In Search of Healthy Poop

When we were first diagnosed with clostridium difficile (c. diff) last November, Cyrus's school nurse didn't want him to come to school anymore. I remember being frustrated and thinking it wasn't a big deal. He had to be on antibiotics and symptom free to come to school, and he had to have his own quarantined changing area separate from the other children. I remember feeling this was completely overboard. Now, eight months since Cyrus had his first c. diff symptoms, where we are STILL fighting this, I realize how very very wrong I was.

Because c. Diff sucks! It's incredibly contagious. Hospitals can't seem to get rid of it. Spores can live on surfaces for like five months. It's become antibiotic resistant. Hand sanitizer and most disinfectants won’t kill it either. The only thing that works for sure is heat and bleach. If you can’t get the diarrhea under control it can kill you through dehydration, or if it colonizes your colon it can kill you by causing your colon to burst. Approximately half a million people in the U.S. get it each year, and 29,000 of those people will die within a month of their diagnosis.

People are most likely to contract the bacteria when staying in a hospital or nursing home, especially if they've recently had a course of broad spectrum antibiotics because antibiotics wipe out your good bacteria in your gut, making it ripe for colonization by these c. diff spores. Having a g-tube is a risk factor for contracting c. diff as well because the invading evil bacteria doesn’t have to go through the soft tissue of your mouth and throat where your immune system is active. Instead, any of this bacteria that gets in his tube has direct access to his gut. C. diff is more likely to affect seniors over the age of 65, but there are now documented cases of it tearing its way through day cares too.

As mentioned last time, Cyrus had a second relapse of c. Difficile after his bout of pneumonia. This was attributed to his use of broad spectrum antibiotics. At that time, we were referred to a GI specialist at UCSF for exploring the idea of a fecal transplant. A fecal transplant is where they take the poop from a healthy person and insert it into your system. The idea is it will reset your gut biome by introducing it to all the good bacteria that should be there. It has been shown to be remarkably effective in treating a bunch of different gut issues and infections, including c. Diff. There is less research on the ideal gut biome for pediatric patients though, so they usually wait until your third relapse before they recommend the procedure.

In March, we met with that GI specialist and made a plan. She ordered the fecal transplant procedure so that it could be prior authorized in advance, but we waited to schedule it. In the meantime, he was put on another long-term course of vancomycin (we call it vanco), a narrow band antibiotic that targets c. diff. And we were told that if he ever had to take a broad-spectrum antibiotic he should take vanco at the same time.

He made it through that course, and lasted an additional nine days before his symptoms reemerged on a Friday evening no less. (Fridays are annoying because you can’t talk to doctors as easily). We made the executive decision to put him back on vanco because we still had refills left and letting it run unchecked is awful! And his symptoms cleared up by Sunday. I called the following Monday to schedule the procedure anyway because while these long vanco courses seem to keep things at bay, they are clearly not getting rid of the underlying infection completely. Then I messaged the GI doctor for further instructions.

She wanted us to take another lab test to confirm that his diarrhea was caused by c. difficile. (So annoying!!) She said we could try to test while Cyrus was still on vanco, but that if it came back negative, we should take him off, let symptoms reemerge and test again. All before our scheduled procedure, which is less than two weeks away at the time of these instructions!

I can't explain how panicked this approach made me. I don't want him to go through an unnecessary unpleasant procedure (it’s the same as a colonoscopy). But letting c. diff go unchecked scares the crap out of me! Blood in the stool is considered a severe symptom, and is a sign your colon isn't doing well. The first time Cyrus had blood in his diaper (December), I did research on this disease. That's when I learned that this can kill you. That once blood shows up it could be just a few days away from doing just that. Cyrus has gotten to that point twice now.

Not to mention that I have a three-month-old baby in the household as well and this stuff is so contagious! I already have separate changing areas and mats for both of them. I do their laundry separately. I’m constantly wiping counters and bins (and cell phones) down with bleach. Like I don’t want her to get this either, and letting him get to the point where he has symptoms puts her at risk too!

So, I really don't want to let this go unchecked, but I know from prior testing that if he's on vancomycin, the test will be negative. So, against my maternal instincts we took him off vanco, and I became an anxious mess. He can't tell me how much his tummy hurts or doesn't. I was smelling all his diapers (a particularly putrid strong smelling odor is a telling sign of c. diff apparently), obsessed with whether or not the smell is the same or worse than the day before.

Four days in, he had a stool that was so liquid we couldn't collect a sample because his diaper absorbed it all. That's got to be c. diff, right? But the next day, he has a blowout and it's definitely looser than normal, but not quite to what I would call diarrhea. It definitely is pungent though. We can at least collect a sample. He was also very cranky and lethargic all morning. (Does that mean his stomach hurts?!) I don't like it. But since we got a sample, we can put him back on vancomycin.

