#truncus

[sassybashi]

My truncus is skew

[hogwartshawk]

Gryffindor Common Room

Hello my little Gryffindors! The password is ‘Centaur’ and will change monthly. There’s butterbeer and hot cocoa inside so feel free to make yourself warm by the fire and introduce yourself to your housemates.

As your head of house (and herbology teacher), I’d like to know about an adventure you’ve had before starting hawk. It can be anything, but I always find it’s a good ice-breaker.

Also, stay out of the “don’t click” area if you want to keep your life. I know you’re curious now, so I’ll fulfill your curiosity without you having to go and put yourself in harm’s way. It’s a virtual container of secrets, passwords, and dark objects. Sometimes dangerous creatures are kept there as well. It changes when necessary. All are lethal and no use for you to be there.

So, tell me about your adventures! I’ll make sure to reply to your stories!

-professor truncus

[jeanusmle]

The aortic  arches  connect  the truncus  to  the paired dorsal aortae

[raphaelasher]

Conversations in the Waiting Room

At 7:30 in the morning we stood in a large elevator. Raphael was in his hospital bed and two nurses managed his equipment. With us was another couple we hadn’t met. The mother was holding her 18-month daughter in her arms. We were all exhausted and scared. No one spoke.

As our children were taken away to surgery, we were ushered into the waiting room. The room was brightly colored with games and toys for children to play with, televisions blaring children’s programming, and a small coffee/food room. At the entrance of the room was a desk where families signed in. Every few minutes a phone would ring and the woman at the desk would call out a name. That person would be connected to the surgical staff operating on their child. These calls are routine: “We’ve just finished up the surgery prep.” “The repair to the aortic arch is complete.” “The repair to the truncus is complete.” “The surgery is complete…”  The time spent in that waiting room felt like a dream with few lucid moments to remind me that I was awake. It wasn’t really waiting as much as it was trying not to think. The real waiting for us took place one floor below, in the CICU waiting room. There we waited for signs of progress, signs that our son would be ok, and signs that we might be able to safely take him home.

As we waited, we were surrounded by others. Some we saw a few times, some we saw every day. Some liked to talk, and some just kept to themselves. The conversations typically began with asking about a child’s condition and their progress. School teachers, construction workers, pharmacists, lawyers; we learned how to speak expertly about conditions we had never before heard of: tetralogy of fallot, ventricular septal defect, dilated cardiomyopathy,  truncus arteriosus, etc. Many of us received packets of information from the medical librarians at the hospital that explained our child’s CHD. The medical literature, being surprisingly clear, straightforward, and easy for a layperson to understand, brought to mind my own research, and qualitative humanities work in general. Research into the complexities of the human body is significantly more approachable than research into the complexities of the human mind and spirit. A body is made to function in specific ways, so the trick is to explain why it’s not functioning in those ways and then address the issue. With the mind and spirit, though, there is no blueprint. And with the medical side of things being fairly straightforward, it helped us in the waiting room think more about the future: “Once his oxygen flow is down to 3 liters, they can move his NJ tube to an NG tube and begin stomach feeding.” “She still has a hole in her heart, but for now it helps release pressure and eventually it should close on its own, so they’re not going to fix that during the surgery.” “His lungs are partially collapsed, so they’ll continue the chest physiotherapy until his x-rays clear up.” So, for the most part, we talked about the medical side of things.

But people did talk about issues of the mind and spirit, though often not with strangers, and often not explicitly. It was clear that having a child with CHD posed significant existential questions for all of us in the waiting room. Almost without question, conversations ended with a statement like “we’ll be praying for your son/daughter.” Talk of “God’s plan” and “having faith” are common themes in waiting room conversations. The more troublesome moments were the overheard conversations that hinted at the relational struggles that parents of CHD babies face. A young father on his phone, pacing the hallway, explaining that he’d lose his job if he didn’t go back to work the next day, but would destroy his marriage if he did. Another father on the phone, arguing with his spouse about how they would take care of their other child at home and who would stay with the one at the hospital. Navigating our personal relationships in the midst of waiting to see if and how our child will recover is a daunting task. Figuring out how to give your partner a break without neglecting your own need for a break is difficult in normal circumstances.

