Goodness. What a weekend. WHAT.A.WEEKEND.
Louis’ scheduled heart catheter revealed the cause of his decreased heart function but not without a price! As Louis was taken back to the operating room, the anesthesiologist switched from oral/gas sedation to IV sedation and when that happened, Louis’ heart finally relaxed. See, it has been working overtime for the last 6+ months, and the medication told his heart to slow down. And it did. But it stopped. Louis’ heart stopped beating.
When you take your child for a heart catheter or an operation, you kiss them goodbye and you are escorted to a waiting room. The soft-voiced receptionist asks if they can get you anything, and they give you a postcard-sized paper that gives you your child’s number. This 9 digit number will tell you what part of the procedure your child is in; pre-op, surgery, recovery, post-op, etc.
We got our postcard and sat down. I always scan the waiting room, wondering if the other parent’s can feel my anxiety, or if I can sense theirs. No one seemed to be as on edge as Dan and me, but that’s likely my perception. Dan and I were chatting about how to occupy our time. He ran to the cafeteria for breakfast, but it was about 11a by now and breakfast was over. So he returned with a salad and some pita bread with hummus. I couldn’t eat. I picked at some pita but my feelings were all too familiar. I sat, waiting for the other shoe to drop, as it usually does. And then it did.
I had shoved the postcard into Louis’ diaper bag and forgot about it. Last time, we decided we didn’t want to see what step he was at because it made us more anxious. This time, I checked the number and walked over to the display. It said, “178682 IN SURGERY” in green. I went to tell Dan. I said, “That’s weird. Usually they come and tell us that the procedure has started before changing his progress from ‘pre-op’ to ‘in surgery.’ I figured things were just humming along. And about 10 minutes later, the receptionist came over and escorted us to the consultation room. Everyone is escorted to a private consultation room, no matter what progress or result the procedure has. Thank God we knew that ahead of time. At this time I was still thinking, “Oh good, that means they found something structurally that they can repair straight away.” We quickly learned that was not the case.
In walked the Nurse Practitioner that has been with us the last two days, leading us through the procedure process, and following her was our favorite care manager. The NP said, “Ok. We had a bit of a rocky start. Once Louis was sedated his diastolic pressure bottomed out. The nurse was right there and she was able to massage his heart while the anesthesiologist administered a dose of epinephrine and they got his heart beating again within a minute. So Dr Joseph had to move very quickly. LOUIS IS STABLE. And Dr Joseph is moving forward with the heart cath. We do believe, since Louis’ heart stopped that this is a coronary issue. So I need to prepare you for the worst. It is likely that Louis will be put on ECMO and brought to the PICU. And then the doctors will discuss what to do next.”
I felt like Alice in Wonderland, when she drinks that potion and the whole room gets small and she grows large. Did she say his heart stopped? Epinephrine? They shout for a dose of epi on Grey’s Anatomy when someone dies on the table. Is Louis going to die?
Louis is stable. STABLE. Ok, OK, ECMO, again. ECMO fuck. Ok, I can do this. We don’t have a choice. No choice, we can do this.
Our beloved care manager asked a few clarifying questions because I was completely speechless. And then she allowed us to stay in the tiny consultation room. She brought us our things from the waiting room, and glasses of water. When they left the room, Dan and I both began to cry. All I could say was, “I don’t want our baby to die.”
I can’t even believe that thought tempts reality. UGH
The day before Louis’ heart catheter, we had scheduled a visit with a new cardiologist to get a second opinion. He went over the basics, and asked all the usual questions we have been over a million times. I felt that a second opinion was a good idea because he didn’t know us so he could be very objective with his diagnosis. He was very honest and told us about the Heart Failure Team at U of M and implied that our hospital doesn’t do transplants and that Louis’ heart function will not recover and a transplant is very likely. Dan and I went home very unsettled.
And now we’re sitting in a room with the news that Louis had gone into cardiac arrest and things were about to get a lot worse before they got any better. At this point, I cannot say how much time we spent in that little room. It felt like days and minutes at the same time. Each time someone walked by the otherside of the door, my heart rose up into my throat. I thought, “Please don’t come in here. Please don’t come in here.” I had reasoned with myself that if they were already coming back to talk to us, that something terrible had happened. Shortly after, our cardiologist came in to give us more information. I barely remember our conversation. She explained that Louis needed a blood transfusion and it looks like he is severely anemic. But I am having trouble remembering the specifics.