Which worked wonders! The next day he was happy, active, and his stool was more solid. And I was feeling loads better.

Only the freaking test comes out negative! (He had a positive test in March). I swear life is gas lighting me because now I'm doing nothing but questioning my perception of reality. Like his symptoms abating with the introduction of vancomycin, and coming back with its absence suggest that c. diff IS the culprit. Maybe I just collected a sample too soon? Or maybe he has something totally new that also responds to vancomycin? (Please, no!) Or am I being hysterical and seeing what I expect to see? (See! Gaslit! It sucks when you feel like you can't trust yourself).

Anyway, the GI doctor said we should proceed with the colonoscopy anyway to see what else could be going on that might explain his symptoms. She said that if it looks like there's damage caused by c. diff we could do the transplant at that time anyway.

Now I'm wondering (panicking) if I keep him on vancomycin and it is effective in suppressing the c. diff, will his colon look like it has c. diff even if it does. Should I take him off and let it run rampant just so that if he still has c. diff. his colon will look bad enough to warrant the transplant? Will he get a colonoscopy now, not get the transplant, and have symptoms reemerge later and need the transplant anyway? Like, I don't want him to have to do this twice if we could just do it once! It requires general anesthesia and a colon cleanse the day before, which many older people in my life tell me is not fun.

I'm just spiraling. And I hate c. diff more than ever. And the crazy thing is that this could kill him if I just let it go and it's not an infection that is even related to his disorder! Though apparently, he most likely picked it up at one of his various doctor's appointments, so maybe if he didn't have this disorder, he never would have been exposed to it, but that's not the point!

Anyway, I sent all my spiraling questions and concerns to the GI doctor after her latest set of directions. And her response was "We can do the transplant. No worries! ;)"

I feel so so so relieved. But also, why couldn't you just say that last time, so I didn't have to spend the last two days spiraling in anxiety! Or better yet, why require the lab test at all (apparently, I've been told by a certain beloved Infectious Disease Doctor that many doctors put too much trust in the lab test, and that the interaction with vancomycin is more indicative of a c. diff infection) when our original plan was to schedule a fecal transplant as soon as diarrhea showed up a third time?!

Anyway, I'm fine now. (Let’s pretend anyway). And Cyrus will hopefully be fine soon.

EDIT: I wrote this over the course of the last two days, and was just editing for posting today. And while I was editing, the GI doctor sent us a message basically trying to scare us into backing out of the procedure (apparently, someone died recently from a fecal transplant because they contracted e. coli from the donated fecal matter). I just wish that if she felt that this was the wrong decision, she would just say that and explain why, rather than trying to manipulate us into the decision she wants us to make. (New Edit: apparently, it's less likely she's trying to manipulate me, and more likely that she's freaked out herself because the FDA issued a warning about this the day before - story now linked). If she insists on a positive test and wants to postpone it until we can confirm that it is in fact c. diff, I’m open to that too! I just don’t want him to get a colonoscopy and NOT get the transplant. So, I’m back to spiraling. Yay…

...

General update:

Cyrus started the ketogenic diet six weeks ago. This normally requires a hospitalization, but they made a special plan for us to implement it slowly after struggles with pneumonia and having a new baby at home who doesn't need to spend ANY extra time in a hospital even as a visitor. So we’ve been introducing the diet slowly, and just three days ago made it to the full 4:1 ratio of fat vs protein and carbs.

Every time we’ve gone up on the ratio, Cyrus has reflux, irritable moods, and takes really long naps. After about three or four days most of those symptoms seem to abate. And the best news though is that his seizures have dropped from 2-3 per day, to 2 per every six days! He’s been so much more aware when he is awake (and has happy bouts in between the irritation) and I think him not having seizures everyday just allows him to be more present! It’s awesome.

In conclusion, the keto diet is definitely rough on his system (no constipation though! Maybe c. diff is helping with that…), but appears to be helping him neurologically a lot. We are cautiously optimistic, and are going to stay on the diet for 12 weeks and then reassess. (Some of Cyrus’s seizure treatments in the past have had a bit of a honeymoon period, only for the therapeutic benefits to wear off after 4-6 weeks).

Eliana is fourteen weeks old. I can say that as of three weeks ago she doesn’t have c. diff (yes, I had her tested after mucus started showing up in her stools). She's just broken 11 lbs and is capable of sleeping just over six hours in a row, but she thinks five is fine most nights. She's been busy experimenting with tactile sensation and textures and strange vowel sounds that mommy can't emulate. She's mastered the call and response part of conversation. She grabs everything and tries to put them in her mouth, though she's been mostly unsuccessful as her own hand gets in her way.

She enjoys watching her brother roll around all over the place and likes to sit with daddy while he's watching anime. She's decided that bottles aren't THAT bad if you let her take them on her side and baths are actually kind've fun... maybe. But mommy leaving for almost five hours to go to a graduation is absolutely unacceptable! Last week, she's figured out she can get out of tummy time by rolling to her back. And just yesterday, she started laughing!!