The one thing that was almost never discussed but always present was the possibility that our children might not return home with us. One couple that we spoke with regularly, mentioned having four children. After daily conversations with them for a few weeks, they revealed that one of their older children also had heart complications at birth and did not make it. A grandmother told us that one of her children died from a CHD years ago, before a surgery option was available for that particular CHD. We saw one family flown to Philadelphia in the hopes of a kidney transplant. And then we also overheard the doctors speaking to the family in the room next to us in the CICU. We weren’t trying to listen, but we overheard “…surgery just isn’t an option…the veins are too small…probably won’t recover…” None of the procedures that the kids at our hospital go through have a 100% success rate and for some, there simply isn’t a procedure. For our neighbors in the CICU, we don’t know what’s going to happen. We don’t even know their names. But we saw the mom and dad in there just about every day. And one evening the child’s older brother came in and made a sign with his younger sibling’s name on it to hang above the hospital bed.

Throughout it all, I’ve tried my best to keep the “worst case scenario” out of my thoughts. I certainly never brought it up to anyone in the waiting room, and my wife and I have only ever hinted at it as a possibility, without going into detail. Sure, we plan for the future, but there are some futures that you just can’t plan for. Now that we’re home, we keep our faith in what we’ve learned to look for, in the knowledge that the hospital is only 40 minutes away, and that we have communities to turn to when we have questions.

The last thing that got brought up in the waiting room was the complexities and uniqueness of each case. These conversations reminded us that even though the body can be evaluated and its problems addressed, each case of any CHD will present in its own unique way. This simple fact offered both comfort and a little uneasiness. It’s scary that our son’s truncus will be slightly different than any other case of truncus, but at the same time, what parent doesn’t want their kid to be a unique snowflake?! But seriously, it means that his surgeon, his cardiologist, and his pediatrician will each evaluate him at his own pace and for his own unique body. Just the other day our pediatrician told us that our son was one of his most interesting patients. We’re thankful that he’s the type of guy who went out and researched more about truncus and about CHDs so that he can better care for Raphael. When we spoke to our son’s surgeon after the surgery, we could tell that he thought it was cool that he was able to successfully operate on a baby so small. He didn’t say as much, but I imagine that each successful surgery, especially when he only performs one or two like this a year, are very rewarding. My wife and I likened it to one of those rare lectures we’ll give our classes that are incredibly complicated but, when done well, can be inspiring to our students and can renew our own energy as teachers. But you know, with life and death on the line.

[raphaelasher]

Should We Stay or Should We Go? The Mystery of the Stepdown Unit

This morning, as I was leaving our room to get some breakfast, I ran into the guy that stocks up the cardiac stepdown unit. He asked how things were going and I said that we’re going to be discharged tomorrow. He got excited, but as he did a member of the non-medical staff walked by and, without stopping, said, “was supposed to be today.” After having just finished a long conversation with the nurse practitioner who advocated to us that we should stay another day, this remark was upsetting.

While in the CICU, we were waiting for the chance to come to the stepdown unit (CSU). Throughout the hospital, you see parents holding infants, or carting babies and young children around in little radio flyer wagons. The parents are carrying telemetry boxes and many have a feeding or medicine dispenser hooked up for their child. These are the kids in the stepdown unit. And what we were told was that once Raphael had recovered enough, he would be sent to the CSU where we would learn to care for him and, once we felt comfortable with everything he would need, would be discharged. We’ve heard of people getting discharged after only a day or two in CSU, but for the most part, these have been return patients who are here for a follow up surgery or because there was some sort of complication after an earlier surgery. In other words, from what we have seen, parents who leave the CSU quickly are parents who seem to already know how to care for their kid. On the other end of the spectrum are families that have to stay in the CSU for months. Sometimes its kids waiting for a transplant who are stable enough to not need minute by minute supervision, and sometimes it’s kids who just need to have medical staff present for an extended period, for whatever reason. From what we were led to understand, most families are somewhere in between.  We expected that we would be in stepdown for a week or two.