While we were talking, the interventional cardiologist and PA came back into the room. He looked relieved. I felt like I might throw up, or my arms would fall off, or the floor would be crumble from under my feet. He repeated that Louis was stable. That his diastolic pressure bottomed out. The nurse massaged his heart. The anesthesiologist administered epinephrine. Louis is stable. They took some blood to the lab and then gave him a blood transfusion. His hemoglobin was low. Low hemoglobin means low red blood cells. Red blood cells carry oxygen. Having low hemoglobin means low iron, means Louis’ heart was working overtime to send oxygen rich blood to his body. He said he continued with the heart cath to map Louis’ heart. He asked if we wanted to see pictures. Dan and I both shouted, ‘YES’ at the same time.
He pulled up these short clips of Louis’s heart. They were black and grey like an x-ray and it showed the cath probe inside Louis’ vessels, pushing contrast through his veins. We could see what beautiful flow Louis’ coronaries had. We could see he even had an extra coronary. We could also see the weakened area of the heart muscle, which is likely a result of his “heart attack” from last fall. Our cardiologist is always so nice to me. She is gentle but honest when she delivers information. She said, “Of all the things that could have caused this, THIS IS THE BEST. This can be managed with medication, and improved over time. No surgery.” I felt fear and relief at the same time. Louis’ heart stopped. What does that mean? I needed everything explained to me several more times over the next 4 days.
We were told Louis would be sedated and intubated and in the PICU for observation. That it was going to take a while to get him settled, and they would have to change his stay from outpatient to inpatient and we would be here for a few days. Dan and I headed slowly to the 8th floor. We stopped for tea and coffee (decaf duh). And then we sat in the PICU waiting room for someone to come and get us. All too familiar; the bing of the elevator, the humming fluorescent lights, the bright colorful furniture. I would like to say that I have never felt so dreadful and hopeful at the same time, but each time I wait in this room, I feel exactly that.
The first person I saw was one of our favorite nurses. She cared for Louis the last few times he was inpatient. She came over and gave me a big hug. At this point, I am just silently crying. I felt like she might cry too. She said she checked in on him and they are getting him all settled in and someone would come get us soon. She was happy to see us but sorry we were here. And that was a sentiment that carried us through our care. Every familiar face I saw gave me a feeling of comfort and deep sadness at the same time. I felt happy to see them and then felt bad that I felt happy and then more sadness that we were in this place and...ugh shit.
The next person to come speak to us was the scrub nurse that had introduced herself before the start of Louis’ procedure. She had assured me that she would take good care of him in the OR. I knew she knew how nervous I was. She came over and before she spoke she just bear hugged me. And I began to sob. She said she was sorry. She explained how she massaged his heart and it all happened very quickly and that is why they have an anesthesiologist right there to correct situations like this. It was just too much for my heart to bear. This woman helped my son's heart start beating again. WHAT THE HELL. I am usually really good at articulating my feelings but I AM BEYOND WORDS AT THIS POINT.
We were walked back into the PICU, escorted by our favorite familiar faces asking, “how do you feel? It’s ok. Let it out.” Walking through that PICU feels like….defeat. It feels like a hurdle we keep working so hard to overcome and then somehow we are asked to leap over it again. I had to be reminded that Louis is bigger and stronger now. That it’s not heart surgery this time. New medications and more frequent check-ups are our treatment plan.
We are walking by more familiar faces, smiling, with sympathetic eyes. I love these people. They work so hard for so many families in VERY critical times. They feel loss and joy and love and sadness EVERYDAY, for us and with us. How lucky we are to have them on our team, to be part of our family of support helping Louis grow healthy. UGH
Everything is so familiar but brand new at the same time. Seeing Louis sedated and intubated is a sight we’ve seen before but he is 2 years old now. He is big and still looks so small. I want to climb into bed with him and scoop him up but I cannot. I ask if I can hold him. I cannot. I know I can’t, but I had to ask.
Louis had a very unsettling night, tossing and turning, while we try to find a balance of sedation to keep him comfortable. No sleep for me. We secured all of his IV lines with these velcro sleeves and then we took the breathing tube out around 5am (Friday morning). His little voice was hoarse but he let us know he was mad. I finally got to hold him. His poor belly had now been empty since Wednesday night. I am sure he was sore and hungry and tired. We both cried. All day Friday, Louis was inconsolable. He would sleep a bit and wake up crying and rolling around and nothing, NOTHING I did quieted him. He only wanted me to hold him and still he was unsettled. Friday night, Louis’ behavior showed little improvement. Our team decided it was a good idea to get a head CT to make sure there we weren’t missing anything. Sometimes when cardiac arrest occurs, no matter the length of the arrest, it can affect all parts of the body. At this point, Louis has been screaming for hours. He insists I hold him and he is just repeatedly slapping me; my face, my chest, my arms. I am sobbing. Between sobs to the Intensivist, I mutter, “I don’t know what to do! Something is wrong!”
