Ari's Emergency

As I am writing this, we are nearing what I hope is the end of a very long and stressful period. Right now, I am sitting with Ari in her PICU (Pediatric Intensive Care Unit) crib as I retell her story.

Yesterday morning started out as a day like any other. For a brief moment, none of my children appeared to be ill, they were all in more-or-less happy moods, enjoying their breakfast at the table. Ari is a fruit-lover, so it struck me as odd when she didn't gobble down her apple slices. Instead, she just dazed off expressionless as the apple slices sat on her plate. I thought, 'she must be very tired', but she had gone to bed on time the night before, and I couldn't think of any reason for her to be so out of it. I felt her forehead; no fever. So I watched her. About a minute later, Ari began to subtly move her lips as if she was whispering something. Had it been my first time seeing this, it would have confused me or maybe even amused me, because it was something so subtle and odd. And Ari does little odd behaviors all the time to entertain herself and draw our attention, such as tongue clicking, fake coughing, and the like. So, like I said, if this had been my first time seeing this, I would've been perplexed, but probably not alarmed. But his was not my first time seeing this. And I was alarmed. I knew what this was, and this time, was bound and determined to let nothing go wrong.

The instant I saw Ari start to twitch her lip, I called 911. Then I slipped an emergency Klonopin (Clonazepam) wafer inside her lip, took her from her chair at the table, and swaddled her in a blanket on the couch. I called Jake, and (thanks to how he works one minute away from the house), he was home within seconds. I told Gabe that the firemen were coming to visit us and help Ari feel better, to which he responded with excitement and anticipation of their arrival. When the emergency crew got to our house, Ari had been seizing for nearly ten minutes. At this point, her seizing was not subtle but very disturbing as the entire right side of her face (eye, tongue, mouth, cheek, forehead) spasmed violently and the right side of her body became hypertonic. Ari's seizures always manifest this way, displaying what is called a Focal Seizure. The only difference was that this time, she didn't make any sounds, which I find even more frightening, because this means that should she have a seizure at night, I wouldn't even be able to hear her over the baby monitor like I did last time.

The paramedics and firefighters tried unsuccessfully to start an IV in Ari's arm to start her on a sedative and stop the seizure. By this time, she had been seizing for about ten minutes (obviously, the Klonopin wafer had no effect). People notoriously have difficulty finding Ari's veins. Time was passing, so they cut their losses and gave her a shot of Versed (Midazolam) IM in her leg. By the time her seizure finally stopped, she had been at it for close to twenty minutes. Meanwhile, the firefighters were trying to convince me to let them take her to Gilbert Mercy Hospital. I was going to dodge this bullet. They kept saying how it was closer, they would be able to settle her down sooner, etc. I knew that if she went to Gilbert, she'd be there several hours, mostly spent just waiting for them to order an ambulance to come and take her to St. Joseph's Hospital, because the care at Gilbert is *ahem* not suitable for Ariana's condition, and St. Joe's is where her doctors are. So I argued to go to Banner Desert (of the good hospitals, the closest one to us). Reluctantly, they agreed as they witnessed Ari's seizure coming to a stop. While this was going on, Gabe and Bella were being very patient and observant. They watched on, unafraid but curiously, as Ari's face was covered with an oxygen mask and a crowd of uniformed men went to work on "fixing" Ari. I rode with Ariana in the ambulance, and Jake stayed home with Gabriel and Isabella until Devyn got to the house to take over.