Bringing the Hospital Home

The day Eliana and I were discharged from the hospital, we were also pushing (via phone and text mostly) for Cyrus to be discharged from his hospitalization as well. The team’s original goal for discharge for Cyrus had been for him to make it 24 hours on room air without any oxygen desaturation events. This proved to be especially difficult, because it turns out that Cyrus often desats during and after a seizure. This was probably occurring before the pneumonia, but we didn’t have any way of knowing so none of us really could determine what Cyrus’s baseline even was. It could be that even Cyrus’s baseline would not meet that criteria. In any case, it was clear that our criteria for discharge needed to change, but the pulmonologists on the team disagreed on what the new criteria should be. 

One of the doctors wanted to get him as stable as possible, needing almost no breathing support at home. They argued that with a newborn at home and with me recovering from surgery, that they weren’t confident that we could meet Cyrus’s needs at home, and that if we couldn’t during this critical recovery period, it could result in a regression or relapse of the pneumonia.

The other pulmonologist wanted to get Cyrus out of the hospital as quickly as possible, now that he was stable again even if he was not completely better to reduce the chance of him getting (more) secondary infections while in the hospital. This pulmonologist also seemed to think that us being able to take Cyrus home would actually be less stressful for us, even with a newborn at home. I was inclined to agree, but when you miss rounds, you don’t have as much ability to sway care decisions (or you have to wait 24 hours for your input to get shared to the with the whole team). 

They ended up compromising. Cyrus ended up staying one more day to insure he was remaining stable, and then we were told that they would be sending the hospital home with us in the form of a bunch of respiratory equipment so we could administer his breathing treatments ourselves. The lead pulmonologist told us that Cyrus is at high risk for respiratory issues and that it was a good idea for us to have access to this equipment in general, but that it was easier to justify to insurance companies while he was ill.

Cyrus was so excited to be home! He relished in being on the floor and able to move around freely. Bringing him home before he had completely recovered definitely felt like the right call. Though when we put him in his shake vest and strapped him into his wheelchair for that first breathing treatment, he looked so betrayed. But alas, he needed the breathing support.

A breathing treatment for Cyrus involves him spending 20 minutes in a shake vest, while simultaneously breathing in albuterol with a nebulizer, and then going through 15 repetitions of cough assist. All of this punctuated by suctioning as needed. 

The shake vest is basically just a blow-up vest hooked up to a vacuum that pumps air in and out, to make his chest vibrate. The idea is to loosen up all the fluid in his lungs, so it is easier to suction up or cough out. The albuterol is called a bronchodilator, and it basically causes the tissue in his lungs to open (dilate) more so that it can absorb more oxygen. The cough assist is the most traumatic of them all in my opinion, as it involves sealing a mask over the mouth and nose, forcing air into his lungs, and then pulling it back out hard enough that it makes him stick out his tongue involuntarily. But all of it in combination, helps to get the gunk out, or close enough to out that you can suction it out.

We were also given a pulse oximeter (measures oxygen levels in your bloodstream) so we can better assess when a breathing treatment is needed, and an oxygen concentrator, which just pulls oxygen from the air and creates a more concentrated version of it, so we can give oxygen to him when he needs it (without having canisters delivered regularly to our door). 

So, we are adding amateur respiratory therapist to our list of ever-developing medical skills. 

We started with three breathing treatments a day, which was rough for Cyrus because it meant an extra two hours in the wheel chair a day doing an activity that he absolutely did not enjoy. But man, any moment that he is on the floor, he has been thrilled! It’s like being stuck in the hospital, and to a lesser extent trapped in the chair, makes him appreciate the time where he is free so very much! 

Each week, we’ve weaned him down by another treatment. And last week he was supposed to be off completely, but by day three he sounded congested and was super low energy again, so we hooked him up to the pulse oximeter, and he was dropping down to 89/90 every few minutes (being like 95 inbetween). And honestly, I don’t think this is lingering pneumonia. Because I’ve seen him get like this before. I feel like occasionally he just aspirates too much and slows down for a few days. Or it could be seizures causing desat events as well as was happening in the hospital. I just didn’t have the ability to check his O2 levels and we didn’t have anything to do to help him when he got like this.

So, now it’s cool that we can check and that there’s something to be done about it on bad days as we now have a mini hospital in our closet. It’s not cool that he clearly has some respiratory issues in general that seem to stick and hover around. But I guess it’s a good thing that we’re learning to recognize desats (like he gets really pale – you almost don’t need the O2 monitor) in addition to seizures so we are more equipped to take care of him than ever!

