Reality, Disconnected…

Going Through The Motions

26-Aug-2015

Early morning shoppers wandered past me as I slowly ate breakfast and sat preparing to commit my thoughts and the events of the past few days to my journal. I was confused about how I felt.

On the one hand, I was relieved that everything had turned out Ok. I also felt that I’d done well in the hospital, that I’d been strong, and present for Kai while he’d suffered.

But, on the other hand, I knew that the events of the past few days had affected me deeply. It had been very traumatic and I’d expended a lot of energy, dug deep into my internal reserves to keep myself on my feet, and very nearly fallen apart in the process.

Everyone around me seemed confident that they knew what they were doing. Sure, not everyone looked happy and healthy, but they all looked purposeful and capable; the young man behind the counter at the deli who’d served me breakfast had remembered my usual order, and me; the security guard in his neon vest, walkie-talkie held up to his ear was alert and smiling as he wandered the shopping center; a group of elderly people had been dropped off by minibus, obviously from a old-age home nearby, and they made their way slowly through the mall, some sticking together in groups, others walking off by themselves; an old man with a small paunch and scoliosis shuffled unhurriedly past; a young, overweight gothic girl walked past, clearly self conscious but determined to carry off her alternative look; an architect and his partner poured over plans of the shopping center upgrade, discussing dozens of issues.

My world didn’t feel quite as real as theirs. I felt disconnected from them, from the world around me; I could feel it under my feet, on my butt where I sat on the chair; I could hear its loud bustle all around me; I could see all its different shapes and sizes around me, all its myriad colors and textured surfaces, walls, floors and ceilings; I could understand the flow and the intention of the people around me. But it didn’t feel important to me. I had only come up for breakfast because I’d had to drop Brad’s car off for him around the corner and I knew that my body needed sustenance. I hadn’t eaten anything substantial since Saturday night, over 4 days ago.

Kai Gets Admitted To Hospital

22-Aug-2015 (4 days previously)

Kai woke up the Saturday with a slight cough. I gave him a bit of Prospan cough syrup and he was active all day, bouncing around after Zee and Ryder whenever the opportunity presented itself. It was a pretty normal Saturday. The weather was great again, and I regretted that I’d returned the rental car the Friday evening before. I would have taken the boys to Green Point Park again.

By Saturday evening Kai’s cough had developed into an unusually short, sharp barking cough. Other than that though he still looked all right when I put him to bed around 18:00PM. He fell asleep as the shadows in the bedroom lengthened, and the gray light, filtering in from behind the closed curtains, turned black. But, he didn’t rest for long. He started to cough in his sleep, loudly, and sharply. It woke him every time he coughed and I would have to soothe and settle him each time. During the late hours of the night, he started to wheeze. I gave him 15mg of Prednisone syrup and a Pulmicort nebulizer and for a little while that seemed to make it a bit easier for him to breathe. During the early hours of Sunday morning, he developed pyrexia, his temperature spiked to 39C, and I administered some Nurofen syrup to him. I didn’t sleep much that night at all, sitting there listening to his breathing, or fetching him more milk, or medicating him if his symptoms indicated it.

By Sunday morning he hadn’t improved at all. He’d started to develop biphasic stridor, and he was really laboring to breathe, using all his accessory muscles to assist in the physical act of getting air in and out of his lungs. I could see subcostal, intercostal and sternal recession as he struggled to breath. After Miki had seen to Zee and Ryder’s breakfasts she came into the room.

“He’s not getting any better. I think it’s Croup. I’m worried about him,” I told her. I was worried: I didn’t think he could maintain that breathing effort through another day and night.

She just looked at me, and said, “So, take him to the hospital now. Why haven’t you left already?”

I considered this briefly. “Yeah, I’ll go now. Help me get his bag ready, please, and something comfortable for me to wear, it might be a long day.”

Fifteen minutes later, Kai and I were in an Elite Taxi, snaking our way to the base of Table Mountain, and the Cape Town Mediclinic ER. There was no traffic on the road. I was surprised to have found a taxi so easily and quickly. They drive past our apartment throughout the night on weekends, literally hundreds, ferrying tourists and the more responsible local drinkers around. But, I didn’t think Sunday morning was such a profitable shift.

Kai presented at the Cape Town Mediclinic on Sunday morning with a tachycardia of 177 beats/min., tachypnea of 58 breaths/min. apyrexia, biphasic stridor, bilateral, upper and lower airway wheezes, subcostal, intercostal, and sternal recession. The triage nurse next to the front desk took one brief look at him, and immediately buzzed us into the ER itself. We were soon sitting in the pediatric ward: a single-bed ward specifically for treating the younger patients. Pale cream walls were covered with bright yellow, green and purple stencils: a young girl dancing around a tree, while butterflies flew over her head, covered one wall, while an orange tree grew up the other wall, doubling us a tool for measuring height.

I helped the nurse attach the ECG and SpO2 monitors to Kai. Sp02 was low, but not dangerously so, heart rate and breath rates were both above normal, way over the standard ranges.

The Doctor came in shortly, and I gave her my handover. She listened while examining him, asking a few questions here and there. She wanted to know what medications I’d already given him, and I told her what he’d had during the night.

She agreed with my preliminary diagnosis of Croup, an upper airway obstruction, and she instructed the attending Sister to administer 15mg oral prednisone and to put Kai on an adrenaline neb. It was indicated for stridor. It’s also one of those drugs that I just cannot get and should only be used in conjunction with careful ECG and SpO2 monitoring.

The stridor responded to the adrenaline neb, which Kai fought for a minute or two and then settled as the cool, funny tasting mist tickled his nostrils. But it didn’t do anything to alleviate Kai’s tight chest, wheezing or to reduce the effort required for him to breath.

“I would like to admit him for overnight observation,” she said after evaluating him again.

“He’s not on medical aid, Doctor.” I replied.

“Ok. I’ll write you a referral letter for Red Cross Children’s Hospital. You all right with that?” She asked me concernedly.