We were seen at Cardon Children's Medical Center Emergency Department. By this time, Ari was coherent but weak. Ari also had a right side facial droop. This was the first time we'd ever seen Ari exhibit a facial droop, and it was so discouraging. The right side of her face was nearly motionless. When she smiled, it looked like she was just trying to bear her teeth. It didn't look like a happy face, and it certainly didn't look a thing like my Ari! I asked the attending physician about the facial droop, concerned about the possibility of Ari having had another stroke, considering her blood clotting disorders, and he immediately attributed it to Todd's Paralysis. They said it should dissipate within two hours, and mostly, it did. By the time my sister, Marci, got to the hospital, it had gotten much better already. And when Jake got there, we all thought it was more-or-less gone. The doctor ordered some blood work (Phenobarb level, etc.), and had an IV placed (maintenance fluids, because Ari was NPO - a.k.a. "nothing by mouth"). It took the nurse three tries before she managed to get the blood and place an IV. Ari, of course, was in a lot of pain and aggravation as a result, on top of her nausea and vomiting from her seizure. The doctor also ordered a CT scan for Ari, saying that they'd be able to see any areas of new bleeding or new damage to the brain, all without having to sedate her (as with an MRI). I don't know why this always sounds like a great idea at first, and turns out to be a ridiculous waste of time. You'd think I'd have learned my lesson by now. Ari has never had a CT scan that wasn't followed by an MRI. But there we went again. And the CT scan (which is a five minute thing) showed no new damage or blood. Good news. So, the ER doc told us that we were free to leave, we needed to increase her Phenobarb dose to 7 ml twice a day from 6 ml twice a day. She walked out of the room to go make up the discharge papers, when we heard her paged over the loudspeaker. The on-call neurologist at St. Joe's was on the phone and needed to speak with her. Five minutes later, the doctor reappears with an air of conviction, stating that the neurologist said that given Ari's history with stroke and her blood clotting disorders, if she had any remaining neurological deficit at this time (i.e. facial droop) that she would need to be admitted to the ICU. Ari was crying for some reason, and the doctor got all flustered, insisting that Ari still had a facial droop (8 hours or so post-ictal). Even though I could no longer see it and this news was very disappointing, her panic scared me, and we had her admitted.
The new ICU at Banner Desert Cardon's Medical is a beautiful place with great facilities. We also have a great Aflac ICU insurance policy that is going to take good care of us. That said, you have just heard everything positive that will come from this entire experience.

While we know from experience that being a patient in the ICU is never a walk in the park, I guess I repressed the memory of how awful it can really be. Ari was hospitalized in the ICU, because she was on "seizure watch" and because she would get an MRI faster than someone not in the ICU, but she wasn't sick. By the time her one day in ICU was over, I couldn't honestly say the same. Ari was scheduled for her MRI at 2:30... AM. I figured that since it was already after 10 PM by the time she was admitted and worked up, that she could at least have four hours of sleep that night. After all, she had been through a lot that day, had missed her nap altogether, and was exhausted and starving. Without giving you the play-by-play, this didn't happen. Between all the monitors, IV alarms sounding, rubber-gloved nurses coming in and out to repeatedly take her temperature (rectally), flush her IV, untape and retape the IV; put antibiotics and phenobarb in the IV; Ari may have slipped into sleep somewhere around 1 AM. At 1:30 AM, we were awakened by our nurse to find out that they would take her in MRI as soon as she was sedated and had a second IV placed. "Why do we need a second one?" I wanted to know. After all, between the EMTs and the ED nurses, they'd destroyed about five veins trying to get this one. I was told that the MRI needed one IV to put in a contrast solution, and the other was for her continuous drip of sedative since the doctor wanted minimal sedative (no general anesthesia) for the MRI. I said, "Can't we just give her a bolus of sedative and then have them follow it with the contrast solution in the one IV?" Of course the answer was no. So, from 1:30 AM to oh, 3 AM, a team of four nurses (plus Marci) huddled around the crib, on which I was cradling/pinning Ari down, while they shoved needles in her every which way to Sunday. I kid you not, they must have tried six different spots, at each spot spending about ten minutes while they fished and dug around for those elusive veins. Ari, having been just woken up in this way, was literally writhing in my arms, hoarse from screaming at the top of her lungs, and drenched in sweat. Keep in mind, she was hungry and thirsty (NPO for the MRI), sleep-deprived, and in extreme pain. I remember thinking, 'this would never be allowed at Guantanamo Bay'. Also, they were all crazy addicted to this thing called the J-tip needle-free lidocaine injection, which is supposed to numb the area. I'm sorry to knock medical research, especially when it's an attempt at reducing children's' pain, but this is not a pain-free injection, and it does not work immediately, and in some kids (Ari), it just makes things worse. The air-pressure injected Lidocaine did hurt Ari, and was often followed instantly by the IV needle (without time for the numbing effects to set in). The fact that the Lidocaine is pressure injected and very cold caused Ari's already skittish veins to constrict and run away. By the time I realized this, we had already run out of our Lidocaine allowance, and we were going au natural pain-wise. Finally, the last vein (no J-tip) worked, and the second IV was in and ready. Problem was, despite finally heeding my requests to increase Ari's sedative dosage, Ari was still no where close to sedated. As I warned she would be, she was even more agitated and upset than before (common effect of torture, wouldn't you think?).

