/exhalation support built-in along with the machine, having the ability to give her some extra breaths if needed, which she did. We continued on a pretty strong respiratory plan for the entire time that she was down in the ICU as she needed to be on the BiPAP for the remainder of that day and night, and then anytime she was a little bit drowsy and certainly with sleep in the days following, and she remains on hospital-issued BiPAP at the moment, with the idea that she’ll go back to her home machine at some point. She also remains on a care plan for frequent airway clearance treatments, and this will continue even after she’s able to go home, as we don’t need respiratory issues on top of the persistent digestive ones…
We spent another night down there, during which time the IV receiving her liquid nutrition blew, requiring her to get some shots to prevent tissue damage, plus a new IV (that big brother, Lukas, was kind enough to offer some emotional support through.) Though she could’ve easily spent an extra day in the ICU just to be on the safe side of things, I was very happy to get out of there and to not have to interact with that particular physician again, and I told Lukas and Isadora that they need to do everything possible to NEVER end up back in that place again, as it truly is one giant well of PTSD for me…But in a bit of bittersweetness, since Isadora’s room actually shared a window with Gianna’s old room, I couldn’t help but just stare at it from time to time and remember everything that had happened next door. At one point, I asked if we could go in there because, on the day Gianna died, Isadora and I hid a bunch of hummingbird stickers all throughout the room, and sure enough, we tracked two of them down that still remain. My hope had always been, since that grief-laden day back in March of 2023, that some family sitting vigil in there with a sick little one would find those stickers at one point and at least have a brief smile amongst the trauma that I am all too aware transpires in those rooms.
As for her current state, Isadora is definitely still recovering from surgery, having pain around the tube and throughout her belly, which is to be expected. We’ve also been dealing with some low blood pressure and navigating to resolve that with extra fluids and stress doses of the steroid that is part of the daily management of her adrenal insufficiency, as obviously her body has been incredibly taxed by this ordeal…We are working on slowly increasing the formula she is getting via the G-tube, and she is taking in about half of her nutritional needs, which is a great thing, and the rest remains to be administered via IV nutrition. The bad news is that she is having more of that abdominal pain returning throughout her gut, similar to what she was experiencing prior to the surgery, so we’re pausing on increasing the formula rate for the time being. My concern is that perhaps her gut was stalled out by having days with nothing put in it that allowed it to recover a little bit, and now that we are putting more back into it and it’s not moving through, that pain is starting to creep back up. We will remain in a waiting period to see if she is able to handle getting the full amount of her formula at some point, and if not, determine whether or not they will swap her G-tube for a GJ-tube, in the event that she can’t process food her stomach. If that is the case, it’s not going to be for another three or so weeks, as we need time for the first surgery to heal. We also are preparing more for the possibility of full IV nutrition, which Isadora intuitively feels is probably what’s going to happen at some point, but still, we’ve got to try everything…. Additionally, I’ve asked for some more detailed imaging in the form of a small bowel follow through study so we can look and see exactly what’s happening to food once it gets into the stomach and starts going through her digestive tract, getting x-rays along the way, as it doesn’t really matter if we can put in there if we can’t get it out…
Overall, my sweet baby has been doing alright, but Isadora is definitely quite sad and feeling the drain of this whole mess right now…I have repeatedly validated these feelings, as we’re kind of all having them—but no one, of course, to the extent that she is—reminding her that it is more than okay for her to feel that way, and that even the sun gets clouds in front of it pretty regularly, so she doesn’t always need to be a ray of light, even if that is her default personality, and she’s got more than enough reasons to feel a little down right now…
So yes, moving back up to the sixth floor, while it is far from being home, feels a hell of a lot better than being down in that PICU. I think I’ve finally got us organized and unpacked, as we are now hunkering down for what is likely to be at least another month at this point, it seems, even going so far as to personally replace the rod in the closet there to maintain some level of wardrobe structure, as much as one can living out of an overnight bag and relying on hospital laundry facilities …I’ve got her artwork back up, music therapy is in play (which she even did down in the PICU, dancing along to the music, eyes closed, heavily sedated, and with a breathing tube in— evidence that she is a true performer at her core), she is slowly being up for visitors in both human and canine varieties, and we are looking for tiny silver linings such as family time together watching Friends and Big Brother, playing Garbage, figuring out how to refill the hospital family lounge coffee maker, and brief moments of respite outside the hospital walls because without them, this Groundhog Day, hamster wheel-like experience is enough to make anyone go slightly mad…
Thank you again, and always, to those who have sent well wishes, food, love, and all forms of positivity our way—-it’s much appreciated and will be needed for quite a bit longer, it seems…💖❤️🩹💖❤️🩹💖❤️🩹
