Thursday, November 13th. Fourth Day, Second Round, High Does Antibodies

A Week that has left me Weak.

I can’t even begin to explain how hard this week has been. Liam turned 4 ½ on Thursday. He spent the day undergoing the fourth day in a row of a very intense antibody treatment intended to give him life but left him limp and with little life in him. Like the last round, he spent the week curled up in a fetal position; whining “Mommy – I want you” if I stepped away from him; clutching me with both hands wrapped around my neck when going through the super painful part of the treatment and commanding me not to move; not talking except to cry “I don’t want Ella close to me”; gingerly sliding him into and out of a cab on the way to/from the Upper East Side; not eating…at all…; throwing up green, vile smelling bile with such force it flew out his nose; refusing to take yet another “pillow” (pill) for either pain, prevention of nausea, antibiotics left over from the infection that wasn’t but that we were still taking precautions to treat just to be certain, or to prevent a fever…but always in the end obliging and swallowing up to two pills at a time; and crying in pain and discomfort beginning Monday afternoon. It has been heart-wrenching. And on Monday we had a bit of a scare when Liam’s body reacted on day one to the onset of a high dose of antibodies coursing through his body combined with the narcotics intended to shield the pain with a low blood oxygen rate and extremely high heart rate. It was one of those hand-shaking-uncontrollably moments when you and a nurse realize something is very wrong, hear your voice say to the nurse you know so well, “Cat? Cat! Cat? Now, Cat, Now! Cat, Now!” as you watch her quickly go into emergency mode as she assembles an oxygen mask and places it over Liam’s limp head being cradled in the crux of my arm with his equally limp body sprawled across me, and seeing her press the red emergency button that just two weeks ago Liam was mischievously threatening to push to see what would happen. Watching a swarm of doctors, nurse practioners and nurses descend into the small treatment room on an unresponsive Liam yelling things like “how much Narcan (a drug used to reverse the effects of narcotics) did he get and when,” “he has a pulse!” and “Breathe, Liam, Breathe! Breathe, Liam, Breathe!” Watching a wet spot spread across his jeans as his body lost control. Noticing the “crash cart” used only in emergencies positioned outside treatment room nine where we were located. Watching him throw up and smelling the pretzels he had eaten handfuls of a few hours earlier in the contents violently expelled from his stomach. Calling Larry with a trembling voice to say, “Get here now!” but not being to explain what was happening because the vice grip on my throat prevented me from saying anything else. And gratefully seeing the numbers on the monitors returning to normal ranges. I don’t want to do that again.
On Thursday, November 13th, I had a conversation with a mother whose son was being treated next door in room number eight. She was from Barcelona and was in the tiny room that was separated from ours by a wall that went ¾ of the way up with a curtain as a door. I had heard her talking during the week and noticed a certain level of stress in her voice. I know the sound. I recognized it as one I’ve heard in my own voice, as hard as I try to hide it. She was in the room with her son who was undergoing antibody treatment and was sleeping off the pain of the treatment courtesy of “comfy” medicine, and her younger son who was totally cute and completely oblivious as to the significance of his surroundings. I said hi and she embarrassingly looked at me and said something in Spanish that indicated she spoke no English. We tried anyway to communicate. It was her son’s second round of antibodies. He was seven. He was diagnosed in February 2008, exactly a year after Liam. He had undergone bone marrow transplant. They flew back and forth to Barcelona between treatments. Her younger son 2. She was staying at the Ronald McDonald House, where so many families who come to Memorial Sloan-Kettering from out of town and out of the country stay. I gave her my e-mail address and told her to write to me when she was next coming back so that I could help her any way I can. And then something that rarely happens to me happened. I looked at her and felt tears welling up in my eyes. She saw and we hugged and cried. She talked. I had no idea what she was saying but it didn’t matter. I wanted to take her pain away. I didn’t want to meet her under these circumstances. I wanted the pain for both of us to go away.

We’re now in New Jersey. It’s early Saturday morning or late Friday night depending on how you look at a clock. Liam hasn’t walked more than five steps since Monday afternoon and hasn’t eaten since Monday, but he did smile twice tonight. We are so eager to see him emerge from his stupor. We want him back. We need him back. We miss our baby boy. Ella misses her brother. We can’t wait to laugh with him and watch him be a little boy. Yet we are so grateful to have the opportunity to receive this treatment which is a few streets away from us. We could be flying here from Spain instead of taking a 10 minute cab ride. And for that, we are so very fortunate.

A bizarre week.

Even when I tell you, I’m not sure you’ll believe me.
What happened October 28 – October 31

A conversation with Liam on Saturday, November 1st around 3 p.m.

“Mommy, what are those lines on your forehead?”
“Oh, honey, they’re from worrying about you and Ella.”
“Why do you worry about me and Ella?”
“Because I love you and Ella and will always worry about you two, even when you have your own children.”
“Mommy, why don’t you get some butt-tox for your lines?”