We were admitted to the CSU Sunday afternoon. On Monday morning they told us that we would likely be going home on Tuesday. We were both in shock and I’m sure it registered on our faces to the nurse. We still had to learn how to administer his medications (he’s currently taking 6 different medications, five of which have to be administered multiple times each day), insert, remove, and care for a feeding tube, administer food and medicine through a feeding tube, tend to Raphael’s incision, learn what to look for in a baby with CCHD, get a cardiologist and an appointment set up, and set up an appointment with his pediatrician. Additionally, like all small babies, Raphael had to pass the infant car seat test. And unlike all small babies, we had to make sure that he was stable without supplemental oxygen and that he was able to tolerate life without methadone. His last ween from the methadone had been Saturday, and he had tolerated it well, but we were still a few days away from him weening off completely. Leaving on Tuesday, just a day and a half after getting placed into the CSU, just didn’t give us enough time to complete what we needed to complete, let alone make us feel comfortable with taking it all on by ourselves once we got home.

Thankfully, a few nurses realized this and plans seemed to change so we would leave on Thursday. Monday was a full day of instruction. From the time we were up at 7, until the time we went to sleep at 11, there was not a moment of the day where we were not learning something about Raphael’s care, taking on that care ourselves, or prepping to leave (I forgot to mention the SSI paperwork and setting up meetings and appointments with Social Security and physical and occupational therapists). By Monday night we still hadn’t inserted his feeding tube, cared for his incision, met with our social worker, or had the car seat test, but we figured Tuesday we would finish all the learning, Wednesday we would have a full day to practice with nurses to supervise, and on Thursday morning we would feel pretty confident taking him home. Then, on Tuesday morning, the surgical team came in.

Our surgeon’s two nurse practitioners met with us Tuesday morning and told us that we would be discharged Wednesday after Raphael’s last dose of methadone. Then they told us that they had set up our first cardiology appointment with the doctor that diagnosed Raphael shortly after he was born. With all that we still had to do, we did not feel comfortable leaving the next day. And as for the cardiologist, we had been told that we’d be able to choose our own, and our first interaction with the cardiologist we had been assigned was when he came into Lyndsay’s hospital room and, after stating his name, said our son has truncus arteriosus. He’s clearly a good cardiologist, and he saved our son’s life, but we wanted to develop a relationship with our son’s doctor, a person who will guide his care through multiple other surgeries. It’s hard not to see the doctor that diagnosed Raphael and not also remember the shock and pain that went along with that first meeting. We wanted to move on. The team seemed pretty unmoved by our concerns.

Stubborn as we are, we continued to voice our concerns to our nurse, who told us that she would make sure we got the cardiologist we wanted. As for the discharge date, she didn’t think there was much to do. She assured us that we’d be ready, and made a plan to get the rest of the education in by the end of the day. However, with Raphael still needing an ultrasound to look at the blood clot in his leg and x-rays to check the progress of his lungs, we never got to a point where incision care was discussed, and by the time we had a free moment to insert his feeding tube, it was close to midnight. And what a disaster that was! For whatever reason, neither the nurse nor I could get the tube to go down his nostril, no matter how much KY jelly we used. Eventually we switched nostrils, got the tube in, and verified its placement. Lyndsay and I were exhausted and our nurse just looked at us and said, “You know, you don’t have to go home tomorrow. I’ll talk to the charge nurse about it.”

So this morning, just before the woman I passed seemed upset that we were staying an extra day, the nurse practitioner came in. She checked on Raphael and told us that we were welcome to stay if we thought it would be helpful. Additionally, she said that all of our concerns were warranted and that having a little supervised time on our own is really helpful. She explained, as a couple other nurses had before, that the surgical team only looks at the patient. And Raphael was ready to go home today, perhaps even yesterday. But the surgical team isn’t as concerned with Raphael’s caregivers readiness. And while Lyndsay and I could have been ready to leave today, we opted to stay an extra day. About an hour ago we put in Raphael’s feeding tube and everything went fine. We made all the appointments needed, and family members in the area have made sure that our home would be set up, complete with a designated medicine prep station, by the time we get there tomorrow.

So, tomorrow, we go home. We have learned more in the past three days than I ever thought I could in such a short stretch of time. We were also paired with a wonderful cardiac mentor whose son was born with truncus 12 years ago, and she’s been in contact with us for the last two days. And we have our friends, family, and a whole new support network of people and parents with experience with CCHD who we can turn to for all types of support. And come tomorrow, with all that knowledge and support, we’ll be ready to go home.