General Update: 

As mentioned, Cyrus has been in a great mood since coming home from the hospital three weeks ago. And this behavior has lingered, which has been delightful to be around. His seizures have been unpredictable and inconsistent. He’s had days here and there with no seizures, which honestly is the first time in months. But inbetween, he’ll have five seizures or two or three pretty significant ones that last 2-3 minutes (and completely wipe him out). 

This week, Cyrus suffered a relapse of C. difficile. This bacteria’s resurgence was likely caused by the broad-spectrum antibiotics used to treat his pneumonia. Basically, the antibiotics wiped out most of his gut bacteria, making it easier for the C. difficile (antibiotic resistant) to take over once again. Repeated episodes of blood in his stool caused a bit of panic on my part and I reached out to his pediatrician, the complex care clinic, and the GI clinic all at once for guidance. Eventually everyone responded with slightly conflicting medication schedules an advice. Haha! Now, we get to attempt to sort through that. If this medication does not have lasting effects, we may be exploring the possibility of a fecal transplant. I swear, it’s never a dull moment! (I would love some dull moments!) 

And Eliana is doing her job of eating, sleeping, and putting on weight. She’s definitely pretty loud when she wants something, and I feel has desensitized me a bit to Cyrus’s fussing, because his complaining is so mild compared to hers. In the last few days she’s become far more expressive where she just makes the cutest faces! She also seems to have learned the routine. For example, I always change her diaper before eating. So now, she stays calm during the diaper change if she’s hungry because she knows what’s coming next! 

Kyle has made it back to work, and I have continued to gain back my mobility and independence, though going out by myself still feels like a monumental task. I can do it though. Since I have weight lifting restrictions, Kyle has been mostly taking care of Cyrus, and I have mostly been taking care of Elli. But we’re making strides in spending time all together in the same room rather than being exiled in separate ends of the apartment. 

Cyrus seems very interested in Eliana. He coos at her when she cries, reaches for her when she’s on the ground with him, and one day last week he became noticeably upset when she left him (to go eat because the child is voracious!) on the floor by himself. In turn, when she’s on the floor she’s always watching him. It’s cool to witness.

Baggage of a Special Needs Mom with a New Baby

As I imagine most first time parents are, when Cyrus was first born I was a nervous wreck. I remember being discharged from the hospital with a four-day-old baby and just getting slammed with the horrifying thought that I was completely responsible for this helpless child. 

I remember being so anxious much of the time. I’m certain that sleep deprivation and crashing hormones contributed. I had nightmares of discovering him not breathing, I would start awake and rush to his bassinet or crib, and mostly succeeded only in ruining his or my husband’s sleep.

The first time I was driving with him in the car, I saw all the other cars on the road as potential assassins! I constantly evaluated how I would maneuver the vehicle in the event of a collision to minimize the impact to the rear and side of my car to protect my infant son. 

I worried that he wasn’t eating enough, and then when he started spitting up constantly, that I was feeding him too much in my anxiety that he might not be getting enough.

Eventually, as the days passed without major incident (and the hormones leveled out), and the intense anxiety gradually lifted, I learned to integrate the motherhood roll into my being and function as a regular person again.

Now with Eliana, I have found that my post partem fears have taken a different form. Her movement is often jerky and random, often with her hands floating out in strange patterns in front of her face. And it looks so familiar – it looks exactly like how Cyrus moves his hands and arms randomly at times. And I have to remind myself, no, your daughter doesn’t have chorea. Your son has chorea, which makes him move like an infant. Your infant daughter is supposed to move that way. It will fade as her basal ganglia develops.

And if you move her too quickly, both her arms will extend outward dramatically all at once. And without thinking, my mind instantly jumps to infantile spasms! No, your daughter is not having the infantile spasm seizures. This motion is called a startle reflex. It happened because you startled her. And it’s rather adorable. So calm down. 

Her lower lip starts to tremble or quiver at times. That’s not a seizure is it? And it really doesn’t look like one, and if anyone would be able to recognize a seizure, it’s me right? Like I’ve learned to identify any and all of them (except absence seizures. Those are tricky!) because Cyrus has had all of them at one time or another. But it’s like I simply can’t help going there!

I have been asked a few times if she’s healthy, both before she was born and since. I’m not sure if this is a common question – I don’t remember being asked this when I was pregnant with Cyrus – or if it’s a reaction to the fact that they know I have a son with special needs. I always hedge in answering the question. I tell them that she doesn’t have ADSL and that she has no chromosomal abnormalities. I can never bring myself to say, “yes, she is healthy” because I don't know and I can't promise that.

But I still look for reassurances myself. She’s ten days old and already has better head control than Cyrus. She is loud and is incredibly quick to communicate her displeasure and needs, whereas Cyrus has always been remarkably (maybe impossibly) calm and chill. These are signs that she is developing normally and is healthy. 