When I walked in the door from work on Tuesday, the 10th day in our 21 day hospital break, I was greeted with squeals from Liam and Ella and the news that Liam threw up part of his dinner (the turkey meat balls he used to love but hasn’t eaten in months after his taste buds changed from chemo) but continued eating after he threw up. OK. That’s not normal. Ella is our thrower upper, not Liam. In fact, Ella had thrown up on Monday night and just that morning before she went to school after choking on some post-nasal drip in her throat. (She can throw up just with the mention of the word, quite a talent.) And then Liam’s squeals quickly changed to whines, “Mommy, I want you to hold me.” “Mommy, Hold me…just hold me.” Something was off, but he looked fine and I wanted to believe it was nothing. At around 7:45, Daddy felt his head and thought it felt warm. Liam was uncharacteristically out of gas. Out came the thermometer and from there, with a temperature of 101.5, an adventure full of many plot twists and turns began. For Liam, a fever is anything over 100.4 and earns an instant trip to the hospital. Because he has a medical port connected to a central line, the concern is that a fever could be an indication of a line infection which can come on very suddenly and be life threatening. You have no choice but to take a fever seriously, no matter what time of day or night.

I put the numbing cream on his medical port knowing it was going to need to be accessed. As soon as Liam saw the tube of cream, he started to cry. There’s only one reason that tube of cream comes out and he was not happy. I felt like I was breaking our deal of three weeks of no hospital time, except for a blood draw to test to see if he can continue with a second round of antibodies. And as soon as Ella saw me putting cream on her brother’s “button,” she started to cry and in a shaky voice kept saying, “Don’t leave, Mommy. I…don’t…want…you…to…go…to…the…hospital.”

We went to urgent care with Liam in his soft, zip-up footed jammies wrapped in his comforter and snuggled in the stroller. We anticipated a quick trip for antibiotics so we travelled light – puppies, pillow, super soft yellow blankie, movie player, a collection of movies and a cup with water. The ride to the hospital was quick and as we were walking down the long hallway on the ground floor that snakes through the belly of the hospital over to urgent care, we passed Liam’s favorite room: the steam pipe room. The doors were open, a rare sight, and a group of workers were walking in and out with pipe, tools and other important looking pieces of equipment. We stopped and I knelt down in front of the stroller to answer Liam’s questions. “What’s that pipe for, Mommy?” (Luckily the pipes were labeled with arrows indicating the flow of steam and a few descriptive words allowing me to actually explain what each pipe was for which elevated me to rock star status in my son’s eyes.) One of the workers with the word “Supervisor” embroidered on his shirt stopped to say hello. Liam eagerly but not with all of his typical energy told him that the pipe room is “awesome!” The man was dripping with sweat and his shirt was soaked. He explained to Liam that a pipe was broken and that the pipes in the room all carried steam that brought heat to the 10 buildings that were part of the hospital system. Liam was in nirvana. He asked question after question. He wanted to know how the man could get so hot that his shirt could be soaked. He wanted to know how steam could heat a building and I lamely tried to explain at a level he would understand and that would make sense. After watching the activity for as long as he could, Liam finally looked up at me and said, “I’m ready.” So off we were to urgent care. The waiting room was packed and our stroller was the only one in the waiting room. There were stretchers lining the hallway filled with people in various states of discomfort, most of them with skin with a yellowish tinge that is often seen in cancer patients. I immediately whisked him over to the check in area and turned his stroller around so that his back was turned on the sea of waiting patients and their worried-looking families and friends. We checked in and very shortly after were taken into the triage room. His temperature was taken. It was 104. Not good. We went back to room 5 which is one of the isolation rooms, not because Liam was a risk to other patients but because it was the only open room. We waited for over an hour in the isolation room before anything happened and then went through the normal routine of questions; wrestling with and restraining him in order to access his medical port over blood curdling screams of “MOMMY – DON’T LET THEM TOUCH ME!!! MOMMY – NOOOO! NOOOO! NOOOO!!!; a visit from the pediatric fellow who asked many of the same questions; a Tylenol pill for my pill-popping baby; and finally a dose of antibiotics but not before having to track down a “pee pee cup” (urinal) which Liam always reverts to when having to pee when he’s in the hospital. I’m convinced he insists on using a urinal because he likes them. We got the antibiotics and during the course of the infusion Liam bolted upright and said in a panicked voice, “Mommy – I’m going to throw up! I’m going to throw up! Get me a throw up bucket quickly!” Of course there wasn’t one in the room. In pediatric rooms, there’s a ready supply of them and you can almost always find one within an arm’s reach. So, I grabbed the trash can, pulled the bag out, grabbed an empty bag underneath and got it to him just in time. And between sessions, I ran out to the nurse’s station to ask for someone to grab a bucket which is the same shape and size of dishwashing pan in a lovely shade of harvest gold. No bucket came. He finally fell asleep. The antibiotics finished, his temperature was gone, but because it had been so high the fellow wanted him to get an extra hour of IV fluids. OK. Fine. That meant we wouldn’t be leaving until around 2 a.m. I hope I can find a cab on York Avenue at that hour. After the additional fluids, the nurse came in to begin the process of getting us out which would include deaccessing his medical port, never an easy thing. Just to be sure everything was OK, I asked her to take Liam’s temperature. It was 104. Crud. With a temperature that high, I had a feeling we wouldn’t be going home. The nurse called the fellow who decided she wanted us to stay. Unfortunately there were no beds available on the pediatric floor, so we had to spend the night in urgent care with the directive to go straight to the day hospital when it opened. Liam wanted to know what was going on. I told him his temperature came back and so we needed to stay a little longer. He wasn’t happy but was too tired to protest. At this point I was happy I had decided to bring along Liam’s comforter which was now serving as our blanket as we huddled together on the urgent care stretcher. Liam’s fevers caused him chills and then sweating so badly I’d either need to be rubbing his body all over to warm it up or stripping off his pajamas and fanning him when his fever was breaking. Finally it was 7 a.m. and we could go upstairs to a place we were more comfortable with and that was better prepared and equipped for young patients. We waited, and waited and waited for the OK to leave urgent care and go upstairs. After an hour of waiting, a new nurse came in to tell us she was waiting to give a report on our situation to a nurse upstairs on the pediatric floor before we could go. Liam wanted to leave. He’d had enough of urgent care. And then there was more throwing up into a plastic garbage bag. And finally, after Liam and I were ready to blow a fuse, we were told we could go upstairs to the pediatric day hospital…after one last set of vitals. His temperature was back up but not 104 again. After popping a Tylenol, we headed upstairs.