[raphaelasher]

Field Notes from the CICU

We wake up at 6:00 in my sister’s spare room. Lyndsay showers first while I prepare breakfast and the pumping supplies. Equipment that once seemed so foreign, with parts that I struggled to detach, now comes apart easily in my hands. By now I have a system for washing, drying, and putting it all together. I return the equipment to the room we’re staying in and once Lyndsay has set up, I bring her breakfast. After eating my own breakfast and showering, I pack my bag for the day. Typically it has a few books (currently The Hunger Games, The Invisible Man, The Martian, and The Lorax), my notepad, electrical cords, an assortment of pain killers, a bottle of zantac, some low dose Xanax, toothbrushes, pens, a thermometer, a small book of tehilim, a few snacks (mostly chocolate), some sanitary pads, and a collection of bills, medical forms, and medical journal articles. When Lyndsay finishes pumping I wash the equipment and our morning dishes while she continues preparing for the day. By about 7:15 we hit the road. What was a 15-minute drive during the holidays has become 30 now that work and school are back in session, so we tend to arrive just as the CICU opens back up at 7:45.

Outside the doors to the CICU is a bell with a video camera. We ring the bell and after they verify who we are and who we’re coming to see, and once the nurse’s station has been notified, the double doors open and we can enter the CICU. Once inside, we turn left at the doors and approach the industrial hand washing station. As we scrub our hands we read the flyers posted above the sink. Under a heading titled “Fun Opportunities” is the schedule for the family CPR class required before discharge. It’s difficult to tell if this is a bit of off color humor or if the class is indeed intended to be fun. Having taken the class, we can verify that, thanks to the instructor, the class is at least weird, if not fun. Her darkly dyed hair, flowy clothing, and flourishing movement, combined with her near constant liturgy of terrifying tales of near death experiences, injuries, and infections, calls to mind some crazy Hogwarts professor. When all is said and done, we’re sure she could save a life if it comes down to it, but we’re less sure that we’ve gained the skills to do so ourselves. With any luck, we’ll never know.

There are also flyers that list the times for the other required courses. First, the discharge class that taught us about the medicines we’ll be administering to Raphael, how to recognize an emergency situation, and what to do in such a situation. And the last class we have to take, the car seat class, taught us that you, yes you, are doing it wrong. Something like 90% of car seats are being used incorrectly. We also learned that there is almost no situation where a rear facing car seat is not the best choice. Like, if they made adult rear facing car seats, unless I was driving the car, I would want to sit in one.

To the right of the handwashing station are a series of metal and glass storage cabinets with an electronic padlock. These cabinets contain the tools, gadgets, and do-dads that help the CICU function. Most mornings we arrive as the cabinets are in the process of being restocked. One of the guys who does this, told me about how much he loves his job. Working early makes it possible for him to pick up his daughter from school each afternoon, makes it so he never gets stuck in traffic, and the work itself is one of the many vital tasks that helps the CICU save lives, so contributing to that in any way is rewarding. Throughout the day, another person will fill up a cart with supplies and take it from room to room to restock. When the nurses and doctors work with our baby, not a moment is spent searching for a tool or looking for one of his medicines. Everything is always already prepared and ready to go for whatever they need to do.

180 degrees from the supply closet, against the far wall, the rooms of the CICU. Rooms 1 and 2 are the only ones with actual doors and walls. The rest can be closed off with curtains, but otherwise have waist level counters and partial glass dividers that separate each from the other. And unless a minor surgery is taking place or a mother is breastfeeding, the curtains tend to remain open. For the most part, rooms 1 and 2 are reserved for older kids or babies that need to be quarantined. We’ve seen some kids in those rooms playing video games, but for the most part, none of the kids in the CICU get to do much that gets their blood pressure up. To the left of these two rooms is another set of double doors. They open to the staff elevators. When a kid gets taken to surgery, they go through these doors, up one floor, and into the operating room. When Raphael went up we rode with him and another family. I don’t quite remember exactly how we got there, but Raphael was taken one way, and we were ushered into the surgery waiting room. To the right of the two rooms is the rest of the CICU. We are only familiar with our own section, which contains a total of eight rooms, 2 with doors, and 6 with a curtain and some cabinets. Each row of cabinets is filled with supplies, and at the end of each section is a sink with a soap dispenser, a sanitary foam dispenser, and a sanitary gel dispenser. The nurses seem to rotate among the three options and I’m never sure if there’s a rhyme or reason to their choice. Considering they sanitize their hands hundreds of times a day, it very well could just be for a little variety. Anytime they approach a patient’s bed or whenever they have touched or are going to touch any piece of equipment, they sanitize their hands. And so, we do as well. I’ve likely washed my hands more in the 21 days since December 19th than I did the 365 days before. We balance the handwashing and sanitizing with generous application of lotion, but still, by the end of each day our skin is desiccated. Hundreds of small white lines trace cracks across our hands. As I open my hand and extend my fingers I see the skin pulled taut over the flesh and bone beneath. I wonder if the nurses’ bodies adapt or if it’s just one of the marks of the job.