“Sure,” I replied. “Great facility. I’m just not sure how I’m going to get there; I don’t have a rental vehicle this weekend.”

She looked at me, unspoken questions carefully hidden behind her professional manner.

“And the waiting could be an issue. On the ambulance we just wheel our patients directly into medical or trauma, past all the people waiting outside. In fact, I always recommend to people that if they need to get into hospital quickly they should call an ambulance; that way they bypass the waiting area and get triaged immediately.”

“Metro ambulances take forever to get here, and the ER24 ambulance will cost you about R2500.” Her response was spot on.

I shook my head, thinking to myself: not if we were on shift. “He’s stable, he doesn’t need ALS transport and it would be ridiculous to pay that much for BLS transport. Thanks, we’ll take a taxi. I’ll keep him safe.”

She seemed satisfied with that answer and went off to complete the discharge forms. I called Elite Taxis and booked a pick-up from Cape Town Mediclinic ER.

I quickly texted Miki to give her an update on Kai’s progress and lamented about my lack of personal transport. Getting to the hospital would be easy but being stuck at the hospital without transport would be a problem. Invariably, I’d have to pick Miki up to come through, or go out quickly to buy something to each, or to pick up something for Kai. I’d always felt bad for those patients – and their escorts – who we’d driven kilometers to the receiving hospital, knowing only too well that they had no means of getting home.

My phone rang two minutes later; it was Brad. I was surprised; I hadn’t considered phoning him. I thumbed the Accept icon and greeted him. “Hi Brad, how are you?”

“We’re up the West Cost, having a great time. But Miki tells me Kai’s very sick and you’re having a car problem.”

“Yeah, I returned the rental on Friday night, didn’t think I was going to need it this weekend.”

“Well, we’re up the West Coast so can’t help you directly, but the RunX is at my place. If you can get there, you’re welcome to use it. You could catch a taxi there and pick it up, or I could get one of my staff to give you a lift. But please don’t take them directly to my house; I don’t want anyone knowing where I live.” I could hear his girls running around him, screaming, as he made his offer.

“That would work for me,” I replied. “I’ll catch a taxi to Sea Point and then go to Red Cross Children’s Hospital from there. Much better having a car than being stranded at a hospital. What’s the name of the lady at your place?”

“Jessica, and she’ll be expecting you.”

“Thanks dude, great help.”

The Doctor had phoned Red Cross and cleared the referral with the Medical Registrar on duty that day. She handed me the discharge letter, I thanked her and then headed out to reception to pay the bill. The taxi was ready when the commercials had been conducted.

“Good morning Sir,” I said to the taxi driver as I opened the rear door and piled my bags, blankets and Kai in to the back seat. “Change of plan: we’re not going from here to Red Cross, we’re going to Sea Point to collect a car.” As I buckled Kai in the seat next to me, I gave the driver directions: “Upper Buitengracht, Strand Street, High Level Road into Sea Point, all the way down to St Johns Road. Right at the traffic lights, it’s half-way down the road.”

It was still Sunday morning so the traffic through town and out to Sea Point was light; we made good time.

“Hi Jessica. It’s Brett, Brad’s friend, I’m here to pick up the RunX.” I spoke into the gate intercom, announcing myself.

She let me in but before I strapped Kai into the baby seat in the back of the RunX, I picked up some Adrenaline from Brad’s ALS drug bag – just in case.

I called Miki on speakerphone from the car. “Hi sweetie. I’m driving past the apartment on the way to Red Cross; will you pack an overnight bag for Kai, please? I’ll be there in less than ten minutes.”

“How’s Kai?” Her voice was strained, tearful as she spoke to me over the phone.

“He’s fine,” I tried to reassure her, “but he needs to be admitted for overnight observation. He’ll be Ok, sweetie.”

She was downstairs when I arrived outside the apartment building a few minutes later; big, black bag over her back, baby blanket slung under her arm and my jacket gripped in one hand. I pulled over to the curb and opened the door from the inside.

“His Road To Health book and Red Cross card are in the front. There are some clothes for him in the back. I’ve made two bottles for him and packed his formula inside. Don’t let them feed him that milk-based crap there. Here’s your jacket in case it gets cold. Oh, and I put your phone charger in the front of the bag. Charge your phone so that I can get hold of you. Please look after my baby.” She piled everything into the front, passenger seat and closed the door. She looked strained, but rational; she was coping well.

“Thanks sweetie. I love you. Everything will be fine,” I spoke through the open window as I slowly pulled out into traffic.

Ten minutes later I pulled into Red Cross. The security guard just waved me through when I told him I was going to Casualty. I parked as close to the entrance as possible, collected Kai’s bag, took Kai out of the car seat, covered him in his blanket and walked into Casualty. I announced myself to the security guard inside and showed him my referral letter. He directed me through the doors into the medical section and I sat down to wait my turn.

Big wooden benches, worn pale with age lined the corridor. I’d wheeled hundreds of children down these corridors over the years, past these same benches, bewildered parents and crying children all staring at me. Their faces flashed through my mind as I sat there on the bench, cradling Kai. Fortunately, it was still before 11:00 on Sunday morning so there were very few patients around, only half a dozen that I could count, and they were all in the process of being treated. We only waited five minutes before going into the triage room. The Sisters on duty were thorough, took Kai’s vitals quickly, and triaged him Amber. I went back outside to wait for Kai to be seen by a doctor.

Dr. P announced herself to me shortly and invited us into her consulting room. I gave her Kai’s history as she examined him. At the same time, I pulled out my iPhone, started the stopwatch and counted his labored breaths.

“54 breaths per minute,” I said to the Doctor after counting for a full sixty seconds.

“Are you a doctor,” she asked?

“No, I volunteered as a paramedic for ten years.”

“Oh,” she said, “I thought you must have had some medical training as soon as you started counting his breaths. Nobody else would do that. And your terminology is accurate.”