Wednesday morning and we’re in the day hospital, also known as the clinic although to me there’s nothing “clinic like” about the 9th floor. Dani, one of Liam’s favorite nurses and who I always feel comfortable with, was our nurse. We were in a bed in the room off the IV room that is divided by a curtain and usually reserved as a holding area for surgery patients. The second the stroller turned into the IV room, Liam immediately wanted to know what we were doing there. He associates the IV room with one of two things: a finger stick which he despises or having his medical port which he despises even more. When we walked by the IV room treatment bays and the finger stick area, he relaxed. And then the waiting started. First we had to see Ester to be examined. “Has he been sick?” “No.” “Has he been around anyone who has been sick?” “Ester! He’s in preschool…of course he has! And, Ella has a cold but it hasn’t come with any temperature as far as I can tell.” “Has he been complaining about anything?” “No.” His mouth, eyes, ears and nose were examined and all checked out as clean. And then back to the bed to wait and hope no more fever. Liam was exhausted and didn’t want to get out of the stroller. I have always suspected that Liam’s stroller is his safe zone where he knows nothing will happen and out of respect, I have listened and never allowed anything to happen to him when he’s in his safe zone. It was late morning and no fever. Early afternoon and no fever. At some point during the day Liam woke up and said, “Mommy – I’m wet.” After receiving so much IV fluids, his little body overfloweth but he was too tired to realize he needed to go. Unfortunately because we thought we were only making a “quick trip” to the hospital, we didn’t have our normal arsenal of supplies. I told Liam I could get him a pair of jammies from Teres in Child Life. He immediately burst into tears. He didn’t want to wear hospital jammies, he wanted to wear his dinosaur jammies from home. He wanted Daddy to bring those jammies right now and he wanted Daddy there right now. We took off his footed, one-piece jammies so that he could take off his underwear, and then put the wet jammies that I lined with paper towels back on so that he couldn’t feel the wetness. He went back to sleep in the stroller and I fell asleep sitting upright in a chair. And then Dani came in to break the news. Liam’s blood culture taken when we arrived at urgent care tested positive for bacteria, the same type of bacteria he tested positive for in September. Ahh, that explains the temperature. But oh no, I know what a positive culture means….an inpatient stay. We were being admitted. Liam was sleeping. I started to cry. He was so looking forward to Halloween. He was having a good time at school and making great friends. He was enjoying being a little boy and far away from the hospital. I cried for him. I cried because I was tired. I cried out of frustration. I cried for not having any control. But then I accepted and started thinking about what I needed to do to get him out of the hospital in time for Halloween. I asked if we could go home on IV antibiotics, something I learned how to do during his last visit. I felt like I was being scolded for suggesting something so risky when we didn’t even know what kind of bacteria it was. And then I was reminded that if it was gram negative rods, it could be sepsis which is extremely serious. OK. Fine. But I’m still going to hold onto the goal of getting him out in time for Halloween. What the heck…why not? I always like to have a goal to shoot for. One of the doctors from Liam’s team came in to check on us and discuss her recommendation. Her suggestion was to remove his central line as quickly as possible and have it replaced with a temporary line. The explanation was that the bacteria was looking like the same one he tested positive for in early September which would indicate that even with a two-week course of powerful Vancomycin antibiotics, the bacteria had colonized in his port which it is apt to do and that it would keep regrowing unless it was removed. It would also mean we’d need to treat the infection through IV antibiotics and a temporary port which would mean the return of dreaded dressing changes, an increased risk of infection with tubes hanging down his chest and a new incision on the “clean”, incision-free side of his chest. OK. OK. All of this stuff is nothing if it means avoiding a fight against sepsis. I remembered hearing from my dear friend Lee how scary it was when Bob was battling sepsis. I didn’t know many of the details other than it was really bad. Dr. Kayton, one of the incredibly talented surgeons in the stable of incredibly talented surgeons in the pediatric department and one of the most empathetic physicians I’ve met came to visit. We discussed the positive blood culture, the need to take Liam’s port out and then the need to put in a temporary port. To Dr. Kayton, this was no big deal. He kept saying, “This is something we can fix.” To me, a mother trying to protect her son from from a different perspective, it was. I just wanted to make absolutely sure we needed to do this. Was there a chance that even though the bacteria was looking like the same he tested positive for six or so weeks ago, could it be possible it was a