But it was time to go. So there were were in MRI at 3:30 AM, with the technician telling me that even a slight chewing motion would ruin the pictures, producing motion artifacts, and Ari was wide awake. Knowing that Ari startles at the sound of a barking dog (and when I say "startles", I mean cries hysterically; and when I say "dog", I mean even our dog), and from what I've heard about MRI's being loud, I knew that "a slight chewing motion" would be the least of our problems... so I went in the MRI tunnel with her. I lay in the narrow opening between Ari's legs in the MRI tunnel to reassure her for two hours-- an uncomfortable but necessary decision. From the first bang, Ari was in hysterics. And just when she'd begin to acclimate to that one kind of bang, they'd pause and then start a different series of bangs (different pitch, speed, & pattern), causing her to start screaming all over again. All during this time, Ari is hooked up to her sedative drip through her IV, which isn't doing a dang thing. So I asked the nurse to ask the doctor to raise the dose or else everything that we were going through would be for nothing, as the MRI images would be rendered useless. She did, the doctor did, and when the nurse was about to up the dose, she decided to check the IV first (even though it was the new one; nurses have a compulsion for "checking" IVs). As she was doing this, she untaped it to look at it, and the IV slipped out. That's right, all those hours of torture amounted to nothing! Not only did the IV slip out, but she lost it before the contrast was added for the MRI (the reason it was there in the first place). So, as Ari is screaming and her blood is getting all over her and her blanket, the nurse gives me this look like she is going to have to redo it. Before she can even open her mouth, I tell her that she just needs to give Ari a bolus of sedative and chase it with the contrast dye in the one remaining IV, and that will be that. She called the doctor, and the doctor gave her the okay. While I probably should've been feeling relief right then that someone finally heeded my advice and Ari was going to get a break as a result, I was feeling like I wanted to strangle someone for putting Ariana through all that unnecessary pain and anguish. Oh, and it worked like a charm (my advice that is; not the strangling). The bolus of Versed (which they followed with the contrast dye) put Ari straight to sleep for the rest of the MRI, yielding the only salvageable images from the entire procedure.