“Well, I don’t have too much experience with the chronic care of Croup. Our protocol is focused on acute, emergency care of the airway, Croup being one of the possible pathologies, and maintaining an airway while transporting to the nearest appropriate facility. But I’m not familiar with the long term treatment of it.”

“I’ve classified him as a Grade 2 Croup, currently of unknown cause, and I’m going to recommend that we give him the rest of his daily dose of Prednisone, that would be…” She looked down to consult her notes.

“2mg/kg/day. He’s 13kg, so that would be a maximum of 26mg in a 24-hour period. He’s already had 15mg, so he can have another 10mg.” I finished for her.

“ Yes,” she said, “and then we should continue with Adrenaline nebs.” She pulled out her protocol notes, and pointed to the relevant paragraph: Grade 2, continuous Adrenaline nebs indicated, it stated. “But first I want to send him for chest X-rays. It’s just around the corner.”

We walked around the corner to the Radiology department, and the Doctor gave her instructions to the attending Radiologist. That’s the one benefit of visiting a large, state hospital: most departments, especially those associated with emergency management are staffed 24/7. At Mediclinic, we would’ve had to wait for them to contact the on-call Radiologist before Kai could get x-rays. That usually took anywhere from 30 – 45 minutes. Here, it was simply a matter of walking around the corner, and five minutes later a frontal, and a lateral x-ray had been taken and loaded onto the hospital network. X-rays are always difficult for kids, and Kai’s were no exception that morning. We had to undress him, and then hold him still with his hands extended above his head while the Radiologist lined up and exposed the X-Ray. Kai screamed and cried through it, but as soon as it was finished, I cuddled and comforted him and he quieted down.

Back in Doctor P’s office, we examined his chest x-rays. They looked clear. The only noticeable issue on the lateral x-ray was some hyperinflation of the lungs. This indicated that air was getting trapped in Kai’s lungs, which matched our clinical observations of his tight, labored, forced expirations.

She sent us across to the acute care unit for his nebulization and medications. His stridor decreased with his second Adrenaline neb, but he was still audibly wheezing on inspiration and expiration. The acute care attending physician indicated that it was possible that he also had a lower airway obstruction, or bronchiolitis. She wanted to cover all bases so she added Ampicillin, delivered via IV, to the medications. They asked me stand outside while they established IV access. I thought of explaining to the new doctor that I had medical training but I knew exactly what they were going to do, and I didn’t feel the need to assert my parental rights at the time.

We also inserted nasal cannula into his nostrils and administered O2 at a very low rate. Kai did not enjoy his second Adrenaline neb at all, and I had to hold it on his face as he screamed and struggled his way through it.

We spent hours in the acute care ward waiting for a bed to open upstairs and, eventually, around 15:00PM we were taken upstairs on a gurney by a porter, and admitted to Ward 3, in Ward B2, a medical ward. It was a four-bed ward and all three other beds were occupied. The nurses spent a while getting Kai setup and settled. I watched them trying to force an O2 regulator into a Normal Air outlet, with – expectedly – zero success. They finally located the O2 outlet slightly further along the overhead equipment channel and – successfully this time – attached his nasal line to it. A SpO2 probe was taped onto his toe, and connected to the monitor on the bedside.

Kai refused to sit, or lie on the bed by himself, so I settled into the hard chair next to the bed with Kai clinging to my chest. I could feel every torturous breath he took.

The nurses came on their late afternoon rounds, administering medications, formula feeds, and offering solid foods. Kai took his Panado, but wasn’t interested in any solid food. I informed the nurses that I had my own Soy based formula, as Kai was allergic to cow’s milk. Unlike two years previously where they’d refused to let me use my own formula, they were quite happy to let me take care of the formula.

The afternoon dragged on, slowly turning into evening. The TV was turned on and tuned to the Sunday afternoon omnibus of Sevende Laan, a popular, local soap opera – just what I needed: two and a half hours of Gita, Paula, and the Hillside High gang. But the other mothers were watching and as much as I wanted to turn it off, I didn’t. The chair I was sitting on became more and more painful, my neck started to hurt and my back started to spasm from keeping Kai supported and comfortable. I hadn’t eaten since the night before, and had only had the occasional gulp of tap water during the course of the day. I was starting to feel light-headed and hypoglycemic, and I could feel a splitting headache coming on. I put Kai down on his bed, and pulled up the safety rails. He started to cry, but I needed to get out, and get something to eat and drink before it was too late. I informed one of the Sisters on duty that I was just running across the road, and that Kai would be alone for a few minutes. They said they would look after him.

I ran across the road to Woolworths and bought some ready-made sandwiches, two drinking yoghurts and some Tab. I figured that would be enough to get me through the night. I got back to find Kai sitting upright on his bed, mouth hanging open, spittle drooling down his chest, and large, startled, round eyes staring out of a slightly downcast head. He cried out and reached for me as soon as I walked back into his line of sight.

I forced down some drinking yoghurt and took some painkillers. I couldn’t stomach the thought of a sandwich though. My stomach had knotted up, I was feeling nauseous and my lower intestines were feeling loose.

It turned dark outside and I thought I heard thunder rumble outside. I checked through the windows and saw that a light mist had rolled in. Clouds hung low in the sky and thunder rumbled in the distance.

At 20:00PM Sunday evening, I administered another Adrenaline neb for Kai. He settled into it quite quickly this time. The Doctors had noted in his file that he should get these nebs every four hours. It was going to be a long night.

At 22:00PM he was fast asleep on my chest. I took the chance to put him down on his bed, figuring he was fast asleep not to notice. Small wonders, he just crawled into his Winnie the Pooh blanket and slept on. I pulled out the fold-down parent bed next to his bed and lay down. Obviously, I couldn’t sleep but I hoped that at least I could relax enough to settle my nerves and work out the worst of my body aches.

The ward lights went out, and the other mothers in the ward went to sleep, their babies lying relatively comfortably in their own beds. At 22:30PM, Kai woke up in a panic, screaming, clawing at his face, ripping out his nasal cannula and giving himself a nosebleed in the process. I picked him up, held him to my chest and gently soothed him. He quickly tucked his legs and hands into the warmth of my chest and dozed. He was comfortable but I was back on the chair.