new bout with this bacteria and not a situation of the old bacteria coming back? If there was even a chance, I wanted to make certain we looked into that possibility. Where could he have been exposed to bacteria? Ridiculous question, I know, since bacteria are everywhere. But how could he have gone so long without any bacterial infections, more than 20 months, and then have two within a six week period? And how did he go from feeling great on Monday to awful with a high fever and higher white blood cell count on Tuesday? Monday afternoon he was in a class where he planted seeds. And when he came home he even had some dirt around his nose after being particularly exuberant. Could it be possible he picked up the type of bacteria he tested positive for which is common in dirt from the potting soil? If it was at all possible, I wanted to chase down that theory, even if I was being told it was highly unlikely. I kept trying to sum up my limited knowledge of the way bacteria can enter a body to try and come up with some explanation while also asking every few hours if anything had changed in the tests and if the super scary gram negative rods showed up. Liam took cat naps in the stroller. Between his naps, he kept asking when we were going home. I could only tell him, “as soon as we can, honey, as soon as we can.” While we waited to see if we were possibly going to be released with IV antibiotics, I could hear activity in the bed next to us. It wasn’t the normal activity of pre-surgery, which is usually what the two beds in the room were reserved. Voices sounded worried. “Did he eat anything?” “Ben, Ben, stop doing that Ben.” “Did anything different happen?” I could hear a young child who sounded about Liam’s age crying a very bothered cry. A yamika kept flying to the floor on our side of the room and his mother was yelling, “Ben – Your yamika! Ben – Not your yamika.” I would pick it up and blindly hand it around the curtain to Ben’s mother who would take it from me. I could hear people coming in and out. The questions weren’t the questions you normally hear. I could hear doctors from anesthesia coming in to check on Ben. I could hear them saying they used the same medicine they always use. I heard a nurse talk to a mother about how to use an Epi pen, something I certainly hadn’t heard before. I heard talk of an allergic reaction. The mother was asked the same question over and over by a litany of people, “did he eat or do anything different than his normal routine?” The mother sounded scared, frustrated, tired, perplexed, and emphatic that no, her son hadn’t done anything differently. It was sounding a bit out of control. They kept talking about his face…his face. Ben bit his mother out of pure agitation. He clearly wasn’t happy. All of the commotion woke Liam up who alternated between looking at me to get confirmation that the child he heard crying less than an arm length away from him was OK and watching Sponge Bob Square Pants, an activity reserved only for the hospital. Finally after an infusion of Benadryl, Ben fell asleep. He mother sounded relieved. A nurse brought her a video on how to use an Epi pen and talked with her about how to use it. “Where do you put it?” “Usually in the leg.” And then around 3 p.m. came the icing on the cake which sealed our fate…his temperature shot back up to 104. His infection was still out of control. The wheels for an inpatient stay which we were trying so hard to avoid were rolling forward. Discussions were taking place about taking Liam’s central line out. I knew the danger and wanted it to be gone, but also wanted to make sure we were doing the right thing. And any hope of leaving the hospital that day were now completely dashed. Dr. Kayton came back to visit. Liam was sleeping. He showed me what the temporary port looked like and my stomach churned. I asked questions. He answered them all calmly. The temporary line looked ugly and obtrusive and I hated that it would mean more scars for Liam, scars on the “scar free” side of his body. Dr. Kayton left and I sat alone feeling so disappointed for Liam and trying to come to grips with what was about to happen. A voice said, “Do you want to see what a temporary line looks like?” It was Ben’s mother. I walked around the curtain. Ben was sleeping a deep drug-induced sleep on his side. His mother stood up from a chair where she was sitting holding the Epi pen instructional video. She was younger than me but seemed older. She was wearing a skirt, something I would never do because of the inconvenience but she did for religious reasons, and had her long hair secured by a net to prevent it from flowing freely. She pulled her sleeping son’s shirt up to show me the line. It wasn’t as bad as the first one Liam had in, but it still made my stomach lurch. A flood of memories of changing the dressing for Liam’s first line came flooding in. The tears. The fighting. The restraining. The fear we weren’t being sanitary enough. The fear both Larry and I lived with that we weren’t doing it right and potentially causing irreparable damage. The frustration for Liam not being able to take a bath or shower. Having to be super careful that Ella didn’t see the tubes and yank on them out of curiosity. She told me it really wasn’t that bad. But it was still not what I wanted.