But I also know better than most what it’s like to be the one in a million with the disorder, and that there are absolutely no guarantees. I want to say that she is healthy. By all standard observations and standards, she is! But I can’t truly know. 

I can only love her.

General Update: 

Eliana and myself made it home exactly a week ago on Friday. She is currently ten days old. She is really good at eating – she brought in my mild supply so fast and started putting on weight even before we left the hospital, which we were told was uncommon. She is also good at sleeping, sometimes giving mom a whole four hours in a row of respite. I think the plentiful milk supply may have something to do with that. She initially hated being burped (it interrupts her feeding!), but has since learned to trust that the process actually makes her feel better. Diaper changes are the absolute end of the world apparently. I especially enjoy watching her right after she has eaten and stays awake because her eyes are open and actively taking in everything around her. She seems positively riveted. And the awe in her face is just amazing to watch. 

Cyrus came home from the hospital the day after we did. His pneumonia has mostly cleared as far as we can tell, though we’re still doing breathing treatments at home. He has returned to all normal activities, including attending school, and he has been in the best of moods overall. I think being trapped in a hospital bed when he was starting to feel better made him restless and angry. When he gets floor time now, he is smiles and giggles most of the time! He apparently is also a great sleeper and has amazingly not been disturbed at all by his sister’s night time meltdowns. His seizures have been kind’ve all over the place without a pattern where one day he’ll have none and the next he’ll have five pretty significant events. I hope it will settle soon.

Mom and dad are both sleep deprived, but it feels like we’ve turned a major corner. Kyle says that “Today? I am human again.” And I personally feel less like I was hit by a truck, and more like I just ran a marathon. I have gained a lot of my mobility back, and most of my pain is in my breasts from too much nursing and less in my surgery incision, which is starting to just feel sore. We have felt remarkably supported by family and friends who came to keep Cyrus company in the hospital, or afterwards to take care of me or help with the children in these first few days of recovery.

We know we’re on a rollercoaster as we settle into our new routines. But it’s a rollercoaster that we are excited to be on. 

When You Can't Be There...

Cyrus was hospitalized for the very first time when he was two weeks old. He had a case of infant mastitis – which was bizarre but not really life threatening. He was only hospitalized because he need to get antibiotics through an IV because he was too young to take them orally. 

He probably spent three total days in the nursery with all the premies, where he looked huge in comparison. We called him the King of the Babies! During this time, I did not leave his side. It didn’t matter that I was exhausted and still recovering from a c-section surgery. And honestly, I don’t know if he needed me to be there, but I needed to be there.

There were so many tiny babies that had no one with them. And that just made me sad. I didn’t know their stories. I didn’t know if they had been there for a day or three months. I didn’t know if their families had to work, were taking care of a twin, were physically incapable of being there, or simply needed an emotional break. But I remember being grateful that I could be there. That he didn’t have to sit in the hospital alone. 

And when he was hospitalized again at four months, and then again, at six months, it was the same. I was always there! And more experiences in the hospital emphasized that this was a good thing in my mind. Because nurses are in and out because they are taking care of more than one patient. They aren’t going to catch every seizure, they don’t notice a change in behavior that indicates something, and if you’re not there you don’t get to participate (as effectively) when care decisions are made. Like if you miss the moment when the team does rounds, you won’t get to participate in making the care plan. And it may take you hours for the resident to come back and tell you want the plan even is (though nurses usually know what is going on, they don’t always).

But when Cyrus went it for surgery last July, I was exhausted. I knew at that point that I was pregnant. I had my own doctor’s appointments to go to while he was admitted. And I also knew that hanging out at a hospital meant I was more likely to get sick, which was more dangerous for me, and for my soon to be daughter, in my physical condition.

I simply couldn’t be there are often as I wanted to be, and I let myself go home to my own bed to sleep. (Probably a good decision). I have to say it is an absolute luxury to be able to walk away and know that the nurse caring for your son knows how to handle g-tubes and seizures, and has a whole friggin’ team at their back if something should go even slightly awry. 

I remember arriving though one morning around ten, and Cyrus’s was completely alone in his cage like crib, and the television was on playing the movie, Cars, loudly with the speaker at his head. His arms were thrashing around in agitation, while he “yelled” out his displeasure, and his leads were pulling at him in every direction. 

And it was just so sad. I had no idea how long he had been this upset, or if anyone could have recognized him as upset in the first place (his upset is pretty mild compared to most children). And I know that I told the night nurse the day before that he was nonverbal and cognitively more like an infant, but I have no idea if that message got passed along to the day nurse with all the medical things that need to be shared in a limited amount of time. They may not have realized that the movie blaring into his ear would definitelynot hold his attention, and could from a sensory perspective, irritate him immensely. 

I held no ill will towards the nurse. I just felt so bad for not being there sooner. Because hanging out in a hospital room by yourself sucks. Especially, when the people who do occasionally visit you, don’t know you or your preferences at all. 