The floor is made up of large sectional tile spaces – unassuming maroon, tan, and a yellowish beige – flowing like waves across the unit. Parts of the ceiling are what you might consider standard hospital/school white tiles with interspersed fluorescents. Other parts add to the wave like quality of the floor. A yellow plaster section, complementing the unobtrusive colors of the floor, contains recessed incandescent lighting that shines down on three island sections across from rooms 3-8. On the island facing us sits two computer monitors that show the vital signs of all the patients in the unit. I find Raphael’s and compare it to the others. Heart rate, at 142 is OK, but not as low as it has been. His O2 levels are at 94%, a solid 2% above what they hope for. His arterial line reads his blood pressure as 82/36 (52) and his cuff reads it at 57/47 (50). His respiration rate sits between 16 and 60, but usually sticks around in the high 30s or low 40s. As our doctor has been saying, he’s doing reasonable, especially for his size.

The islands also have a couple of other computers on them, which I’ve seen used for anything from reading lab reports to reading what looked like a shopping list. But really I’m only guessing, because it’s all just numbers and lines on a screen from where I sit. The nurses also use the island to house their backpacks, to print off any reports they need, and to store the multi-colored stickers used to mark the different lines that each patient has. Pink for Sunday, orange for Monday, green for Tuesday, etc. The base of the islands, along with the walls and the cabinets of each room, is a cool pastel orange – calming and childlike. Raphael has toys this color. One day he’ll press a glob of silly putty just this color to a comic strip and get blown away by the everyday magic of words and images transferring from one object to another.

In between every other set of rooms is a station with two computers where the nurses sit to enter data about their patients. Above each room, parallel with the nurse’s station, is the room number and a small light unit. The lights are green and orange and, with an accompanied steady “ding…ding…ding”, will flash when something is amiss with the patient’s monitor. The soft ding is likely meant to not alarm new parents in the CICU. And when you’re new to the unit, really any sound coming from your child’s room will be alarming. Beyond the unobtrusive sounds like phones, the rattling of storage refrigerators, the bubbling of the respiratory machines, and the music coming from the “Care” channel (a channel dedicated to video imagery of calming nature scenes accompanied by music that’s vaguely new-agey and completely innocuous), there are plenty alarms that sound worrisome. The slow methodical ding mentioned above happens when a stat isn’t what it’s supposed to be. More often than not this is because the baby moved in a way that made it difficult for the sensors to read the stat. Then there’s the doorbell sound (think: entering a convenience store) that indicates a medicine or a feeding line is empty and needs to be replaced. And then there’s a much more rapid “ding ding ding” that repeats if one of the stats becomes dangerously wonky. This typically happens when a baby is agitated (because really, whose blood pressure wouldn’t spike when a stranger is trying to wipe you after you’ve soiled yourself). But sometimes it does means something different, something worrisome. And it’s nothing that I’ve been able to pick up on, but occasionally the rate of beeps combined with a quick glance at the screen will cause five or six members of the medical staff to rush to a bedside. If it’s a really serious issue, the CICU shuts down and any visitors are asked to leave.