Liam woke up and wanted to know when we were going. I broke the news to him that he had a temperature. Even Liam knew a fever wasn’t good. “Oh no, Mommy, not a temperature. That’s not good.” He didn’t say much when I told him that we were going to have to spend the night. I explained that there were germs hanging out on his button, a special kind of germ called bacteria. He kept asking over and over why germs liked his button and how they could build houses on his button. Daddy finally arrived for moral and emotional support as well as fresh jammies. And then we were off to room 25B, the same room in the same bed we stayed in for several stays including our neutropenia stay this summer and in the same room we were in during our last stay. But this time we were going to be sleeping in the bed the noisy Chinese family we had so many issues with during our last stay slept.

We settled in for a quick stay. Our neighbors who were staying on the side of the room we checked out of on September 11 included a mother, grandmother and baby. A giant yellow cage-like crib replaced the hospital bed that’s normally in the room. The cage cribs are really frightening looking to me. Liam checked out the goodies Daddy brought. We discussed with the inpatient team the game plan. I started the process of explaining to Liam what was going to happen tomorrow. This was a totally unexpected stay and I could tell he was still trying to process it. As is Liam’s style, he was being a good sport something I was so proud of but also loathed that he had to be a good sport. Dr. Kayton stopped in to check on us and give us a surgery time. It was the first time Larry had a chance to talk with him. I heard him repeating the same information he went over with me and I could also see Liam getting agitated. The one thing I didn’t remember hearing is that it would be at least a 45 minute procedure. I walked with Dr. Kayton down the hall as he was leaving and lamented the fact one more how badly I felt about having to put Liam through this experience. He looked at me and said in a very measured voice with a touch of bewilderment, “It seems like you’re particularly attached to this port?” And I again found myself explaining that Liam’s health was my number one priority, as I knew it was for everyone at the hospital, but a close second was his mental health and a temporary line was something I just so wished he didn’t need to go through.
Daddy left to go home to be with Ella but not before making a giant tissue paper pumpkin for Liam in the tiny play room. Liam squeezed puddles of glue on construction paper and then covered them with blue sparkles that went everywhere while Daddy worked on the pumpkin. I gingerly talked with Liam about getting his button out the next day and explaining the concept of the temporary port on the opposite side of his chest. I didn’t want him to be scared or freak when he woke up and felt something in a place he’s not used to feeling things. I checked on the status of the blood culture taken the night before which, so far, was not showing gram negative rods. I was told that if he did have gram negative rods, they would have shown up by now. It was a huge sense of relief. A sepsis infection was something I wanted to stay as far away from as possible. Liam went to sleep with my arms wrapped around him in the bed with the blue plastic mattress neither of us liked. Throughout the night as Liam’s vital signs were taken, I kept waiting to hear he had another fever…but he stayed fever free which gave me great relief. Maybe the combination of antibiotics was working. Just before the night nurse left at 7 in the morning, she came in with a small pouch of medicine that needed to go into his IV. She volunteered that his coagulants were off slightly and he was going to get a dose of vitamin K. I joked with the nurse that something on this side can be off ever so slightly and the immediate reaction is to throw something at it. But vitamin K sounded innocent enough so I wasn’t going to fight or question it. Clotting is good thing to have during surgery.