At around 24:00PM one of the night Sisters came through for a set of observations. Kai moaned and groaned a bit but let her take his temperature.

“Daddy, lie down, put him on your chest. Do you have anything to sleep under?” She asked.

I shook my head – we hadn’t thought of bring a pillow of blanket for me. But, I was happy to lie down with Kai on my chest. They hadn’t allowed that previously as some of the mothers slept too soundly and let their babies fall on the floor. Obviously, they’d subsequently decided that the benefits of kangaroo care outweighed the dangers.

The Sister kindly brought me through a pillow and a Government Issue blanket. I lay down on the creaking foldout bed with Kai on my chest. I tried to cover him with the blanket but he grew agitated, kicking it off, dislodging the SpO2 probe in the process. The monitor started to alarm stridently. I got up, shut the alarm off, reattached the SpO2 probe and settled Kai again.

I didn’t sleep but at least I was moderately more comfortable, and Kai was quiet. At 02:00AM Monday morning, the Sister came through with Kai’s Adrenaline neb. He’d meant to get it two hours previously but they were busy. Kai was audibly wheezing and even though I absolutely didn’t want to put him through that ordeal, or myself, I knew he needed it so I sat up on the chair – again – and prepped him for the neb. He cried once or twice as it started but he was too exhausted to put up a real fight.

“Where did that blood come from?” The Sister looked concerned as she noticed the dried blood around his nose and lips.

“He ripped his nasal cannula out a couple of hours ago. He must have scratched his nostrils when he did it,” I replied. “But, he’s maintaining an average SpO2 level of 95% on room air (RA) so I figure there’s no need to make an issue of putting it back in.” I knew infants and toddlers: the more time they spent on O2 the more dependent they became on it, and the harder it was to get them off it. I was actually quite pleased he’d weaned himself off the O2 so quickly and successfully.

The Sister nodded in agreement and I assured her I would monitor his SpO2 levels carefully. After his neb, I settled back on the bed and carefully arranged Kai on my chest. I pulled his Winnie the Pooh blanket over both of us, and he seemed comfortable enough with that. I didn’t sleep. I just lay there listening to him wheeze, and feeling his deep, labored breathing pushing against my chest.

Minor Personal Breakdown

24-Aug-2015

Just after I had Kai settled again, I had a panic attack. I lay there, my stomach knotted but feeling like I was going to void my bowls any minute, while an icy-cold sensation washed down the length of my body. I was terrified. I held onto Kai and went through some very basic breathing and meditative techniques, trying to identify but separate myself from the physical and emotional reactions coursing uncontrolled through my body. I had a little success – my panic subsided somewhat but I was still feeling very anxious.

The ward lights came on at 05:00AM, and I gave Kai another Adrenaline neb at 06:00AM. The other ward mothers bustled in and out, fetching buckets of warm water, clean sheets, and set about washing their babies and changing the linen on their beds. They clearly knew what to do and where to get everything.

One of the nursing staff came in and spoke to me. “Daddy, are you going to bath your baby. Do you know how?”

I smiled at her. I’d been awake for almost 48 hours now, it was difficult to smile, but I’d always found that a smile accomplished far more than a bad attitude or a stern disposition. “Yeah, I know how. Show me where everything is and I’ll get right on it.” I was quite happy to be up and about anyway. My diurnal rhythm would kick in shortly and give me some energy.

I put Kai – awake now – back on his bed, pulled up the safety rails and followed the Sister out to collect everything I needed. Half an hour later, Kai was bathed and his linen was changed. The clothes Miki had packed were too smart for treating him – they would’ve just got in the way – so I opted to dress him in a vest and a small pair of baby, hospital scrubs. The baby scrubs were actually quite cute.

At 07:00AM the Sisters did their handover rounds; the outgoing night staff updating the incoming staff on the status of all the little patients. I’d already folded my bed back up and neatened up the area around Kai’s bed. I settled back onto the chair, Kai in my lap gently sucking on a fresh bottle.

“Hi, I’m Keli.” A young woman in her mid-twenties walked into the room at around 09:00AM and announced herself to me. “I’m a final-year medical student and I’ll be attending to Kai as part of the pediatrics team here.”

“Hi, I’m Brett, Kai’s father,” I replied.

I repeated Kai’s history for her, including how he fared during the night. She examined him, filling in her clinical notes as she did so.

“His chest is still tight, and he’s still wheezing.” She summarized her findings for me. We talked some more: I asked her about her studies, her home country, Botswana, her upcoming two-years internship; I volunteered some information about Kai and our family. I doubt she really wanted to hear it but I was just keeping my spirits up and passing the time before Miki arrived to take over from me for a few hours. The plan was that as soon as Anthea, our char, arrived at the apartment, she would look after Zee and Ryder and give Miki the opportunity to catch a taxi out to the hospital and take over from me. I would then go home, shower, shave, sleep for a few hours, pick up some necessary items and then come back in for the evening and night shifts.

I was barely holding myself together, sleep deprivation messing with my memory and my decision-making skills. Knowing that Miki was on the way and that soon I could let go for a few hours was the only thing keeping me on my feet. I knew Monday was a bad day for Anthea and that I could only expect her to be in after 10:00AM, but by 11:00AM, I was beginning to worry that I hadn’t heard from Miki that she was on her way.

Plans Trashed

22-Aug-2015 (4 days previously)

I received a text message from Miki just after 11:00AM saying that Andrea was at Hanover Park Day Clinic with her baby who had just experienced febrile seizures. Miki didn’t know if Andrea would be in.

My world came crashing down around me. I had no idea what to do. I had to get home, and I had to go past the pharmacy. My nausea and diarrhea had developed during the night – I had to pick something up for them.

