4

I arrived at Michigan’s Mott Hospital carrying my Human Blood box of frozen breast milk. The walk to Sophie’s room on level 5 was familiar, a route I had taken for a week in the winter and a few days in the spring. I saw nurses I recognized, and some greeted me by name.

Over Sophie’s first few days back at Michigan, we settled back into routines we had developed during her earlier visits. Jana usually came in the morning, me in the afternoon. She was in charge of communicating with the medical team at rounds; my job was more about entertainment. Sometimes I missed being part of rounds and being able to ask my questions directly; when I did mornings in Boston I felt I had built up a good knowledge of Sophie’s condition and how it was being treated.

Just a few of the Team Sophie photos that decorated her hospital rooms. I may have photoshopped one.

In the evening there was often a care package of dinner waiting on our doorstep, delivered by one of our friends who had formed "Team Sophie" to cheer for her and to help us out. Their generosity knew no bounds. They sent us messages and gifts and changed their Facebook photos to show their support. In Boston, some members of Team Sophie even clubbed together to buy us a personal chef service for a couple of weeks. Now that we were home, they cooked for us themselves. Ann Arbor was a foodie place and professors among the foodiest of the foodies in town, so the dinners were often quite something, and came complete with worldly tastes, booze, and dessert. We found no better way to unwind after another day in hospital than digging through a bag of freshly prepared treats.

Sophie’s vomiting issues continued to confuse the doctors, so much so that on a couple of occasions they had to transfer to their intermediate care unit, a half-way house between the ICU and the floor, so she could get closer monitoring. They ran barium studies and abdominal x-rays and ultrasounds just as Boston had, and learned just as little.

These issues did not affect Sophie’s living too much. She had grown used to vomiting, as it happened multiple times an hour, all day, every day. The volumes were small, and while she was uncomfortable for a short time before throwing up, her smile returned within seconds afterwards. I let myself believe that she really was feeling good for all but a few seconds at a time, so I basically ignored her painful periods, figuring they would be short-lived. Jana, however, felt mortified and helpless every time she saw her daughter in pain, even more so because there was nothing anybody seemed to be able to do about it. Every retch from Sophie ate Jana up inside.

The team at Michigan tried one formula after another to control Sophie’s vomiting, each more foul-smelling than the last. None worked. Eventually, the team gave up and decided to return Sophie to breast milk. Not Jana's milk though; the doctors preferred donor breast milk that cost $4 an ounce. Insurance tried not to cover it, but finally got tired of our protests and paid us back for it nine months later.

As the staff’s confidence in us grew, they let me take Sophie out of the unit in her car and around the hospital for as long as we liked, unaccompanied. She was not the easiest toddler to push around, because I also had to push around a medical pole holding her feeding pump, monitor, IV nutrition, and other medication, each connected to Sophie by wires and tubes of different lengths.

Although we were unwieldy, we managed to regularly visit the University Hospital cafeteria, the indoor rainforest in the cardiovascular center, the toys in family waiting area for Mott general surgery, the bronze statues of boys and girls in the Taubman center, and other landmarks that Sophie liked. We looked out windows at snow and cars going by, we played peek-a-boo round corners, and Sophie had fits of excitement every time she saw a dog. "Daw! Daw! A daw!" I am sure the security camera footage we generated aroused suspicion on more than one occasion. Sophie was cheerful on these rides and would wave at strangers as she rode by, sometimes honking her little horn or brandishing her panda at them. The strangers invariably smiled back.

When Sophie came from Boston to Michigan, she came complete with a set of Boston-placed IV lines. One of these lines, called a broviac, went directly into her heart. The particular kind of broviac line that Boston had placed in Sophie wasn't commonly used at Michigan, which meant that when she pulled on it and it broke, there were no Sophie-compatible broviac repair kits in stock at Michigan.

Michigan’s hospitals treat around 45,000 patients a year, so their purchasing operation is both large and bureaucratic. They weren't about to order a new kind of IV line just because one kid needed a replacement. So I decided to just order the $80 repair kit from Cook Medical myself.

“Hi. My daughter has one of your broviac catheters implanted, and it just broke. Can I order a repair kit with rush delivery?”

“The patient is your daughter?”

