The words, the feelings, the images, the memories are all at the tips of my fingers. They’ve been there with me since this whole ordeal started, just itching to get out and be told. But still, I am finding it so hard to take myself there. I don’t know how to tell the story. It’s too close to home, I suppose. And I’m sure will hit home pretty hard for any of you who have a little baby at home. It’s hard to imagine your baby in pain or suffering. It’s hard for me to imagine it, even though we lived it. And our story isn’t even that bad in comparison to some of the children we met at Children’s Hospital. Grief and despair run deep through the halls of Oakland’s Children Hospital. In many ways being at the hospital was exactly what got me through being at the hospital. It was a constant reminder of how lucky I am to know that at some point I would go back home with my baby. So many others there, have very different stories.
Sadie turned four on Oct 19th. We had a great party for her at our local tumbling gym. Carter had been uncharacteristically grouchy and clingy the entire party. I didn’t take special note of his behavior because well babies are babies. I only mention it now because in hindsight you scrutinize your every decision, and I wonder now how did I miss it? That evening the kids were sitting down eating dinner. I sat down behind Carter and BLAM I see it for the first time. His neck. It’s huge. He has a huge golf ball sized mass under his left jawline right on his neck. I touch it, it’s rock hard. It feels like he swallowed a river rock and it got lodged in his neck. I start panicking and pick up the phone to dial the emergency pediatrician line, Devin and I barely exchange any words, we are both feeling panic. The pediatrician considers sending us into ER but decides that office hours are only 12 hours away, so we wait.
It’s determined that he has a bacterial infection in his lymph node. We are sent home with antibiotic. He soon develops a fever. Three days go by, the mass is still huge and fever persists. I call the doctor again in a panic. She assures me everything is fine, that fever will break soon and these things take a while to go away. Two days later the fever finally breaks, but the mass is still as large as ever. Perhaps even larger. I’m starting to lose my mind so I can’t really trust my judgement anyways. I call the doc again. I feel like a crazy person. She tells me to trust her, and that everything will be ok. I feel like I’m going to cry and I say how do you know. How DO you know? How does she know its a bacterial infection? I tell her to just walk me through it. I just want to make sure I’m doing everything I should be doing, and not sitting around while something in there is getting stronger and harder to conquer. She tells me point blank. It’s not cancer.
That’s it. That’s exactly why I kept calling. It was something I feared so deeply but couldn’t even muster up the courage to even mention it in conjunction with my baby. I couldn’t even say it. But she knew what was going through my strong mommy heart, and she said it. She knew it wasn’t cancer because cancer doesn’t pop up over night like that. Also, the fact that it was accompanied by a fever (which was finally gone) indicates infection. I felt some relief and finished out the 10 day dose of antibiotic.
Two days after medication ended, the mass began changing color. It had a slight pink tone to it. I was playing cool, no more crazy mom. The next day, it was most definitely pink. I spoke to myself and said, be cool. It’s just irritated from rubbing on his shoulder. I decided that I’d keep playing cool, unless it was still pink on Monday which was 3 days from then. The next morning I wake up and the mass has grown considerably. And it was now beat red. It was as if a large tomato were hanging off the side of his neck.
I called the pediatrician. It was a Saturday. They were closing in 15 mins. Devin was at the dentist with the car. The kids were still in jammies. I threw on shoes and buckled them into the double stroller and ran the entire way to the pediatricians. I had no idea that would be my last time being home for a week.
She sent us directly to Children’s Hospital. She said at this point the mass was beyond oral antibiotic and we’d probably have to get Infectious Disease involved. I called Devin to come pick us up and off we all went to Children’s. We got into triage and I wasn’t even upset. In fact, I felt great. There was so much relief that something more was going to be done to end this ordeal. Carter is so stoic, but I know he’d been in pain for weeks. We were in triage for a few hours. The ER resident came and informed us that we would be admitted and we’d probably be here for a couple of days. That’s basically exactly when things started looking glum. Up until then we thought that maybe we’d have to spend one night. A couple of nights seemed unfathomable. We had no idea what was in store.