Miki was panicking; she didn’t know what to do, either. She was ready to call Carmen to come in to look after the kids while she came through to the hospital, but I absolutely refused – there was no way I was letting Carmen back into our apartment to look after our kids. I quickly made the decision to shoot back to the apartment, and instructed Miki to wait there for me. Perhaps when I got there, I could send her through for a few hours and then relieve her a little later in the evening.

Having made up my mind, I grabbed my bag, popped past the Sister’s station in the center of the ward and let the Sister manning the chair know. It was one of the Sister’s who I’d reintroduced myself to from two years previously, and she was more than happy to help; a pleasant disposition does go a long way.

I was out of the ward, just after 11:15AM Monday morning, striding out to the car, pushing myself. I could barely walk up straight, my eyes were unfocused and crossing regularly, and I still felt sick to the stomach, but I needed do this. The sleep deprivation was wreaking havoc with my mental state, and I was struggling to manage my body. I drew deeply on my internal reserves, flooding my body with noradrenaline and cortisol. I entered into the full-blow modern equivalent of ‘fight’ mode. Out on the roads, the cars just weren’t driving fast enough and I kept getting caught at red lights – everyone was moving too slowly for me.

I had to stop off at Gardens Shopping Center before going home. I ran into Clicks, picked up some Adco-Cyclizine for my nausea, Adco-Loperamide for my diarrhea, baby bath wash, and some protein bars for me. I couldn’t stomach real food but perhaps I could keep something light but nutritious down. The queue out of Clicks took too long; the lifts took too long; getting out of the parking took too long; everything was taking too long. When I pulled around the corner downstairs outside our apartment, it looked like all the parking bays were taking, including the bays outside the Truworths head office.

Cape Town has become too popular. When I’d dropped off the rental car the previous Friday at 17:30PM, every main intersection through Cape Town was gridlocked. Clearly it was fast becoming the desired city to live, work and play in.

But, unbelievably there was a parking spot directly outside the apartment: my Kung Fu was working for me. I ran across the road and scrambled upstairs, briefly greeted the kids, but told them not to touch my clothes, and that no, sorry, I could not give them hugs and kisses, explaining to them that I was covered in germs and that if they touched me I might make them ill. Ryder was crestfallen.

I started loading up the bag with more comfortable clothes for Kai, some baby soap, a face cloth and a small towel for him. I grabbed a second baby blanket off the shelf and was ready to leave within five minutes.

Andrea had eventually made it into the apartment. Her parents were looking after her child at Hanover Park Day Hospital and she’d come through to help Miki. Miki was subsequently dressed and ready to go through to Red Cross. I took one look at her holding tightly onto the clothing shelf in the bedroom, sobbing quietly but hysterically and decided there was absolutely no way she was going through.

“Sweetie, you look great, and I’m really happy that you’re dressed and that you want to go and look after Kai, but I don’t think you’re in any condition to get into a taxi or a bus and make your way all the way out to Rondebosh by yourself. Anything could happen: you could switch to any one of the young Alters, and end up anywhere. It was different when you were coming to me, because you had a destination and a safe place that you were aiming for. Now, with me here, you’re just shooting off, out into the wild. We have no idea where you’re going to end up and in what condition.”

She nodded in agreement, her face red from the strain of holding onto the shelf, snot and tears coursing down her face.

“I’m a terrible mother. I can’t even be there for my son. I want to be there for him, but I don’t know what to do. I’m scared.”

“Stay here. Look after Zee and Ryder. Make sure they’re safe and happy.”

She nodded and I went into the bathroom to brush my teeth and at least spray myself with some deodorant – there wasn’t time for a full shower.

Miki wondered into the bathroom while I was in front of the basin. “Why do you look so manic?” She asked?

“I am. I’m running on noradrenaline. It’s the only way I could get out of the hospital and do what I needed to do. I am completely manic. I feel like I’m riding a giant wave. Only problem is that I know I’m going to crash sometime. I can only maintain this effort for so long. I hope it’s going to be long enough.” I hadn’t glanded the drug consciously, or at least I didn’t think so. I’d just needed it badly enough, and it had subconsciously flooded my system. The interesting thing was that I was aware of it. I could feel it coursing through my system, giving me the energy I needed, making everything crystal clear and dazzling bright. I’d been worried that I wouldn’t be able to drive home, but on the contrary, I’d flown effortlessly through the cars around me.

Miki tried once more to get me to let her go to the hospital, but she was still in tears, terrified, determined, but not at all clear-headed. I reminded her to stay at home, stay safe and look after the kids.

Within twenty minutes I was back in the car, climbing up Roeland Street for the ride back out to Red Cross. I didn’t enjoy the beautiful, green view of Table Mountain on my right, or the wide-open expanse of Table Bay on my left; my eyes were fixed on the road in front of me.

Receptive

22-Aug-2015 (4 days previously)

I wasn’t gone more than 2 hours but in that time the Sisters had given Kai another Adrenaline neb and I’d missed the Doctors’ rounds so I didn’t know what they thought his status was, or what plan of treatment they’d agreed on. Apparently, he’d sat on the chair all by himself, with the nebulizer mask strapped to his face, quiet as a church mouse. He’d even asked for a little juice, but only one person in the room had understood him. As soon as I’d stashed away his new clothing and blankets, I went looking for the Doctors. I found Keli outside one of the other wards.

“My apologies for missing the rounds, I had to go check on my other kids and my wife.” I explained briefly to her. “Can you give me an update,” I whispered to her, not wanting to interrupt the rounds.

“I’ll get a Doctor back to your room to explain everything to you when we’re finished,” she reassured me.

“Thanks. I really appreciate that.”

I walked back into Kai’s ward, picked him up, cradled him to my chest and sat back down on the chair. I wasn’t worried about the afternoon anymore. I’d seen to the family, checked on Miki, picked up some essentials; all I needed to do now was sit back and tend to Kai.

When I was seated, I sent a quick text to Simona, explaining the situation, that Miki was struggling to maintain an emotional equilibrium at home, and that if she could find a few minutes to give Miki a call and just check in on her, I thought that would help her tremendously. I texted Yoav as well, something I’d never done before during a crisis. I briefly explained the situation, and that I was in a full mania state, driving myself forward, and that quite frankly, I wasn’t sure how this was going to work out.