At 5:45 AM, we were settling back into our room. Ari, Marci, and I finally had the chance to get some rest. That is, until 6:30 AM, when the intensivist Dr. Yun (sp?), walked in. The way I remember it, I was so out of it that she was talking to me quite a bit before I realized that I was not still dreaming, and it was even longer before I realized that she was a doctor. So, already, I think we're off to a poor start. That added to the fact that I'm a little pissed at how she ran the $*&! show the night before with all of her amazing direction about the sedation and the MRI. Then the first thing that I remember hearing out of her mouth that morning was "The MRI shows that there is a stroke. We need to do a repeat MRI; this time an MRV so we can see how big the clot is. The images from the MRI were not good because of all the movement. And we'll be putting her under general anesthesia this time, so she's still to be NPO. I don't expect that she'll be discharged any time really soon, because she will need to be put on anticoagulation." Another stroke??? I had a million questions, but I only got to ask a few, like "How do you know that this thrombosis (clot) and stroke (resulting brain damage) are acute and recent and aren't preexisting? How does that manifest on the MRI images? Are you sure???". I didn't get very far in my questions before realizing that Dr. Yun was growing very defensive, like I was an incompliant patient that had no right to be challenging her, and I must have been doing so only in my haste to get home and get things back to normal. This, of course, made me upset, and quite frankly, at this point, I didn't believe that Ari had a stroke. Here Ari sat, seemingly back to her normal self, post-stroke? It didn't make sense, especially given the obvious and life-altering damage that came as a result of her prior stroke as a two week old preemie in the NICU. I asked her if the anticoagulation (i.e. Heparin therapy) would reverse the effects of the stroke or break up the existing clot, to which she said "no". I said that I've heard of people catching strokes early enough to reverse them completely, and she said "we don't make a practice of doing that with peds (kids)". Then I said, "So you're saying that she's definitely had a stroke, and there's definitely no treatment that you offer for it?". Affirmative. "And we should plan on staying here because?" I wanted to know. She snipped, "so we can prevent the clot from getting bigger." I was still kind of dazed from exhaustion, but I remember her hurrying out of the room and feeling like we didn't really understand each other.

Ari was awoken then (after no more than 45 minutes of sleep) for her morning work-up and IV meds and fluids. The alarms were sounding off for every little thing (usual hospital stuff): this med is almost gone, the med is gone, switch out the fluids, the IV is obstructed & needs to be flushed or retaped, her heart monitor lead came off & stuck on a blanket, she kicked off her pulse-ox, etc. Ari was so hungry, thirsty, and agitated that there would be no sleep for her until 10 AM when her loading dose of phenobarb (4 x's her usual dose!) knocked her right out. The nurse came to prep Ari for her MRV at 10:30 AM. My heart sunk, because (like always) Ari had just fallen asleep, but I knew that the sooner she got the MRV over with, the sooner she'd be able to eat and drink, so I jumped at the opportunity. The MRV was being ordered without contrast dye, so there was no need to place a second IV, but we did still need the first. The IV monitor had been repeatedly sounding because of an 'obstruction patient side', so the nurse tried to flush it. It wasn't flushing, and Ari was screaming. Now, the nurse decided that it was the tape that was causing the obstruction, and that if she could untape and then retape it, it would flush. Now, that tape was on there pretty good, and the peeling away of layers upon layers of tacaderm tape on swollen skin over an IV site was not the kind of thing that makes for a good morning. As she was calling for another "set of hands" (nurse) to hold Ari down while she peeled the tape away, I insisted that I do it myself. I got a damp washcloth and slowly undid the tape, while Ari watched quietly. I was starting to get sick of the "I told you so" moments. When the tape was undone, the nurse (named Loralai, who was with us all the night before and up until right before the MRV that morning) forced the flush as Ari was screaming bloody murder. She decided she was proud of herself for getting the IV to flush, even though Ari wailed every time she pushed in the stopper, and considered it "reinforced". I scoffed and told her that IV was going to infiltrate any second. We were getting pretty sick of each other, and we were definitely due for shift change.