Cold on Monday

Cyrus caught a cold last Monday. And Monday night things got worse with high fever and rapid breathing. But by Tuesday morning he seemed to be doing way better. We took him to the pediatrician anyway. His O2 levels were a little low and he was definitely congested, but his lungs were clear and his fever had broken. We were sent home with standard “drink plenty of fluids and watch for these things.”

But over the next two days, he really didn’t seem to get any better. He slept a lot, and would wake up only around 4 or 5 pm after sleeping all night and all day. During that time, he did seem active and engaged – irritated and fussy. Just enough, that I would assume he might be getting better, but then the next day would be the same.

On Thursday, we took him back to the pediatrician. He was looking pale and his O2 levels had fallen down to 84. (Generally, you want them to be like 97+, and when you’re sick and congested going down to 92 is considered acceptable. 84 is low). She gave him an albuterol breathing treatment that initially seemed to help, but once the treatment was over, his levels fell right back down.

So off to the ER we went! He was put on oxygen and got more breathing treatments. His levels came up again, but as soon as the support was removed he would crash. So, they admitted him. And Cyrus is in the hospital once again. 

Pediatrician on Thursday

He showed remarkable improvement over the first two days, but then on Saturday suffered a setback as he appears to have developed a secondary infection and his cold has now turned into pneumonia, and was elevated to ICU care. He has since improved again, but it looks like he’s going to remain in the hospital for much of this week.

And as of Tuesday, I will no longer be able to visit him at all.

And though the reasons for that are exciting – we all finally get to meet Cyrus’s sister! – it still kills me. It has been incredibly hard for me to accept. Especially because some of these breathing treatments seem rather traumatic for him. (The cough assist is no joke! It forces air in and gives him puffed up cheeks, and then pulls it back out so hard it makes his tongue stick out).

I am very aware that it’s only been Cyrus for the last four years, and that now we will have to readjust and find a new balance with our growing family. And if we’re being thrown into the deep end in having to figure that out, well, it certainly isn’t the first time.

I am also aware that I am not the only person in Cyrus’s life that cares about him. And I am so grateful that both friends and family have volunteered to come visit Cyrus while I am unable to do so. And that my husband will be able to split his presence to some extent.

Perhaps, it is the vanity of a mother to think that no one can be there for him as well as she can. And perhaps, this is an exercise in learning to let go, to trust others because I need to find a better balance. I need be better at building in actual respite in my life to keep doing all this. 

But when you can’t be there… it still emotionally sucks! 

ER on Thursday

Dinosaur Nebulizer. Be jealous of how cool I am!

Feeling a bit better!

And Being Cute

General Update:

You read the post! Cyrus has pneumonia and is in the hospital. But is much improved and is currently stable. He’s been very sleepy today, but has also had short periods of alert wakefulness. He’s even smiled and laughed a few times. Seizures have been way lower during this week (probably because he’s sleeping so much), but you have to appreciate those small wins.

Sleep time! 

The cat has been on insulin for almost two weeks and she is doing way better as well. Her blood sugar levels have cut in half, and she’s been so much more active! She was even playful yesterday evening. I haven’t seen this behavior from her in months! I guess I thought she was just getting old, but apparently, she was just an untreated diabetic.

Our home is like 95% prepared for a new infant. Cribs, diaper bags, and carseats have been prepared. Floor space has been created. And the fact that all of this happened with everything going on is a small miracle (I blame c. difficile). Thanks c. difficile. I still don’t like you! 

And I’m headed to the hospital on Tuesday for a planned C-section. Will likely be there for the following four days, but will hopefully be able to post a birth announcement soon! It may be awhile before all four of us can be together though for a full family picture. But it will definitely happen! 

Cool vibrating vest thing. He seems to like this one.  Not a fan of the  nebulizer and HATES the cough assist.

The other upside to illness is that when he's finally feeling better, he just loves everything! 

Let The Storm Rage On

If I had written this post ten days ago, I would have called it the Eye of the Storm. June through December felt like one long never ending test of endurance, which I refer to as The Storm. Like as soon as we had one challenge behind us, and thought just maybe we could breathe for awhile, something else would fall out of the sky. It got to the point where it was almost funny – in a hysterical kind’ve way.

On several occasions during this time, several of my friends in various aspects of my life asked what exactly was going on, not to challenge me, but rather to better understand my struggle. But I would just freeze. Like I didn’t actually know the answer to the question. I was so primed to deal with just the day, I could barely remember what was going on yesterday, let alone a week ago. Perhaps I was so traumatized that I blocked it out, though I’m sure there’s something about memory issues while being pregnant as well. (At least, I haven’t had time to be anxious about the pregnancy).