After a few hours we were moved to our “bed”. This is the exact moment reality set in. We walked through the large 3rd floor surgical ward doors and into a large room filled with beds. Beds that were only separated by drapes. Beds that were all filled with children in very severe pain. We walked past bed after bed of kids crying and moaning until we got to the very end of the room where there was an white metal crib cage, a reclining chair and an iv drip. I looked at Devin and tried not to cry. I thought triage was bad. I had no idea that we were being put in a group ward with zero privacy, no bed and the sounds of constant crying and moaning. I thought it couldn’t get worse when we were rapidly informed that Sadie had to leave. Carter was classified as contact isolation. He was not allowed to be put on the floor or come in any contact with children, even my own. I didn’t want to cry in front of Sadie, or Carter for that matter so I held it together and said my goodbyes to Devin so he could take Sadie. Thank god my mom flew up that night otherwise I wouldn’t have known when the next time I’d get to see Devin would be. The nurse there tried to comfort me, she said that she knows all of this seems so overwhelming and impossible, but I’d manage it and somehow get through it. Nighttime fell on day one. Although, in a hospital there is little difference between day and night. In the group ward, all of the lights remain on because it is still a working nurses station. Nurses and doctors coming and going, walking in and out of our curtains, talking at a normal day time voice to us, other patients and each other. I was told Carter had to sleep in the crib/cage. He would not. I took him out and somehow squeezed him into my chair that reclined partially down and slept with him in my arms, for as much time as we could get in here and there. He was hooked up to an iv and a heart monitor. Plus his vitals were taken every couple of hours and he had to get antibiotics every 4 hours, even during the night. When all of that wasn’t happening – there was most definitely cries, moans, and sometimes screams from the other children in our ward. I cried too. Silently. But I cried for Carter and I cried for all of these other children and all of their mamas lying right next to them.
The next day is such a blur. Somehow we spent the entire day in that ward without ever touching the floor or the walls. Looking back I really have no clue on how it happened. I just know there were a lot of doctors, a lot of new people coming in to poke and prod at Carter – but not a whole lot of answers. By nightfall I was just about to attempt to get carter squished into my chair with me to attempt sleep, when we were told we were getting moved. Apparently, someone who is on isolation shouldn’t be in a ward full of children recovering from surgeries.
We got brought to a new floor with all new nurses and luckily a room, with a door. Carter still had his crib/cage but I had graduated from a slightly reclined chair to a window seat, which in comparison was the most amazing thing I’d ever seen. That night we slept together on the window seat, in a room, with a door, and it felt great. We had a roommate. Another baby, but she was a sweet little thing who hardly made a peep and was only there to have her brain activity monitored over night for possible seizures. Her mom was very nice. In the morning when they got discharged I could tell she felt bad for me knowing that we still had no idea of what was wrong with Carter or when we’d be able to leave.
That day I heard news of Sadie becoming pretty affected by all of this. She was crying a lot. Asking for me. And had made an accident in her sleep, which is very unusual for her. It broke my heart. I begged and pleaded with every single doctor, nurse, specialist that I came in contact with. Trying desperately to have them let Sadie come up to see us. As it was now. She’d come to the hospital and wait in the cafeteria for hours and hours with my mom just waiting for me to be able to escape to come visit her for 15 minutes before I had to rush back up because Carter was hysterical or a doctor needed to speak to me. It was agony not seeing her. I had such guilt. I imagined what I would do if Sadie had been the one hospitalized. I didn’t want to seem like I was favoring the baby. And I really do think that if it had been Sadie, I would have stayed by her side day and night as well. Even though Carter is still nursing, I think I would have weaned him to be with her. The sick kid in the hospital gets mom, right? I don’t know. It’s all too hard. I don’t know if I did the right thing, I just know that Carter was too sick and too scared to be alone.
Late that evening something finally started to happen. After days and days of just sitting around while dozens of doctors would parade in through our door just looking at Carter and agreeing, “Oh yeah, that looks real bad.” And then doing absolutely nothing. We were finally sent down to imaging to have an ultrasound. Devin and I had to hold him down while they pressed that cold jelly-covered nozzle on his throat. He cried out in obvious pain. And it took every muscle I had in my brain to overcome my heart from grabbing him into my arms and taking him out of this situation.
The ultrasound turned up inconclusive. They couldn’t really make heads or tails of what was in his neck, whether it be liquid or solid, was still a huge mystery. That night his fever spiked to 102.9. He hadn’t eaten in days. And was becoming increasingly less like himself. He barely smiled, didn’t want to play. All he did was say “no” and wanted to nurse. So that’s what I would do. I held him in my lap and nursed him almost all day every day.