Hanging down from the ceiling towards the back of each room are two large electrical units that can swivel about. The one to the left of our son’s bed houses the respiratory equipment. At this point most of it is turned off. When he was intubated, though, a long accordion tube, connected to oxygen and to a monitor, traveled directly into Raphael’s mouth to help him breathe. Today he sits with a much smaller nasal cannula blowing into his nose. The left side of the bed also housed his chest tube back when that was needed. As post-surgery blood found its way into parts of his body that it shouldn’t be in, the tube sucked it out and deposited it into a container at the foot of his bed. The other day I glanced at the room next to ours. The baby in that room had a tube and for the briefest moment I thought “why the hell is there a bloody tube coming out of that baby!?” briefly forgetting that my son was dealing with the same thing just over a week ago. That his chest, where there is now a neat 3-inch scar, was once left open for two days and covered only by a thin screen, as the doctors waited for the post-surgery swelling to go down. We didn’t take any pictures of Raphael like this. Instead, we just have it in our memory. It’s more than enough to remind us of what our son’s body is capable of and that as his parents, what we might consider nerve-wracking to see in another child, will be something we simply accept and figure out as best we can when it happens to our own. Because it’ll be what our child needs us to do.

To the right of his bed, attached to the second electrical unit, is the screen reading his vital stats and his automated medication and food dispensers. Each dispenser is programmed to drip out a certain amount from a syringe over a specified amount of time. Medications all go into the vein in his hand and food goes into his NG tube, from his nose to his gut. Just three days ago, because of the high oxygen flow he was on, he had an NJ tube that bypassed his stomach altogether and took food straight to the small intestine. The other lines coming from Raphael are his arterial line, used for drawing blood and to measure his blood pressure, the lines from his body sensors detecting his O2 levels, heart rate and respiratory rate, and his cuff taking regular external reads of his blood pressure. The only one of these lines that was ever a concern for us was the arterial line, going into his femoral artery. For the first couple of days, the line was messing with the blood flow to his leg,  turning it a grayish purplish color. They started him on a heparin drip which cleared things up, but when they started him on Ativan to wean him off the Fentanyl, it caused a dangerous drop in his blood pressure.  This, of course, has all been worked out, and today the arterial line was removed. After not being able to draw blood from the line last night, they used an ultrasound and detected a small blood clot, which they’re now treating with aspirin. Like everything else, they just take it as it comes.

The bed that he’s on is a white metal crib, with a crank at the end to raise a part of it to an incline. It’s his second bed here. The previous one was considerably more high-tech. A line connected from the top of the unit to his chest tracked his temperature and a heating lamp above the bed was used when he had trouble maintaining his temperature. He was held in by four plexiglass walls, each of which could be folded down for when we and his nurses wanted or needed to get closer to him. The switch to the low tech bed/crib was a sign of his progress. It meant that he would be headed to the stepdown unit one day soon. And today was that day. I’ll have more to say about this unit, the waiting areas, and the rest of the hospital in the days to come. Up until today, our days were primarily spent in the CICU.  

[raphaelasher]

Caring for Parents Caring for a Baby with CCHD

The one thing I know for sure is that it really is the thought that counts. I may lose my temper, get frustrated with you, or I may just suddenly tune you out altogether. But at some point I will mentally return to the moment you tried to help and I will be thankful and humbled by the fact that you are spending your time and energy trying your best to help us out.

The difficult part of caring for a parent of a child with a Critical Congenital Heart Disease is that the parent may not know what they need, or they may need one thing one minute, and the complete opposite the next. I may be grateful to enter into a conversation about comic books, then suddenly become immensely frustrated at having to put forth the energy to maintain a conversation and demand quiet. With this in mind, we have been putting together a list of the things that have worked to bring us comfort and the things that have caused us some consternation. We think of this list not as hard and fast rules, but as things that have been reasonably consistent during the last few weeks. As we learn to care for our son in the CICU, we are also learning what we need from our friends, family, and strangers who have overwhelmed us with their kindness.

Provide Help Rather than Offering Help Especially in the first few days, but also as the weeks wear on, it has been difficult for us to think about what we need. Vaguely we know we needed things like food, rest, to manage our personal lives away from the hospital (work, rent, bills, etc.), and distractions, but we are often so focused on the here and now that it becomes difficult to manage these otherwise mundane tasks. The greatest help, both physically and emotionally, has been when people have been able to intuit our needs and help us provide for them. When Lyndsay’s parents (who had been taking care of our apartment and getting our mail) returned to Michigan, my step-mom jumped right in and said she would drive to our house to get the mail and pick up any items we find we may need. My sister practically made us move in to her spare bedroom so we could be close to the hospital. Friends have been coming to visit and will bring snacks for us, without us asking, and others who live too far away to visit have sent us care packages with snacks and welcome distractions. These gestures of support have been amazing, and they have made our lives here way less complicated. This is not to say that we don’t appreciate people asking what they could do to help, it’s just that we’re often not in the mindset to give a good answer.