But the first six weeks of 2019 have been a true respite. Cyrus’s seizures seemed to settle, his gut infection (C. difficile) seems to have finally cleared up after a relapse and a nine-week course of antibiotics. We got that van which has made both traveling and day to day transport far easier! And even at work, I was implementing a project where all the planning was front loaded and all the grading done live in class, so I had almost no homework for the six weeks!

But when you’re about to have a baby, you know it’s going to get crazy again – that you’re not actually out of the storm, that you’re still going to get caught up in the rest of it. And that’s why I was calling it the “Eye of the Storm”. I also embraced this period, riding it out and appreciated every single second of it, knowing that come early March all our routines would have to be reestablished and figured out. But apparently, we didn’t have until early March. It seems that we exited that seeming calm period a bit earlier than anticipated starting with a jarring phone call.

The classroom phone mostly irritates me when it rings. It’s usually something really quick and easy to take care of, but it often disrupts my flow when I’m in the middle of an explanation or helping a student. It’s also not something you can ignore. We’re about a third of the way through an 85-minute block period, and the phone rings. 

My classroom phone also has caller ID on it – it tells you which room on campus is calling, though there are so many rooms and I don’t really know where everyone is, so it’s not always helpful in identifying who’s calling. But I noticed immediately that this call was an external number, which is weird. 

A split second later, I realize it’s my husband’s cell. 

My heart stops.

He never calls me on the classroom phone. Before I pick up I already know this is not good news, that we are in trouble. He tells me that Cyrus is having an active status seizure at school, that he’s already been seizing for twenty minutes, hasn’t completely stopped yet even with two doses of emergency meds, and that the school has called for an ambulance. He is in San Jose at work, and nowhere nearby. He asks me what I think we should do. 

I have no idea. I am frozen. I’m fighting back tears, and there’s a restless class of thirty teenagers behind me getting more squirrelly by the second.

On reflection, my panic somewhat surprises me. Like if there’s one thing I should be used to by now it’s seizures. But you see, Cyrus hasn’t had a seizure like this since he was six months old and was barely medicated at the time. And what I know of his disorder’s progression is that these types of events may become more and more common until they completely take over. It felt like a sign that this trend (which admittedly can take years to build up) is beginning. And I don’t want to face that reality. 

“Kari? Are you still there?” 

I asked him to give me ten to fifteen minutes to figure out what I was going to do and I would call him back. And what did I do after hanging up? 

I finished my lesson. 

Because what else do I ever do except carry on?

But about twenty minutes in, I am wondering what the hell I am doing. I needed to figure out how to leave, I needed to call my husband back. I needed to head to the hospital. But I just kept going. It wasn’t that the lesson was more important in that moment, but more like I was still completely panicking and teaching a lesson is something that I can apparently do on autopilot, without thinking at all. And I was in shock or something.

Then at the end of the activity, I was able to stop myself and didn’t start the last arc of the lesson. I told the class I had just been called with a family emergency, and that I needed to figure out how to leave. I did break down a bit, and started crying, at which point three kids ran up to give me a hug. Because they are the sweetest. And spent the last fifteen minutes of the block arranging for coverage for the rest of the day. 

I arrived at the hospital before Cyrus as he had longer to travel than myself. And I anxiously waited in the pediatric waiting room. When he was finally wheeled in with his hair plastered up against his scalp with what I assume was sweat, looking totally out of it, my anxiety vanished. He was awake, definitely disoriented, but not actively seizing and definitely aware. Once I could see that, I was fine. Totally fine. Though not excited to spend the afternoon in the Emergency Room.

It only took him a few hours to turn back into his usual active, vocal, and happy self. Which is honestly a faster recovery than some of his shorter two minute seizures. I imagine the emergency meds helped a lot with his fast recovery. We were sent home feeling emotionally exhausted, but feeling confident that all was as well as it ever is. 

Friday, I kept my cell in my pocket, knowing that seizures tend to show up in clusters. But Cyrus had a good day at school where they spoiled him with extra attention for his fourth birthday. And I was able to finish my last day of work, say good-bye to my students, before heading out on maternity leave for the rest of the semester.

But upon arrival at home, one of our cats whom we knew wasn’t doing well, took a sudden and drastic turn for the worst and had to be put to sleep. This was especially really hard on my husband, as she’s been with him for almost twenty years! So, he was really down, and I felt so helpless to support him feeling so drained and stressed myself. I could only offer a hand to hold so to speak.

And after a weekend of guests whose presence was healing, we took the other cat to the vet due to some other concerning symptoms and behaviors that we’ve been noticing for the last month or so, but had honestly been neglecting in favor of the cat that we knew was dying. We learned she has diabetes and needs insulin injections twice a day every day, potentially for the rest of her life. And for whatever reason, it was this event that broke me. Where I felt like everything was collapsing in on me, and I felt completely inadequate to meet the needs of everyone around me.

This was the moment where I felt like I couldn’t carry on.