After the two texts, I dropped the ‘fight’ mode, tried to dump the Adrenaline and resigned myself to a long, slow, uncomfortable afternoon, evening and night. I tried to put myself in a fully receptive state and just let everything unfold in its own time and manner.

Kai was assigned the southeast bed. Diagonally across from us, in the northwest bed was Siyabonga, a young African baby, just over a year old. He’d been abandoned at birth or shortly thereafter and been taken in as a ward by Nazareth House in Vredehoek. The Mother Superior had been in to see to him on Sunday evening, feeding him, but other than that he’d had no visitors. I got the impression he was used to that because he was quite happy to sit or lie by himself in the bed.

Next to me, in the northeast corner was Zariya, a young Coloured baby, just over a year old. According to her mother, who was a very rough sounding girl, they’d been in Red Cross for twenty-one days, and prior to that, for a full month. The baby had respiratory and GIT issues. The mother was too loud and crass for me.

Across the aisle in the southwest bed was Bilal. He was one of a twin, born just five or six months previously to a teenage girl addicted to Tik. The grandmother of the baby was caring for him in hospital because the mother had run away again. They’d put her through rehab but she’d relapsed days after coming out. Bilal was the smallest of the twins, having been born at only 900g. His brother, only 200g bigger at birth had hogged all the nutrients in utero and was a healthy baby. The grandmother was a very soft-spoken, Muslim lady and I spoke with her at length.

Apparently Kai had also taken solid food at lunchtime. Not much, but enough for me to feel optimistic about his recovery. That was another reason I hadn’t wanted them to insert a nasogastric tube two years ago: you couldn’t judge a babies’ sense of hunger if you were just filling his tummy up every four hours.

I settled in for the afternoon, speaking at length with the Muslim grandmother across the aisle from me. She had been running an Educare Centre for the past twenty years out in Mitchells Plein, and she had a lot of very interesting things to say about the community and life on the Cape Flats.

The afternoon dragged on and Kai fell asleep in my arms again. I napped in the chair, supporting my head with the hand that wasn’t holding Kai. Around 16:00PM, Kai gently woke, so I placed him on his bed, pulled up the safety rails, had a toilet break and went looking for Keli.

I found her by the Sisters’ station filling in more paperwork. “Hi Keli, sorry to bother you but I haven’t seen any Doctors yet.” I gently reminded her of her promise to get someone to come and see me.

“Really, “she exclaimed, genuinely surprised, “I asked them during rounds to drop back around to you and explain what the treatment plan was.”

“I’m sure they’re really busy, but if they could manage five minutes with me, I would appreciate it.” I smiled.

“Of course, I’ll remind them.” I believed her.

I went back into Kai’s ward, and looked over the Doctors’ notes and instructions. They’d stopped the IV antibiotic; it wasn’t making any difference, indicating that the pathogen was probably viral in nature. It looked like they’d also stopped the four hourly Adrenaline nebs, but it was still listed on his headboard. They’d replaced his four hourly Salbutamol nebs with Asthavent puffs, administered via spacer. I didn’t have much faith in that though, but I’d administer it and see what the effect was.

A tall, senior, female doctor walked into the ward around 18:00PM, and sat down next to Kai and myself.

“Hi, I’m Doctor H. I’m one of the senior doctors on the pediatrics team.” She greeted me politely and professionally.

“Please understand that even though Keli is working directly with you and Kai, she is consulting with me, and I in turn am consulting with my superiors. We’re all part of a team that is seeing to Kai.”

I nodded for her to continue.

She went into a long technical explanation of the pathophysiology of Kai’s condition; it’s complexities and the difficulties of proving any one specific diagnosis at such a young age. I did my usual trick of finishing her sentences for her, moving the conversation along quickly when I understood what she was saying and where she was going. I hoped I wasn’t being annoying. I find I do that a lot in conversations – my mind races ahead and ends up working faster than anyone can talk.

A lot of it was new to me though, and very interesting. In summary, at Kai’s age, his body was still developing at such a rapid pace that it was impossible to say for certain what the long-term classification of his condition was, and therefore the only treatment they could provide was symptomatic support.

I summarized for her what I’d seen: “We’ve done the O2 therapy, we’ve done the Corticosteroids, we’re doing the Adrenaline nebs. We added IV antibiotics just in case it was bacterial in nature, but that doesn’t appear to be the case. We’re using Beta2 Agonists to assist with the bronchodilation. We’ve pretty much run through the whole protocol. Correct?”

She nodded.

“Thanks. That was a very detailed consult. I really appreciate you taking the time and effort to explain it to me. But, it does raise further questions as to exactly how to treat it when it reoccurs.”

“It’s complicated,” she agreed with me, “let’s see how the night goes. The Doctor on call tonight will check up on you.”

“Thanks, have a good evening.” I bade her goodnight as she got up and left the room. My receptive attitude had paid off in the form of an in-depth, lengthy, detailed medical discussion, something no other medical professional had yet offered me.

At 19:00PM, dinner was server: spaghetti and mince. Kai excitedly had about a dozen mouthfuls and then he settled on my chest with his bottle. No sister came through to administer an Adrenaline neb, but they’d left all the ingredients on the counter next to Kai’s bed, so I drew up 1ml of Adrenaline from an ampoule, combined it with 3ml of normal Saline and gave him the neb myself. I also administered the Asthavent puffs. His chest loosened up a bit, and I pulled out my foldout bed and settled Kai and myself down for the night. By 22:20 he was fast asleep, breathing slowly and easily, his SpO2 level at 100% on Room Air, and his heart rate an easy 133 beats per min.

The Doctor on night call came through to check up on him. She was happy with what she heard but she indicated that I should continue with Adrenaline nebs and the Asthavent puffs if I felt it necessary.