In the morning, Courtney, one of our favorite nurses greeted us. She was surprised to see us and while happy, disappointed we were back on the floor. We talked a bit while she fiddled with the IV infusions. She hooked up the vitamin K and as she was finishing, Liam announced he had to go stinky. He didn’t have socks on so I carried him into the bathroom and had him first stand while balancing on the toilet seat while I took off his jammies and then lifted him to place him on the toilet seat. He asked me to leave so he could go stinky alone and close the door…all the way…behind me. Courtney and I chatted while Liam did his business. I checked on him – “Everything OK?” “Yes, Mommy.” “Are you finished?” “Not yet!” – and was reminded to close the door all the way. All of the sudden Liam started saying his tummy hurt. I popped my head in and said it probably hurt because he hadn’t eaten since Tuesday night. He told me it really hurt. And then he said, “I’m going to throw up!” I opened the door and let him throw up into the empty trash can. He finished throwing up yellow bile and I wiped his mouth off. I asked if he was finished and he told me no so I left the bathroom. Courtney and I looked at each other with puzzled looks wondering why he had thrown up. Liam started saying, “My cheeks feel funny. Mommy, my cheeks feel funny. They feel really funny.” What? His cheeks feel funny? What in the world? I opened the bathroom door, Liam lifted his head to look at me. His face was completely distorted and bloated to the point I barely recognized him. His lips were so swollen they looked like they were going to explode. I turned quickly turned while crouched in front of Liam, looked at Courtney and said, “he’s having an allergic reaction!” She looked at Liam and ran out of the room. He started to throw up again. As soon as he was finished throwing up I lifted him off the toilet and wiped him while holding him and carried him while pulling the IV pole over the big bump at the bathroom door to his bed. “Mommy – My pace peels punny….Mommy…My pace peels punny.” His lips were so big he was having a hard time talking. They were stretched so much that all color was gone. His ears were so swollen that the skin looked almost translucent. His eyes were slits. I held him in my arms while he alternated between talking about how weird he felt and screaming in pain that his stomach hurt. The level of pain he was in was greater than antibody pain. I called Larry quickly at home to tell him Liam was having an allergic reaction and I needed him there now. Residents and nurses came running into the room. Orders were barked to get him Benadryl. A dose was pushed directly into the line to get it in as fast as possible. Steroids also went into the line. Oxygen was brought over and a medicine to keep airway passages open was added. Liam started complaining about breathing being more difficult. I felt myself levitating over the scene looking down at what was unfolding. It didn’t seem possible. He had received vitamin K before. He took a pill of it the last time he was inpatient. I surveyed the room of people. I asked where the attending doctor was and was assured she had been paged and was on the way. I wanted her there as soon as possible. She didn’t arrive. Liam didn’t look better. His screams were more intense. An alarm on the machine that registers heart rate and oxygen saturation levels sounded. A nurse came over to try to fix it which meant fiddling with a piece of tape connected to a sensor that wraps around either a finger or toe to monitor the amount of oxygen in his blood which indicates if he’s breathing OK. The machine beeped five quick beeps in succession, paused, and then beeped again. An order for the Epi pen was issued. Courtney and another nurse were over at the counter by the sink fidgeting with something. I could hear them trying to talk quietly but could hear what they were saying. “It went off?” “Yes!” “In your hand?” “Yes!” “Are you OK?” I saw Courtney run out of the room. “Where’s the attending?” “Where’s the attending?” There were five residents standing in front of me staring at Liam. None of them moved. None of them said a word. The doctor working directly with Liam wore the same white coat as the residents so I couldn’t tell if she was a resident or a fellow which is the next level up on the chain of command. She kept telling me in an irritated and exasperated voice that the attending was on the way and had been paged. “Page her again,” I said. She didn’t do anything. “Send someone else to get her! None of the residents are doing anything…send one of them to track her down. I want her here NOW!” One of the doctors left. Liam was screaming at the top of his lungs. His face was swelling even more. His upper lip was so large it touched his nose. His lower lip jutted out past his chin completely changing the landscape of his face. He didn’t look like my child any more. He was screaming in pain. The residents just stood there. Courtney came back into the room with another Epi pen. The pen was taken out of the box. Liam saw it and panicked even more. “NO…NO…NO…NO!!!!” “Liam – We HAVE to! I’m sorry, honey, but we HAVE TO!” I pulled on the sleeve of his jammies to get his arm free. He yelled at me and fought as hard as he could. “NO! NO! NO!” I got his arm out. Someone said that normally they’re administered in a leg, not arm. “Can it be done in the arm?” No one answered the question. It would be impossible for me to get his leg out of his jammies while trying to restrain his flailing arms and legs. I could hear Courtney giving the doctor instructions on how to use an Epi pen over Liam’s screams. She had never done one before. “Make sure you hold it in for at least 10 seconds.” “Where’s the attending?!?” I was now shouting over and over. I was scared. A nurse was trying a different machine to monitor his heart rate and blood oxygen levels. It also wasn’t working. And for a brief moment I allowed myself to think the unthinkable about what was happening in front of me. Liam screamed in agony at the top of his lungs. I held him tight. The Epi injection was given. It made a strange sound like the top of a super carbonated soda bottle shooting off. Liam screamed a new scream. It hurt. He was pissed. “WHERE’S THE ATTENDING!” “WHERE IS THE ATTENDING?” More than 20 minutes had gone by and no attending doctor. Larry kept calling and I would answer the phone and talk if I could but more frequently would just let him hear what was going on in the room with his precious baby boy. Liam’s screams about his tummy hurting were nonstop. He was in agony. “WHERE IS THE ATTENDING?” “IF SHE DOESN’T COME NOW I’M GETTING UP AND CARRYING HIM TO HER.” The doctor kept assuring me she had been paged. She had been paged. She didn’t come. I stood up from the bed with Liam in my arms. “GET HER HERE RIGHT NOW OR ELSE I’M WALKING OUT OF THIS ROOM TO FIND HER WITH LIAM!” Liam’s screams of pain continued. “WHERE IS THE ATTENDING WHERE IS THE ATTENDING WHERE IS THE ATTENDING!!!” A second Epi pen injection was being discussed which made me wary. I’m certainly no expert on Epinephrine, but a second injection within an hour was something I had never heard of. I was even more anxious than ever for the attending with her experience to be a part of the decision making process. A doctor rushed in who I recognized and who recognized me. She was the one with the friendly face who looked like someone I would be friends with if we met under different circumstances. Our eyes locked and I felt like she communicated in one look, “Oh Hi! It’s you…I know you…and Liam…what are you doing in here…what’s going on?” Our conversation was quick and urgent. “Where have you been?!?!” “I just got the page less than two minutes ago and ran here!” “This has been going on for a long time!” “I came as soon as I got the page!” “Make the pain go away…he’s in agony!” I really like this doctor and feel comfortable around her. We talked fast with each other but neither of us were angry, just