Dan feels terrible because he doesn’t know how to help. When Dan tries to take Louis, Louis just cries even harder. Louis is not himself. Dan and I are worried something else is wrong. A new face, Chad, helps Louis and I hop into a wheelchair to take us to CT. Louis cries most of the way and starts wailing when we get into the CT room. Chad is so nice and gentle and he keeps calling me, Mom. He says, “Ok Mom, I think no matter how we do this, Louis is going to cry.” I agreed and just let Chad take him. Someone informs me that there is a bathroom across the hall. I stumble over there, and without turning on the light, I walk in, lean against the wall, and slide down to the floor. It’s pitch black in here and I’m not sure where the sink or the toilet are. I can still here Louis screaming across the hall. I can feel Dan standing beside me. This is the first time I begin to pray.
All I can say is, “Please don’t let anything be wrong with his brain. Please don’t let anything else be wrong.” Repeat repeat repeat.
Louis was given medication to settle him for the scan and it started to kick in about 10 minutes after the scan was over. He was very relaxed, silly even. He insisted on sitting in my lap and having Dada push us around the PICU. He waved at everyone and said hello. He pointed to all the pictures and made the corresponding animal sounds. I would have thought he was back to his old self, but his eyes were droopy and puffy and I knew it was the medications.
After receiving the all clear from the CT scan, we began to breathe a little easier. He was delirious from the medications and the cardiac arrest was hard on his body. He just needed rest.
Louis took a morning nap on Saturday and after a comedy of errors trying to catch up with my dad, I walked home to take a shower. That sounds crazy, but it’s under 2 miles away and on the same road. It was a really nice day, and my cell phone battery had died. I knew Louis was ok and sleeping, so it was nice to have 30 minutes to myself without fear of someone needing me. When I finally got home I made sure to let Dan and my parents know I was safe. I turned on the shower as hot as I could stand it and just put my face under the water. I could still hear the sounds of the hospital monitors beeping. More crying.
We spent another night in the PICU and we moved to a general in-patient floor on Saturday. They check on you a little less, so we were able to get more sleep. Louis was given a little car to drive around in. When he wasn’t napping, he was insisting we push him around. He had cords and IVs hanging from his feet, arms, and belly, underneath his hospital gown. It was very cute and a little sad. He was still very puffy from medications and IV fluids. But his light was finally shining through. Saturday night, another familiar face came to say hello from the PICU. And I asked her a million questions about blood, and the heart, and science.
Loads of doctors and specialists came in and out for two days. They were all very kind and asked similar questions and I felt confused. How did this happen? Louis’ official diagnosis is Iron deficiency anemia and that is basically diet related. It’s so severe his heart stopped for a routine procedure. He eats what we eat. He drinks 20 oz of milk a day, that’s 4 5oz bottles. I even researched milk and milk alternatives when we were weaning from breastmilk at a year old. Cows milk offered more nutritional value than any milk alternative. What I didn’t know was, it inhibits the intestines from absorbing iron. So as Louis has been transitioning from breastmilk to table food, his appetite hasn’t changed much. But his little body was slowly depleting it’s iron supply. Louis’ cardiologist looked at me with concern and said, “You aren’t saying anything. It’s making me nervous.” I told her I was making myself nervous. I usually ask a million questions and I am at a loss here. I made every doctor and nurse explain it over and over again.
On Sunday, we discussed at-home care at great lengths and they let us go home. And now I am trying to reason with myself. This was easy. Why am I being so dramatic? Why is MY heart so heavy? No surgery, no pacemaker changes. Louis will be ok, and will have careful and consistent monitoring. I think my fear continues to live in the, “WHAT ELSE.” What else am I missing? What else could go wrong? What else have we not paid close attention to? How could I have missed this? Did he really not show any signs of trouble? Was he really eating ok? Did he drink too much milk? Louis’ troubles have always been something out of my control. But this one feels like something I could have prevented and that is hard. My mom guilt is strong today. Though I am so grateful, I am also humbly reminded that I need a team of people to care for him.
Parenting is hard. I am so lucky to be Louis’ mama. I am earning my grace.[...]