At 23:30PM, I woke him briefly for his Asthavent puffs then settle him again. His heart rate settled even more, and his breathing felt much softer against my chest as he went back to sleep. I spent the remainder of the night administering Adrenaline nebs and Asthavent puffs whenever he started to wheeze. He had an additional three courses before the morning came around.

The rest of the ward slept past the 05:00AM lights switch on. None of them needed any medication so the nurses didn’t bother waking them or their mothers. I just lay there and let Kai sleep on.

AT 06:45AM, the Sisters came through and woke all the other sleeping mothers, not particularly politely. We all set about washing and weighing our babies, and changing our linen again.

I couldn’t hear any audible wheezing from Kai – unlike the last 3 days – and when I put him down on his cot, he immediately pulled himself upright against the safety bars.

“I want out,” he said quite clearly for a two year old.

I smiled, pleased that he was feeling better. Keli came back in after 08:00AM to do her observations.

“Good morning Keli. I’d like you to meet the real Kai.” I smiled and pointed at the baby bouncing on Kai’s bed.

She looked shocked. I took him out of the bed and held him so she could listen to his chest.

“95% clear, just a very faint wheeze right at the end of his expiration,” she said, smiling.

I nodded. I’d been listening with my ear on his chest as he slept.

She started filling in her clinical notes for the day, a smile on her face. “That’s why I come through every day; to see a baby get better.”

Going Home

23-Aug-2015

Dr. H walked into the room around 09:00AM, checking everyone’s charts. She was also thrilled to see Kai up and bouncing around. “Looks like Kai’s going home today,” she said to me, clearly pleased. She instructed Keli to prepare the discharge notes, and a clear plan for home management and treatment.

A few minutes before 10:00AM I texted Miki with the good news that Kai would be home that day. She asked if she could still come through. I replied that she was welcome anytime, but that it would still be some time before we physically walked out of the hospital. That’s the funny thing about Red Cross: it’s very difficult to get into, but once you’re in, it’s even harder to get out of.

Two young German volunteers came through to the ward and I let them play with Kai for part of the morning. The ward took on a decidedly festive atmosphere, as babies were declared fit to go home, or be transferred to lesser acute institutions; everyone was laughing and enjoying themselves as the early morning sunlight filtered in through the north facing windows.

Miki arrived at 14:00. As usual she looked fantastic. I met her at the Sisters’ station and showed her into Kai’s ward. She was thrilled to see him, and ecstatic that he was looking so well. I popped out to get Miki something to drink and eat, and when I returned, Keli was back talking to Miki.

“I was just telling your wife how beautiful she is,” she said to me as I walked back into the ward.

“She is,” I said, smiling at both of them.

Keli chatted with Miki for a while, and then left to finish off the paperwork. Kai was sitting comfortably on his mother’s lap, but after his earlier jumping up and down, he was content to sit quietly, and after half an hour, he drifted off to sleep in her arms.

An hour later we were still waiting. Miki was starting to get irritated.

“When are we going to get out of here? You know I’m not very good at waiting.” She was sounding irritable, and for a few minutes she started to switch. I could see 7’Teen, Kiska, Angel and Tooshie 8 all present through her eyes. They didn’t do anything, just came forward and looked around.

“That’s what I’ve been doing for the last three days: waiting and worrying.” I tried to calm, reassure and ground her. “We’re waiting for a spacer for his Asthavent reliever and for the Doctor to debrief us. It’s part of the process. Just smile and wave.” We’d taken that saying from the penguins in the movie Madagascar and used it between us whenever we felt we just had to grin and bear a situation.

By 15:30PM Miki was ready to leave.

“I can’t sit here any longer. I’m going to go and take a bus home.”

I wondered how she would’ve coped being subjected to the physical and emotion strain of looking after Kai 24/7 for a few of days. Would one of the older, stronger Alters have presented and done all the hard work? Or would the interminable waiting, nurses shouting loudly at each other, crying patients, the hard chair and a stiff and aching body, have precipitated one of the younger Alters appearing: Tooshie 5, Tooshie 8, or even Kiska. If it had, I wondered how they would’ve coped with the situation they found themselves in. I was fairly sure the younger Alters would not have been able to handle being in a hospital environment again. I could picture Tooshie 5 curled up in the corner under the counter, sucking her thumb and crying quietly to herself. I decided that I was glad it hadn’t come to that. “Just a few more minutes. Wait until 15:45PM, and if things haven’t moved by then, you can go and catch a bus. I’ll bring Kai home when they finally discharge him.”

I packed up his bags and blankets and took it down to the car, getting everything ready. When I returned, the other student doctor was in the ward with Miki taking her through the use of the Asthavent reliever, and showing her how to fill in his Asthma diary. I sidled in next to Miki and listened to the instructions. Miki was pretending to be very attentive, but I could see that her mind was elsewhere; she just wanted to be out of the hospital.

Bags on our backs, baby on my arm, my signature on the discharge ledger and we were on our way. I popped my head into the Doctors’ room to thank them for their hard work and wished them well. We were travelling into town, against the late afternoon rush-hour traffic, so we made good time back to the apartment.

Ryder and Zee were thrilled to see Kai, but I told them to keep their distance until he’d been bathed and had a change of clothes – there was no point in infecting either brother. But before I’d even had a chance to get Kai in the shower, he was back on his knees in front of the Lego box as though the last four days hadn’t happened.

Unfortunately, I wasn’t finished for the day. Miki informed me that Kai didn’t have any diapers for the night. That was exactly what I felt like: a trip up to the road to Pick n Pay. I was exhausted, smelt terrible and looked even worse, but I dragged myself down to the car and through sheer determination and willpower, made the errand.

When I finally arrived home and knew for sure that there was nothing more I had to do, I went for a long, hot shower, threw all my contaminated clothes into the washing machine, took a sleeping tablet and lay down on the bed. Miki had sweetly – and as beautifully as ever – washed and dressed Kai for bed while I was out. Small mercies. It was getting close to 18:00PM so I instructed all the kids to settle for the night and made Kai his evening bottles. With small, appreciative, mewling sounds he climbed into his familiar duvet and snuggled up to me; he and I settled down for the night.