Be OK if We Don’t Want or Use What You Provide All that said, sometimes people intuit wrong (which is usually because we may want something one minute and don’t want it the next), and bring us something that we can’t use, or don’t really want at the moment. Please be OK with us turning you down. This hasn’t happened a whole lot, but on occasion we will get something that we don’t want. A friend brought me a magazine one day. I looked at it briefly and said, “I don’t want it, but thanks.” My friend was awesome and just said, “That’s cool.” Maybe she returned it, maybe she kept it for herself, I don’t know. But I appreciated the ability to say no to help when it wasn’t something that would actually help. If you’re worried about spending money on something that we may or may not use, consider getting something that’s easy to return, or something you’d be happy to have for yourself. Then you can give yourself a gift for being so thoughtful!

Visit, Without Asking Following the theme where we make as few decisions as possible, if you know that we’re going to be at the hospital, just plan on visiting and don’t worry about asking us if it’s ok for you to visit. For the most part, it’s always ok. You can text us to say that you’re planning on stopping by at a specific time, but you don’t really need to ask us which day will work better for us. Most of the days we’re just at the hospital, so that’s a decision we’re happy for you to make.

Be OK With a Brief Visit While we love having visitors, because our moods shift, and because we want to spend time with our baby when he’s awake and moving around, our visits with you may be shorter than you and we would like. So even if the visit lasts only five minutes, we are so thankful to get to spend the time with you, and even more thankful when you understand how our attention span might prevent us from spending more than those five minutes.

Let Us Tell Our Story We’re learning a lot: about our son, his CCHD, and our family. Telling personal narratives allows us to structure and give meaning to our lives. When you give us the time and space to explain our son’s condition, to talk about what it was like to find out about it, to express the feelings and sensations that we travel through each day, you help us understand who we are and what we’re going through. The more time and space we have to tell these stories, the better we will understand who we are as a family. There are few gifts more powerful than a good listener during a tough time.

Talk About the Weather OK, not really the weather, but something we find interesting and that we’ll find distracting. The toughest day we had was the day of our son’s surgery. We were both a wreck. The most unobtrusive statements caused me to lash out at someone or burst into tears. At one point, when it had been a while since we’d heard from the surgery team (they called us every hour or so to let us know their progress), my friend Joe asked what classes I had taught in the fall. I told him and he started asking me questions about them: what book did I use, what was my approach to teaching it, what was my favorite part about teaching it? For about 25 minutes, I left the stressful world of the surgery waiting room, and entered a world of two colleagues sharing teaching strategies. It was one of the most important moments of the surgery for me because it deleted some of the painful time of waiting and replaced it with the joy filled time of an intellectually stimulating conversation.

Be OK With Silence It can be hard to pick up on body language cues, but sometimes we just need to be left alone, and picking up on those cues helps us have the comfort of friends without the obligations that typically go along with them (e.g. conversation, reciprocation). That doesn’t mean that we want you to leave, but it may mean that we just want to be in a space where it’s ok for nothing to happen and for no one to have anything to say.

Help Us Provide Care for Our Child in Our Way Our son’s CCHD is complicated, and as with any major medical condition, there are significant risks. As parents, these risks can feel crippling. On paper, a 90% success rate sounds awesome. As a parent, though, it means that 1 out of 10 kids who go through this operation won’t make it. And those odds are not good enough for any parent. Friends and family know this, and they try to help. Getting information about how care is administered, what progress is being made in the field, how we can access more research on our son’s condition, and who treats cases like this and how, are integral pieces of information that will help us determine our son’s future. Just make sure that you give us the time and space to digest this information. We’ll be helping our son deal with his CCHD for the rest of his life, so his care will be a process that we figure out over time. While we appreciate all the bits of information we receive, ultimately we have to weigh them all together, so no single bit of information will ever stand on its own. Combined, we will figure out how all the information will help us provide a fulfilling day to day life for our child, and a productive and effective system of care for him and for our family.