But of course, this moment is fleeting. And the next morning, we’re doing exactly that - carrying on. 

Tuesday morning involved taking Cyrus to the lab for some bloodwork for his neurologist, then making a stop at Target to pick up insulin for the cat from the pharmacy. My husband had also asked me to pick up something for dinner a few other things that we needed.

This ended up being slightly more challenging than I had really anticipated, as I have a child with a wheelchair and my shopping list consists of more than a few items that are just going to be too heavy for me to carry in a hand basket. So, here I am pushing a full-on shopping cart in front of me with my left arm, and pulling Cyrus backwards in his wheelchair with my right arm, while clearly eight and a half months pregnant (other configurations were attempted, but did not work). It was slow going – especially around corners, but we made our way through the store. I keep seeing (and getting in the way of) the same three or four women. One of them finally pulls up right next to me and pats my shoulder. 

“You’re managing really well,” she says. “I’m impressed.” 

And I laugh. But it’s got that hysterical edge to it. Like really, I should be crying, but I can’t because I’m so past that point. It’s all just deliriously funny. Because if it’s not funny, I’m just going to collapse into a puddle on the floor.

I told her thank you, but I’m not sure she really understood how much her words meant to me. Because to me, it wasn’t about managing to get through the store. It was about everything! It was about the neverending storm that always seems to be whirling around me.

This coming week isn’t going to be any less busy. Cyrus has four doctor appointments (February is when everything pops up because it’s his birthday month), I have one, and the cat has another. But hopefully, it’ll just be busy… and not packed with the emotional barrage we’ve gone through in the last week. I’m crossing my fingers anyway.

In the meantime, this baby girl has nine days left before she is going to be evicted! I’m beyond excited to meet her! Hopefully that emotional barrage will only be the good kind!

And in the meantime, let the storm rage on.

The cold never bothered me anyway…?

(Who am I kidding?! I get cold SO easily! But I will carry on!) 

General Update: 

Cyrus’s chronic diarrhea last October and November was apparently not caused by issues with his formula, but by a bacterial gut infection, known as C. difficile. He was diagnosed with this infection the day after Thanksgiving. He took a round of antibiotics for ten days, and his symptoms totally cleared up, only to surge back into being three days later with a vengeance. After the relapse, Cyrus was placed on a nine-week course of antibiotics (which was terrible, because apparently many antibiotics lower your seizure threshold! So, we were seeing 5-6 seizures a day on the worst days), and it was suggested that we clean everything in our apartment while Cyrus was on the antibiotics (and not actively shedding spores) because C. diff spores can survive on surfaces for up to five months!

And you know how that bottle of disinfectant under your sink says it kills 99.9% of bacteria? Apparently, C. Diff is in that 0.1% of bacteria that it doesn’t kill! So, we were directed to use hospital grade bleach! And we decided to steam our carpets for good measure too. So, we had an intense week of purging (to get access to every corner of the floor) and cleaning. The silver lining here though is that having to do this, made our apartment so much more ready for the welcoming of Eliana into our home. In terms of physical space, we are more ready now than we ever were for Cyrus before he was born. 

In addition to cleaning and reorganizing, we’re building in accessibility everywhere that we can. Cyrus graduated from his crib, which he is gifting to his new sister, into an actual full size twin bed. We got a Scandinavian Day Bed that has wood paneling on three sides, and then added a toddler gate onto the fourth. He moved into his own room in late November and has been sleeping better ever since! We also splurged a bit and got the trundle that goes with it, so that if Cyrus is having a bad night, one of us can just sleep in his room. 

Our van also came through finally! And let me tell you, it is life changing! It makes taking Cyrus anywhere for anything SO much easier! And far more pleasant for both him and us with way less lifting and transferring. And as much as he’s not a fan of sitting in his wheelchair, he seemed to hate the car seat more. So, this is awesome!










A week after we got the van, his new wheelchair finally showed up. And again, he hates sitting, but his posture and position looks SO GOOD in it. It’s clear that the old adaptive stroller has been too small for him for months! This is definitely an improvement!

And Cyrus got a haircut a few weeks back. And he looks like a totally different person. One friend said he looked more like a boy and less like a heavenly cherub. Haha! He’s grown increasingly vocal and social both, and this has been nice to see again.

Cyrus appears to have recovered from his status event well. We went up on a med, and I’m finally seeing more side effects than I care for that makes me uncertain if it’s worth it. But it mostly seems to affect him just in the hour after he takes the meds. It just seems to totally knock him out – where he is still awake, but kind of just stares into space for the last hour before bed, so we may not be able to go up on it anymore without affecting his personality. But luckily during the morning and afternoon he perks up and is more engaged with life! He’s having about 2-3 seizures a day since the event. And we’re meeting with his neurologist and a dietician on Monday to talk about trying out the ketogenic diet, which does involve changing his formula again… Wish us luck!