Shift change came, and on comes Deserae (our favorite nurse). As we were wheeling Ari down to get her MRV, I asked her if we could place another IV in Ari when she was under anesthesia for the MRV, just in case this one failed on us, so we wouldn't have to poke her again when she woke up. She agreed, and the anethesiologist (who was awesome, btw) got a vein on the first try after Ari was asleep. Right after they did this, the first IV failed, and they had the second one all set to switch right over. The actual MRV procedure went really well, but the results were a whole 'nother story. This is where it gets really confusing, even for me, and I was right there.
The results took several hours longer than expected to come in, which makes sense when you hear that there were four radiologists, one intensivist (Dr. Haddad), one hematologist (Dr. Shah), one peds neurologist (Dr. Haynes), and one otolaryngologist (ENT) (Dr. Mancuso) reading the images and making their judgements. To make a long story a little less long, let me just say that each and every one of these physicians (except the ENT who had his mind made up for his part & the four radiologists who were represented by just the Director of Radiology, Al Wildman) came in at least once to say that the MRV showed that Ari does have a clot...and they also came in at least once each to say that the results show that Ari does not have a clot. There was a lot of back-and-forth, a lot of apologizing on their part ("I drove all the way back to the hospital from my house just to tell you that I'm sorry, because I feet like I mis-led you"), a lot of empathizing ("If I were you, I'd be feeling so frustrated right now"), and a lot of offering to do me favors ("Let me get those images for you right now...I'll pick it up from St. Joe's if I have to"), but no decisive conclusions. No answers. Basically, it was a lot of "experts" telling me in their fancy jargon that they know a lot of stuff, so it lends them credibility when they use their fancy jargon to tell me that they don't know... that nobody knows if Ari has a thrombosis (clot) or not. That all of the tests they ran just put us right back where we were before we ran a single one. The issue: there is a missing vein in Ari's brain. There are a couple reasons this could be. Congenitally, she may be missing that vein (like Isabella is missing a hand), the imaging could have been spliced so that the vein didn't show up, or there could be a thrombosis in the vein (which was not seen) that is blocking the vein. They do agree, however, that so far, there has not been a stroke (brain damage/lack of oxygen resulting from the possible clot). However, if there is a clot, and it grows without treatment (anticoagulation therapy), there could be a stroke later on. That goes to say that if there is a clot, anticoagulants are necessary. But our hematologist, along with all the other doctors except the radiologists, seem to think that since there is no proof positive that there is a clot (they'd be using negative induction to arrive at the conclusion that there is one), it would be too dangerous to put Ari on 6 months of anticoagulation. It is very risky anyway, but if there is a clot it would at least be a necessary evil. So, let me just go on record to say, that I suggested they get her previous MRV scan (done in early 2009) from St. Joe's to use as a baseline to compare the two. If there was no vein in the first, then whatever caused it's absence is certainly not an acute problem. If there was, then it's a different story. They agreed to do this. The old MRV was ordered and should be in and read by Tuesday. I spoke again with the Director of Radiology today on the phone and told him that Tuesday is his deadline to get a final verdict on the MRV. Right now, the recent MRV report reads that there is a thrombosis. But we are treating her in line with the belief that there is no thrombosis. I'm not okay with that. It sounds to me like someone is trying to cover their #$$. I told Al WIldman (Director of Radiology at Banner) that if Dr. Shah (hematologist) decides not to treat, I want the MRV report to reflect that and be amended to say that there is no thrombosis. If they don't amend it and they maintain that there is a clot, I want to treatment to be consistent with that as well.

The last thing we found out is that there is something going on behind Ari's left ear. They waffled on this one as well. They told us it was a mastoid and a really serious inner ear infection, which could be responsible for throwing the clot. The ENT (really good ENT too, btw) said that she did not have an ear infection and said that it was only a pocket of fluid, which is common in children, and could potentially get infected. He said it was not a serious problem and definitely not responsible for a clot (or her nausea or her facial droop, as suggested by previous doctors).

That's all for now. I'll update when we find out more. Right now, what Jake and I keep hearing ourselves say is what a blessing it turned out to be that we didn't go get Stem Cell Therapy last weekend or the weekend before, because in our naivity, we would've most certainly blamed Ari's seizure and this (maybe) clot on the therapy. What an unnecessary regret that would've been. Right now, we're still planning on going for Stem Cell Therapy on February 15, although anything could happen. If this series of events tells us anything, it's that we are only passengers on this journey