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Reality, Disconnected…

Riding The Dragon

Flying In Circles

10-Aug-2015

I was really struggling to deal with The Dragon. She had no absolutely no concept of boundaries. When I asked her, repeatedly, to be home by midnight, she would, equally repeatedly, ensure that she arrived home after 02:00AM the next morning, or she’d just stay out all night. But she didn’t see that as a boundary intended to keep her safe, even when I explained it to her, she just saw it as something to fight against, a rule to break.

I reminded her that she was, even though she didn’t feel like it, the mother of three young boys, and that she had an obligation to them. Part of that obligation as I saw it was for her to be there for them during the night. I had no idea what the boys really wanted from their mother, and given the emotional, and behavioral chaos prevalent during the last five years, I was sure that they weren’t expecting anything consistent. But, I was equally sure that just knowing that their mother was home, or would be home if they woke up during the night would give them a tremendous sense of security.

When Zee was very young, we bought lots of books and did a lot of research on parenting trends and techniques. Some of the advice resonated with us, and some of it we threw out immediately. One technique that made a lot of sense to us, and that we both agreed completely on, was that of establishing a good day/night time routine that he could unconsciously rely on. It worked very well, and he settled into it quite happily. It worked so well that if was the first thing we did with Ryder and Kai when they were born too.

It’s also the one thing I’ve been able to hold onto through the years. Even during the worst of the “Bad Times”, when Miki and I could barely stand to be around each other, I still held onto this sense of routine. No matter what rage Miki might be in, or where she was, or what she was doing, when it came to 18:00PM, I would take Ryder, then about two years old, into the bedroom, close the door, and quietly settle him with his night time milk. I think to a large degree that it kept me sane during that chaotic time too.

I tried explaining this idea of routine to The Dragon when she was calm and rational, but even though she listened thoughtfully, I could tell that she didn’t understand it at all. I suppose it’s not too difficult to understand, since The Dragon has BPD. She was the dominant Alter when Miki was first diagnosed by Dr. L. Now, she was back, and the emotional dysregulation that typified BPD was also back, affecting her behavior.

At times she would fly into a blind rage, hurling abuse at me, and anyone else close. She would swear in a very, strong, Coloured accent, her language taking on a decidedly sinister Cape Flats gangster tone.

At other times, she was this powerful, effective woman, capable of: taking two young boys to the ER for treatment; or of disappearing for two days and getting herself a job; or of pushing her girlfriend’s car down the road when it broke down.

Very rarely, she would be calm and rational around me. She would talk quietly and we could discuss our crazy lives. Just yesterday morning, she’d sat down quietly on the bed, next to me. She’d looked smaller than her Alter’s twenty-four years, almost child-like, hunched over, hugging her legs to her chest.

“We broke up again,” she said.

“Who: You and Taya?” I asked.

“Yeah, but it’s Ok, we made up again.”

“You’ve done that a few times now,” I replied gently.

“She’s very difficult to deal with.” Her voice was low and serious. “She’s either fighting with me, or begging me to be with her. When I’m nice to her, and help her out, she doesn’t notice, she’s never grateful for anything I do. But then she bursts into tears and begs me to help her, to be there for her.”

“I know what you mean.”

“She’s very jealous and possessive. She shouts at me for looking at other girls, even when I’m not.” She was genuinely confused and hurt by her girlfriend’s behavior and she’d come to me, looking for advice, or at the very least, someone to listen to her.

When we’d first started treatment, YvdH had helped me tremendously in understanding BPD: how it expressed itself; what was the internal cause of her behavior; what I could do to help her; and what it might do to me and the family. By understanding her condition and her behavior I was able to regulate my reactions to her. For me, at the time, understanding was the key to dealing with her condition and subsequent behavior. During the “Bad Times” I was completely confused by her behavior, my reactions, and our life together, which had somehow turned from pure, domestic bliss, to absolute hell. But with an understanding of her diagnosis I was empowered to better manage my reactions to her outbursts. I was by no means an expert in dealing with her, but at least I understood what was happening and I’d found something that did work: compassion.

Then she’d gotten pregnant with Kai and overnight she’d healed, or so it appeared to everyone. She was off her medication for the entire duration of her pregnancy and at the same time, all her BPD symptoms had disappeared. I didn’t have to manage her; she was doing it herself.

After Kai’s birth, his resuscitation at six weeks and our move to Johannesburg, Miki’s emotional state had deteriorated again. But this time, I didn’t have to deal with BPD based outbursts. She wasn’t bursting into tears one minute, begging me to love her, and then flying into a rage the next, something else was happening. Neither of us was sure exactly what was happening, just that something was, and it was different to her previous problems. It was only when we got back to Cape Town a year later that her Alters started presenting openly, and she was diagnosed with D.I.D.

Over the following months a number of Alters were identified, each of them with distinct personalities, behaviors, and traumas, and in some cases psychoses. The latest Alter to present, and by far the strongest and most complex was The Dragon. She has BPD. We’d come full circle in a sense.

Dealing with Miki by herself when she had been exhibiting symptoms of BPD was hard enough, but now I was dealing with a far more complex situation: Miki had a number of Alters who presented randomly and to varying degrees, and one of them, The Dragon, a very strong and dominant Alter was displaying behavior typical of BPD. But unlike previously where her emotional dysregulation was consistent and I had a framework to work within, I was now struggling to identify and manage The Dragon’s BPD behavior within the broader context of her D.I.D. I couldn’t treat Miki, or any of the other Alters – besides The Dragon – as though they had BPD, because they didn’t. This lack of a framework for managing her emotional outbursts meant I didn’t have any techniques for managing any situations when they arose. Instead of me being receptive to Miki’s, or the Alter’s emotional states when they arose, I found myself falling back on my own reactive behaviors that I’d developed before we’d entered therapy. These reactive behaviors were not useful for The Dragon, and not useful for us as a family.

Riding The Dragon