Offer Empathy if You Can; Sympathy if You Can’t This is simple, but important. Over the last couple of weeks, I have not been the stable person I usually am. It’s like I’m just waiting to get angry at someone. It’s not rational, and what I’m often looking for is just someone to recognize that I am emotionally distraught. The other day I received an email from a friend offering empathy. He told me about a similar, but different situation that he had when his son was born. Emails and conversations like this remind me that I’m not alone, that others have made it through this and a lot more, and that I will too. But often people don’t have an experience that is similar. In these instances, your lack of understanding of my feelings and emotions is one of the most helpful things I can hear. Just as empathy reminds me that I can get through this, sympathy confirms that my struggle is reasonable, and to be expected.

Don’t Apologize for Not Visiting There is no bad reason for not visiting. I’ve heard a number of times people say that they felt bad for not coming sooner, or at all. My thoughts on this are that if you love us and you want to support us, you will do so in whatever way makes the most sense to you. I’ve had friends tell me to text them the name of a restaurant that will deliver food to me so they can order me dinner. I’ve had friends send SmileGrams to our son’s room to let us know that they’re thinking of him and us. And we’ve had many people donate whatever works for them through our fundraising site. These donations will help us get through the many expenses that will arise as we continue to learn to take care of our son. All of these forms of care remind us that we have a support network that wants us to succeed and is going to do what they can to help make it possible.

[raphaelasher]

The Cost of Care | Our future with truncus part 2

When a procedure lasts more than a few minutes, Raphael can get pretty agitated. A few days ago he cried for hours at a time, completely inconsolable. After they adjusted his medication, his rage, as we’ve been calling it, has been a little more predictable. Yesterday morning, for example, they were inserting a nasogastric (NG) tube to pull some of the excess air from his stomach. The air is there because with the pressure up on the nasal canula, some of the flow that should be going to the lungs ends up in the stomach. After the procedure, I spent about 35 minutes consoling him – patting his back, speaking to him, offering a pacifier (with a tube going through his mouth, I realize it was an unlikely prospect, but hey, he was in his rage and I was willing to try anything!). Finally, he calmed down a bit and eventually fell asleep. Once he was down, I just about collapsed into the chair next to his station.

While he didn’t have an additional tube inserted this morning, the situation was similar after the respiratory therapist worked with him. It has become part of the routine. The routine varies here and there, but for the most part is pretty predictable. As parents-to-be, people loved to tell us that we should enjoy our sleep while we can. That once our baby comes into the world, exhaustion would be our new mode of being. Those who were parents themselves would add that the love they felt for their child often served as a counter-measure for their lack of sleep. The one balanced out the other. And that’s all true. Our love for our baby is beyond what either of us could have anticipated. What feels different is that the love itself can become exhausting. His stats on the monitors tell a story about what’s going on in his body. When he gets agitated, the stats can go haywire. And while no parent likes to see their child in distress, when our post-surgery CHD baby enters a state of distress, we see his stats go up. This means that his heart and lungs are working a little harder. We don’t just worry that our baby is upset; we worry that him being upset might slow or hinder the healing process. And so our own distress becomes a part of the routine. After his spats of rage, I naturally have to collapse into a chair.

When we’re with him, it’s hard to recognize the emotional toll that comes with spending so much time at the hospital. Sometimes it comes out as anger towards a family member or friend that has stopped by to help. But often it comes out through speaking with other patient’s parents and families about what our son is going through. Lawrence Langer wrote about how people who go through traumatic events often have trouble talking about the events because they feel or know that others won’t fully understand what the event was like or how the event effected them. As a recourse, it’s not uncommon for those who go through such events to recount the story with others who were with them or with those who went through something similar. But part of this little community that’s developed in the waiting room is the expectation that others will listen. So just as I tell our story, I find myself also listening to the stories of others. And these acts of reciprocation, so far as I’ve experienced, are never half-hearted. Here in the waiting room, we listen to each other with all our energy and until the person telling has finished what they need to tell.

We know that the level of emotional output will change over time. Indeed, just in the two weeks since his birth and diagnosis we have felt significant shifts in how and when we become emotionally overwhelmed. But we’re learning to roll with it as best we can. We know that most days to come will be much easier than the ones we’ve had so far, but we also know that the normal worries that parents to healthy babies are concerned with will likely be a little more worrisome for us, and a little different. Like the financial costs, the emotional costs will be something we have to learn to bear.

As always, thanks again for reading and for all the support. If you’re able to help out financially, it would be greatly appreciated.