trying to take care of Liam. I heard her make a request in a calm voice for some Morphine. Courtney ran from the room again. She wanted to know why his heart rate and pulse oxygen levels weren’t being monitored. The residents continued to stand in a wall of white coat silence. The doctor who had been dealing with us gave her explanation as to what was happening. Courtney came back into the room with the morphine and it was injected straight in the line. And finally, more than 35 minutes after the awful episode started, Liam got some relief. Within minutes, he fell asleep. The attending stayed focused on the situation. Liam’s face was still completely swollen but he was breathing well and his heart rate was down. I heard someone say that surgery had been called. I looked at the clock. His surgery time was quickly approaching. Then I heard that surgery was postponed. “Anesthesia won’t take the risk of putting him under when his throat was take him under these conditions.” I was crushed. If surgery was delayed until the next day, Halloween, he surely wouldn’t get out and would be celebrating the holiday he had been so looking forward to in the hospital. No. No. No. And then I looked up and there was Dr. Kramer. She had come to see what was going on and I was grateful to see her. I wanted to know what happened. Clearly it was a reaction to the vitamin K infusion. It’s very rare but one of the side effects was extreme abdominal pain. This is exactly why I wanted the attending in the room. My mother instinct told me the residents didn’t know that was one of the side effects so they let my son scream in pain and agony without relief for more than 30 minutes. Dr. Kramer left to return to the day hospital and start what I’m sure was going to be a long day seeing patients. Larry walked in which was a huge relief. We discussed with the attending doctor Liam’s situation, our concerns about rushing into surgery but also not wanting to take any risks, shared with her that Liam had been playing in dirt, he had a clean blood culture 10 days after he stopped taking antibiotics after his last bacterial infection, discussed his white blood cell count being back down to normal levels, and looked at how long it had been since he had a fever. There was a part of me that kept asking myself what I was doing…in light of the fact that it was the same bacteria and knowing how bacteria likes to cling to medical ports, it all seemed to make sense that this was a straight forward case. But I just couldn’t let go. She listened and then suggested that a consult with ID (infectious disease) would be prudent. Larry and I didn’t know that infectious disease could be called to consult on cases but we immediately welcomed the idea. In the interim, surgery was rescheduled for Friday at 12:30, the earliest they could accommodate us. She assured us that infectious disease would be back to us before the end of the day. We spent the rest of the day watching Liam like a hawk for any lingering effects. Liam kept asking us why his face blew up like a pumpkin. He wanted to understand what allergic reactions, a new term for him, were all about from what caused them to what happened to a body when it was having an allergic reaction. Later in the afternoon, one of the residents came to check on Liam. I am not proud to say that I felt like a mother lion not very willing to allow my child to be checked by a doctor who I was still angry with for waiting for what seemed like too long to me to get the attending in the room. She was not on my good list. Liam, though, seemed fine although still very puffy. He wanted to eat – a good thing – and spend time playing with the giant bottle of blue glitter in the “tiny playroom.” And most importantly, he had gone 24 hours without a fever…a very good thing. We were in the room and Courtney came in with some medicine to hang on his pole. It was Visteral…a medicine similar to Benadryl which make Liam sleep for hours at a time. It had been more than six hours since his allergic reaction and I didn’t understand why we were adding a new medication that would make him sleepy. I went to discuss with the resident who prescribed the medicine if it was really necessary considering it had been hours since his allergic reaction. It was the same resident I wasn’t happy with. The attending heard our conversation and said that Liam didn’t need it. There was a part of me that felt badly for the resident...she was in a losing situation with me because she lost my trust and confidence. I went back to the room and Fireman Tommy was there to visit his buddy Liam. The two of them were on their way to the playroom. Two women from infectious disease arrived. It was a fascinating conversation. Yes, the type of bacteria Liam tested positive for was the same kind he tested positive for on September 3rd. But, the type of bacteria is not one that causes high fevers like Liam had. It also was one that doesn’t typically colonize in a port. And it’s the same type of bacteria they were having contamination issues with and had even set up a task force to try to identify the source. They also reported that Liam’s second and third blood cultures were so far negative was another indicator to them that the first culture was a false positive. They felt the port was fine, it didn’t need to be removed and he should be taken off antibiotics and discharged. It took me a minute to understand what they were saying and the implications. Wait…let me get this straight…we probably haven’t needed to be here? And let me get this straight…if he hadn’t gone into anaphylactic shock from the vitamin K infusion he would have had a surgery he didn’t need to have? So, again, let me make sure I understand…he could have just been plain old sick just like a regular child? And then I made another realization…if this bacteria was the same one he tested positive for in September, then it was possible the scare we had and the two week course of antibiotics every six hours could have been avoided?? Really?? Oh goodness. OK…cue the mix of emotions. I wasn’t sure exactly how I felt…relieved that he didn’t need to have his port removed but frustrated that our three-week break had been interrupted. The resident caught up with the team in the hallway to get an update. I heard the team tell her the same things. I checked on Liam in the playroom with Fireman Tommy and all was good. I saw the attending sitting down near the reception desk reviewing patient cases with the pediatric fellow who was coming to relieve her for the night. I immediately recognized the fellow as one we knew and liked and who was always joking with Liam. The attending asked if I had seen the infectious disease team yet. I told her what they had told me and the resident who was standing close by confirmed my report. We discussed Liam’s discharge which would likely be on Friday just to make sure there were no lingering side effects from the vitamin K experience. While I was away Daddy cleaned up the tornado of toys that had swept through Liam’s small room and hung his Superman costume on the medical paraphernalia that serves as the headboard for the bed. We said good bye with a sense of relief of having dodged a bullet. A team of volunteers stopped by the room to decorate it with Halloween goodies. Liam was beyond thrilled and decorated every inch of wall and even hung a huge banner of carved pumpkins on the curtain that separated us from our neighbors. He jumped from his bed to the two-level cart of Halloween decorations picking out things and directing where they should go, all while attached to an IV pole. I saw Tori’s Dad just down the hall from our room and got an update from him. He looked good considering his 14-year old had been home about four of five days since being diagnosed on August 8th. I could hear Tori calling for her dad to come help her. The once talented athlete now can’t walk but she still has spirit. Her voice sounded just like any teenage girl’s voice slightly annoyed with her father.