“Yes”

“Are you a registered clinician?”

“Er, no. I’m a dad.”

“Sir, we only sell products to medical professionals. Where is your daughter staying?”

“Mott Children’s Hospital at the University of Michigan. They said it could take weeks to arrange officially.”

“I’m sorry, you’ll have to discuss that with your hospital’s purchasing office.”

Why could I not order the repair kit? What the hell would I do with it other than give it to Sophie’s doctor?

Jana and I hit on the idea of just having one of Sophie’s cardiologists order it, so long as we could convince her we were good for the money. It was pretty unusual and a bit awkward, as both money and rule breaking were usually taboo subjects in doctor-patient interactions. That would have been fine had Carly been around - we saw her as equal part friend and doctor - but she was away. At rounds the next day, however, Dr Goldberg the attending cardiologist told us she had no problem giving it a go. Having someone’s daughter under your medical care was pretty good leverage for an $80 loan. I again called Cook Medical, posing as Dr Goldberg's secretary. My plan was to just hand over the phone as soon as they asked to speak with a doctor for verification and payment. So Dr Goldberg stood next to me, medical license in hand.

“This is Rob Salmond calling on behalf of Dr Caren Goldberg. We have an urgent order for a six French broviac repair kit.”

I tried to sound authoritative and secretarial at the same time. Whatever I actually sounded like, it worked. Cook didn’t give me any hassle at all. About anything. They didn't even blink at the unusual shipping address or the Rob Salmond personal credit card I hurriedly produced when I realized what was about to happen. They didn’t ask to talk to Dr Goldberg at all. I could have been anybody, ordering up broviac repair kits for all kinds of nefarious purposes, and all of a sudden they didn’t care. I was the secretary of someone who called themselves Doctor!

The repair kit arrived, and the line was fixed, within 24 hours.

Three weeks later, Sophie broke her newly repaired broviac again. "Dr Goldberg’s secretary" immediately ordered two more from Cook.

For the next two long months through the holiday season and into the new year, Sophie was well enough to be happy but not well enough to go home. Her medical status took two steps forward and two steps back repeatedly. Her vomiting continued to confuse all and sundry. And her blood pressures remained a bit too high for everybody's liking. We watched on as parents pleaded with the staff to let little Johnny go home for Christmas, knowing that kind of pleading was futile for Sophie. We held a little Christmas celebration in the hospital instead. It was a muted celebration, though, not least because after every couple of parcels that Sophie opened she would need to throw up.

After Christmas, the doctors tries to deal with Sohie's blood pressures, which were getting dangerous again. Once more cardiologists from Michigan and Boston didn't agree on a plan, some people wanting to treat her with more drugs, others wanting a surgical intervention. After playing amateur referee again, we sent Sophie back to the cath lab to get one of her arteries - which may have become scarred up and narrowed after an earlier sugery - widened with a balloon, and to put in some scaffolding called a stent to stop in narrowing again later.

After the cath operation, the blood pressure in Sophie’s lungs dropped substantially. It was still higher than normal, but it was low enough for us to start talking about going home. Her vomiting had also improved a little with the introduction of donor breast milk. She still vomited a lot, but we were now able to pump the milk into her stomach in short spurts rather than as a continuous drip feed, which was a positive sign.

As Sophie’s condition improved and she had more energy, she demanded more and more trips outside her room. I took to scheduling her rides around the hospital for just before her bedtime, so we could roam the corridors after the day clinics had closed. Her medications had dropped off to the point where I could tie everything she needed onto her toy car, meaning no awkward pole for me to drag around as well. This allowed us to run at high speeds speed down the long empty hospital walkways. More than one straggling patient or early-bird janitor was startled as they rounded a corner to see a little girl and her dad bearing down on them, both wearing maniacal grins, the girl in a plastic toy car with medical wires and pipes and machines spilling out the sides.

*


Rob Salmond
Sophie is home
Today, after 115 nights in hospital, Sophie came home. It is hard to express how excited we are by that, or how thankful we are to so many people who have helped her get to this point.

In October, Sophie was a girl with a healthy appetite, fine blood pressures, and a happy, smiley attitude, but with a malformed heart that was slowly failing her, and blood oxygen levels becoming more dangerous day by day.