Things were starting to go too far, and we’d been there for many days. Infectious Disease was called in. Like everyone else that came into the room, they came in wearing yellow body covers, gloves and masks. Carter would start screaming No, and I would feel the deep gut pain of knowing I was going to have to hold him down yet again so someone else could poke at his huge tomato colored mass hanging from the side of his throat. But this time something new happened. Infectious Disease came in like a knight in shining armor. They came in with a plan. And they came in with some good news. The plan was surgery. We didn’t know when, we’d have to track down a surgeon and discuss details and schedule – but that was the plan. And the good news was that they gave the ok for me to take Carter downstairs to see Sadie. He had to stay in his little push car, because he wasn’t allowed to touch anything – and we had to meet in the grassy patch outdoors where no other children were, but we could do it.
The elevator doors opened and Sadie ran to us all smiles and so so so happy. Carter was squealing. When Sadie approached us she just sort of stood by Carter and smiled awkwardly and put her hands behind her back in a very “not-so-sure” kind of body language. She was a little shocked to see him with a large cast on his arm to keep him from pulling out his iv. He had tubes hanging from his hands and bandages all over his arms from various blood draws. His mass was also now circled with black marker. I could imagine it was quite scary for her to see him this way.
After a few minutes she got used to it and we got to spend a few quality moments together, all four of us. Carter didn’t last long. He was feverish and upset and in pain. Sadly we had to head back upstairs pretty abruptly. When we got back up there we were greeted with some news.
Carter was on the schedule for surgery. And it was happening tonight. It was about 1pm, surgery would probably be around 8pm so I’d have to quit feeding Carter immediately. I should have known better, but I wasn’t expecting that. I didn’t really realize what that fully meant. I wasn’t going to be able to even nurse him. I really had zero idea of how I was going to get him through the rest of the day without nursing him. He hadn’t even had his nap yet and nursing him is how I get him to fall asleep. It was a nightmare. For the next eight hours i rocked him, walked the halls with him in my arms, put on show after show… all trying to keep him happy and distracted from wanting to eat. As you would imagine, he was beside himself. The one thing that was giving him any comfort during this ordeal, I just took away. At one point he noticed his sippy cup peaking out of a drawer that I had tucked it into thinking it was out of sight. How I wish I could have gone back in time and hid it better. He wanted water so badly and I had to refuse it. For hours and hours. Finally, 8pm had arrived and the nurse walked in. We jumped up, so happy to be ending this horrid day and moving onto something that although would be very difficult, was a step toward recovery. The nurse looked embarrassed. It wasn’t her fault. But she had to deliver the message that surgery had been cancelled, but someone from the surgical team would be up to talk to us about it. Turns out, the anesthesiologist was uncomfortable giving Carter anesthesia knowing that he had nursed at 1pm. Why they waited until 8pm, after we had starved our sick and feverish baby out all day, I’ll never know. But good news is that surgery will be tomorrow. Bad news is, it means you’ll have to starve Carter out all night. Yup, that’s right. We know you’ve been starving a one year old baby all day. Feed him once right now, and that’s it, no more after that. Oh, and also, we have no clue what time the surgery will be tomorrow. Just that it will be tomorrow. So starve him all night just in case it’s in the morning. But it might not be until late afternoon tomorrow. We’ll keep you posted.
I could have died right then and there. I nursed Carter immediately, and he fell asleep immediately because of his insane exhaustion from the day. Which was terrible. I wanted him to eat and eat and eat, knowing he would not eat again for an entire day. But, his body was done. He went limp and collapsed into my arms and was deep deep asleep. Until about 10pm.
He woke up and felt like a coffee mug full of fresh brewed coffee. He was boiling hot. I’ve never felt a human being at that temperature. He was simultaneously crying and collapsing like a limp doll. I called the nurse in a panic. She took his temperature. It read 103.5. He was was listless and moaning. I asked for tylenol for him. The nurses couldn’t do that because he was supposed to be starving out and couldn’t ingest anything. His fever was so high the staff was worried that he may have contracted a new virus on top of his infection. They informed me they needed to draw blood.