The attending stopped by the room to say good night. We talked a bit and she suggested that just to be on the safe side, Liam not have anything to eat or drink after midnight in case something changed and he did need to go to surgery. I didn’t like hearing those words but fine, we’ll do it but in my head I thought, “he’s not going to surgery.” Liam and I went to bed and I woke up each time his vitals were taken during the night to make sure he didn’t have a temperature. Instead of having a high temperature, it was now super low, 95 degrees. The clerk came back several more times to check it and it stayed at the same temperature. And then I realized that his side of the bed was completely soaked with pee. The IV fluids overloaded his bladder capacity again and he had peed in bed. He was lying on his side and everything except the arm that was on the upside was soaked. And the blue plastic mattress made everything even colder. I had to get him up, take off his jammies, wipe him down with a wash cloth, try to convince him to be quiet so we didn’t wake up our neighbors, remove the sheets, wipe the plastic mattress with alcohol, make the bed and get him back in it. He waited for me in the dark curled up in the armchair in the room and complaining his feet were falling off the chair. And when he got back into bed and realized that his puppies and pillow and soft yellow blankie weren’t there, freaked. His favorite guys were all soaked, literally dripping, with urine and needed to be washed. With his permission, I took them to the laundry room on the floor for patients and their families and washed his favorite guys. Liam eventually fell back asleep but his temperature only rose a few tenths of a degree. As the first rays of sunlight hit the room, the nurse came in with a blood culture bottle. The fellow was concerned about Liam’s low temperature and wanted to take a blood culture. I dreaded that collection and asked that it be delayed until Liam was awake. Liam woke up and told me he was hungry. We went to the kitchen, he had a yogurt. He wanted a second yogurt. I gave it to him and as he was finishing up the second yogurt, I remembered he wasn’t supposed to eat or drink anything just in case he needed surgery. Oopsie. We went back to the room. He put on his Superman costume. There was Halloween excitement in the air with lots of hospital employees dressed up. Liam wanted to fly in his Superman costume but flying was difficult when you’re attached to an IV pole. I asked if he could be disconnected so that he could run. We got the OK. He flew around the race track circuit on the floor. He was full of energy. We moved to the playroom where he built a Superman fort. The resident came in to tell us that surgery called and they were ready for him. I told the resident that I was waiting to have a conversation with Liam’s team and the attending given the feedback from infectious disease oh and, by the way, he ate two yogurts for breakfast so he couldn’t go to surgery any way. It was a tense conversation. “What do you mean he ate?” “How could you think I was going to let him go to surgery without further discussion?” She left and came back to say they were waiting for one final test from infectious disease regarding sensitivity and what antibiotics would and wouldn’t work with the type of bacteria he tested positive for. A Halloween parade was forming. Liam bounded around in his Superman costume running back and forth past the parade of walkers and wheelchairs. He ran to the front of the line to walk with his friends from child life leading the parade. He collected candy. He squealed with excitement. He didn’t look like he should be there. But he was. We ran into two of the nurses from the POU, Sloan-Kettering's intensive care unit, dressed as bat girls. They called out to Superman Liam and told me they were anticipating seeing us yesterday. They had heard about the pumpkin head incident. Hmm. The resident told me they were approaching our room during rounds. We went back to the room and waited. There was a new attending on duty. I ran into her in the hallway and she introduced herself. And then she told me the antibiotic sensitivity was back from infectious disease. The findings were that the two antibiotics Liam was being given would not work with the type of bacteria he tested positive for which seemed to confirm the theory that the first blood culture was a false positive. I stood there shaking my head. I was happy, of course, to hear this but so disappointed for him that we had to take this roller coaster ride, miss three days of school, and lose precious hospital-free time. Her feeling was to follow the recommendation from infectious disease. But, because Liam did have a high temperature and a high white blood count, she felt the prudent thing to do would be to send us home on antibiotics. I asked her if it was an IV antibiotic and thankfully she said no, it came in pill form. We were out! It was 2 p.m. We packed up, left the hospital wearing his Superman costume, went home, dropped off our bags, and went straight to the Halloween party at Apple Seeds where Ella was attending dressed as a witch. As we walked in, Ella was in her stroller on the way out. We all reunited with lots of hugs and laughs. That is how quickly we went from one world to the other. Liam played, reveled in being a kid, and had fun. We moved into a room where a concert was going on and sat in the front of the room. Liam and Ella divided my lap. The singer sang. Ella danced. Liam kept running to the back of the room to get cups of pretzels. He ate nonstop. The singer asked if anyone wanted to help him sing. My son who melts with stage fright during school recitals, jumped up first and went to the singer. He took the microphone and sang clearly and loudly the alphabet song. That’s my son.

A note to my son: Liam, in 20 years when you’re reading this account of what happened this week I want you to know how proud I was of you and how disappointed I was that you had to do hospital time. You are my hero and you once again made the best of the situation. You always do and for that, I love so, so, so much.

A note to my daughter: Ella, in 20 years when you're reading this account of what happened the week of Halloween, know how much Liam and I missed you and talked about you. Nothing was right without you with us. You are the sunshine and I love you so, so, so much.