After her surgeries at Boston and further interventions at Michigan, her heart’s anatomy is completely changed, and now closely resembles yours. Her heart’s function is good, and her body’s oxygenation levels are approximately normal. While her recovery has been far from straightforward, with her eating, blood pressures, and drug addictions each having issues to resolve, we are now at a point where her eating and blood pressures are good but not perfect, we’re making progress on weaning the drugs, and her attitude towards life is outstanding.

Sophie has had access to some of the finest care in the world, without which she would have probably still survived until now, but would have had a substantially hazier future ahead of her. We have developed a benevolent Stockholm syndrome towards the nursing staff we encountered and worked with. We will try to recreate the vibrant atmosphere of countless smiles and unconditional love that the nursing staff created for Sophie and for all their patients. We will no doubt fall short. After all, there are only two of us!

We also want to sincerely thank all of you for helping keep our parental spirits high, and for sending your love to Sophie. You have helped us all immensely, and we will always remember and appreciate your kindness.

We won’t have a large celebration straight away (we don’t like jinxing things). But those of you in Ann Arbor should tentatively circle Sunday February 21 for Sophie’s combined welcome home and birthday party!

There will, undoubtedly, be more medical challenges ahead for Sophie. But that is for another day. For now, please join us in toasting the happy homecoming of our little girl.

- Jana and Rob
January 30, 2010 at 9:18pm

On January 30th, Sophie came home.

She came with baggage, of course. A naso-gastric tube was permanently inserted down her nose and taped to her face. When Sophie pulled it out, which was frequently, Jana and I had to gang-tackle her to insert another tube and tape it back on to her face. The tube connected to a feeding pump, which we took everywhere. For 90 minutes out of every three hours during the day, and all night long, it was slowly pumping fortified donor milk into her stomach. During those times, Sophie couldn't be more than four feet from the pump. She also had an expanded regimen of medications, including a large bottle of the blood pressure lowering medication sildenafil, better known as Viagra. In her first year Sophie had acquired a dildo and some viagra, qualifying her as both an honorary cougar and an honorary frisky old guy.

All these medications needed daily measuring, dosing, and delivery. The feeding pump needed constant repositioning and monitoring. Milk needed to be changed, feeding bags washed, and appointments with doctors and physical therapists scheduled. In one sense, none of that really mattered, because our little girl was home, shuffling around after the cat and filling our house with shrieks of childish laughter. But in another, we had just gone from taking a shared beating at the hospital to taking one all by ourselves at home.

During Michigan’s long, slow climb out of winter towards spring, we tried as best we could to bring a sense of normality to our lives. Jana and I had returned to the classroom at the University, but we were never in the classroom at the same time, because we could not find daycare for Sophie. The best we could do was to hire one of Sophie’s favorite nursing tech assistants from Mott for two mornings a week. The rest of the time, we traded shifts, running roundabout, unnecessary errands to get Sophie out of the house on miserable days. We visited parks and pushed Sophie in the swings, both in snow and after the thaw. One three year old ran immediately to her Mom when she saw Sophie came to one of the playgrounds:

“Mom! Why does that girl have a hose in her face?”

Later in February, once we had been home long enough to hope it was real, we threw Sophie a birthday party. Our house was overrun with friends from political science, their kids, and some of the nursing staff from Mott hospital. As with most first birthday parties, it was more for the parents than the kid. The mood was both celebration and relief.

By the end of April, all the undergrads were gone, and Jana and I could finally devote our non-Sophie time to our academic research. We had leave from teaching for the upcoming fall semester to concentrate on research, as we had earned a pre-tenure sabbatical leave with which to polish our portfolios. Like many junior faculty, we planned to use this as an opportunity to travel, to interact with a different set of scholars and make absolutely sure we would not be roped into administrative duty during our precious research time. Jana had won a fellowship at Stanford University’s Center for International Security and Cooperation, and the political science department there had arranged a Visiting Scholar position for me as well. We would be there, close to Jana’s family and away from Midwestern weather, ensconced in the academic utopia of Stanford’s lush grounds until the end of the year.

We felt excited about what lay ahead. It was a nice change.