I had to hold my baby down while his body was on fire. They had to stick needles into his hands and draw several vials of blood. He screamed like I’ve never heard. It was determined that he was able to get tylenol, just not orally. After I finished holding him down so they could take blood, I had to flip him over and remove his diaper and hold him down while he kicked and screamed and cried and burned up, so they could stick a suppository in his bottom. I was crying when I picked him back up to my chest. He clawed at me and tugged at my shirt, not understanding why I wouldn’t comfort him with the milk from my body. He went from being simultaneously irate to completely limp. I cried and rocked him in my arms and wondered why he still loved me. How and why does he trust me? He doesn’t understand what we are doing here, he just knows that I’m letting it all happen. I’m not protecting him. I’m not even feeding him. I held him in my arms while he screamed and kicked and thrashed. I rocked back and forth and hummed the Beatles “Yellow Submarine” over and over and over until 3:30am when he finally drifted off to sleep. But anytime I attempted to sit down he would start to kick, so I did what I had to do and I stood and rocked and hummed until the sun came up and the surgeon came in to say hello.
The surgeon hadn’t yet seen Carter and wanted to take a look at this mass that he had heard so much about. He apologized for the night before and said he understands that starving Carter out is cruel and unusual. He was uncertain of when he would get us in that day. He said he was going to try very hard for 10am, but that was sort of a hail mary. I thanked him for keeping us in mind while tears streamed down my cheeks. I was so defeated. My emotions had been run through such a battle I was finding it hard to keep it together. He left and I continued to rock. An hour later a nurse came in and said to get ready, we were being prepped for surgery. This wonderful saint of a surgeon knew what we were going through, and somehow pulled a rabbit out of a hat and was ready to fix my little man. I was so caught up in the excitement/terror of going into surgery that it took me a moment to remember that I needed to call Devin at home and tell him to book it to the hospital. Luckily he made in without a minute to spare. And we walked into the elevator and headed into the operation room.
Carter really must be the strongest, bravest person I know. And he’s only one. He was all smiles and giggles and claps when we were in the pre-op sitting area. He was so happy and energetic, you would never in a million years guess he had been going through what he had. The fact that all of these grown ups wearing blue surgical outfits and masks scurrying about didn’t bother him in the slightest. He was so upbeat that even I was feeling completely at ease considering our current status and location. But then itt all started getting pretty real when the anesthesiologist came out to introduce herself, walk us through the process and give us a lengthy disclaimer about possible complications and dangers of anesthesia in babies. I was well aware of how scary this all was, but she just way way way drove it home for me.
We were asked to pick Carter up and lay him down on the surgical table while they strapped him in and put him under. I leaned over his body and kissed his face and told him I loved him as they ran anesthesia into his iv. His cries faded, his eyes closed, his breath got deep and low. He was under.
I lost it. I felt broken. I cried a deep horrible cry. I felt these horrible feelings of thinking what if this was the last time I’d ever see him, I would tell myself no, to shake it off, to not put any energy into such terrible thoughts. But as much as I did fight it, the fear was always alive in my heart, just buried deep behind the real and overpowering sadness and hope that he would come out of this healed. The surgeon put his hands on my shoulder as I sobbed. He said, “Little man will be fine. I have one just like him at home, I won’t let anything happen to him, I promise.” I tried to reply thank you because that sentiment really truly helped me. It made me feel like he understood that he had my heart strapped down to that table, and I couldn’t live without it. His statement made me feel safe. As we walked out of the surgery room to head into waiting Devin and I collapsed into each other and cried. I cried and cried and blubbered that I’d never felt this feeling in my entire life, I was so sad, sadder than I knew was possible. Devin was in shock, he couldn’t understand how we got to where we were. A few weeks ago we had a crazy, I mean THE craziest little boy known to this earth. So happy and so full of spirit, and now he is unconscious in an operation room. It was true… how did we get there?
For anyone who’s ever sat in an operating waiting room, you too can understand how deadly quiet it is. Everyone sitting there, in this case all parents; watching the clock, checking their phones, staring at the door, wiping tears, just sitting – all while time is standing still. Every time the door opened everyone would jump and hope to see their child’s surgeon walking in. And eventually ours did. Everything went well. Carter is being taken into recovery, the nurses will call you soon so you can go in and be by his side when he wakes up.
What seemed to be a million years later, we were taken into surgical recovery where children are lined up bed after bed while their parents sit by their side waiting to see them open their eyes. We saw him instantly. He was the littlest body in a row of beds. He was hooked up to a million tubes and was cocooned by even more blankets.
It was overwhelming to see him that way. There was also an odd sense of relief to see him resting. He had been through so much in this week, I felt happy for him that he was finally resting so peacefully. I understood it was not a voluntary rest, but even so… I felt relief for him. Devin and I sat. We were right up against his bed and we waited waited waited. Sometimes we spoke to each other, but mostly we waited. We studied his body waiting for him to give us a signal that he was waking. He slept for a very long time, children all around us were waking. They were disoriented and nauseous. Some were crying. Carter just kept asleep.
Finally he twitched. We jumped out of our seats. I hovered over his face so that the first thing he would see would be me. He was puffy and looked disoriented. He started to cry. I picked him up to hold him against my body. That was the first time we saw his bandages. He had a huge pillow of gauze on the side of his neck with surgical tape wrapping around him. He was unable to really move or rotate his neck. Underneath the bandaging was a plastic tube sewn into the side of his neck to act as a drain for any remaining blood or puss to escape. He cried for a moment in my arms, and instantly wanted to nurse. For a moment I had forgotten it had been 2 days since he had eaten. Finally, I was able to give him exactly what he wanted. I fed him. And he fell back asleep in my arms.
Later on we were brought back into our room where he slept in my lap almost the entire day. He was past exhausted, and he was recovering. His fever spiked once again, which we were told to expect. And he had severe diarrhea, probably from the anesthesia. Night fell upon us and I was looking forward to getting to sleep – which at this point I was delirious from standing and rocking all night the previous night. But before that happened we were notified that we were being moved again. A teenager was getting put in our room and there is a law against a baby and a teen sharing a hospital room out of safety precautions for the baby.
We were moved into the nursery. Which sounds sweet. But in reality it is a group ward, much like the surgical ward but replace all the beds with cribs and crying newborns. The very day my son had surgery we got moved into a room full of newborns. And that is how he had to recover. The noise that night was so intense it was almost comical. I couldn’t believe it – it felt like a dream. The shrill sound of newborn cry would come and go every 15 minutes or so, accompanied by sounds of nurses coming and going, new mothers frantically trying to soothe their new sick babies, and all of the lights being on at full insane brightness.
Carter had terrible diarrhea and began vomiting. This persisted throughout the night. It seemed almost every time we actually fell asleep we were back up again within minutes to get new clothes and new sheets and blankets from him getting so sick. Now this is going to sound crazy, but at one point during the night I woke up completely unaware of where I was. It was beyond waking up disoriented. Not only did I not recognize where I was, I couldn’t remember who I was, or who Carter was, and if that was our house. I sat there awake for at least 20 mins pondering the questions of what my name was and if I had a life outside of where I currently was. I couldn’t remember if I had family, or what my house looked like, or what Carter’s name was or why he was laying with me. My mind came together eventually and I became very aware of my truth. But it was the absolute strangest feeling. Since then, I’ve been told about stress induced amnesia and I’m wondering if that was what I experienced. Whatever it was, it only lasted about 20 mins and nothing like it has happened since.
The next day Carter was fever free and hadn’t vomited since the night time. He was getting bursts of energy and I was beginning to see glimpses of his infectious personality that I hadn’t seen in a very long time. I wanted so badly to go home. I wanted Carter to see Sadie and I wanted to let him run on the ground and touch things. I wanted to move without having to pull a drip iv with me every step we took. Every doctor we saw that day told us it would be a few more days. Then, once again, our surgeon rode in like a knight on his noble steed and told us he would be happy to put in the request to have us discharged TODAY and that there was no reason I couldn’t administer Carter’s antibiotic myself at home. He drew up some paperwork. I was trembling I was so excited. I sent a text to Devin telling him that maybe, just maybe, we might get sent home today. He was so happy, I had to really work hard to convince him to not drive to the hospital right that minute, just in case it didn’t happen.
Within a few hours it did happen. Our nurse came in and told me infectious disease was on their way up to do one last assessment but it looked like we would be going home. She told me she’d start putting together a care package for us to take home for dressing his surgical wound at home. I sent another text to Devin, this time I couldn’t stop him. He and Sadie were in the car and on their way.
That evening, after seven days of hospital isolation, Devin, Sadie, Carter and I walked out the front doors of Children’s Hospital together, got in the car and drove home. Carter continues to have some follow up appointments, and is left with a scar on his neck. I came home and finally tried to process everything that had happened and really let my emotions out. Sadie is now back to her normal self, but went through a brief moment of acting out emotionally. She of course was affected by this very much, and I can imagine it was hard for her 4 year old brain to process what was actually happening to her family. Devin and I have been left feeling incredibly grateful for our family and for our kids courage and strength during this ordeal. I didn’t know it was possible, but I feel more bonded to my children and my partner than ever before. We went through something that for me personally, has been completely life changing. This is my tribe. Those are my loves. I am so grateful.