I tried to start blogging when the babies were in NICU at the children's hospital...something didn't work right and I gave up. Too much else going on, perhaps? Instance number one where parenting with a partner might have been easier. It's not the way things worked out, so on my own it is. My inspiration now is desperation...a desire to make sure my little man gets all the help he needs.
First, the facts.
My boy has had a series of health problems since he got home from his nine week NICU sentence. He was misdiagnosed with tracheomalacia, a condition that's common in preemies who have been intubated, for what felt like ages but was really only 6 weeks. We landed in PICU on February 4, 2011, and he was diagnosed with a sub-glottic hemangioma, a benign tumor located just below his vocal cords. Our ENT presented me with two options, a "trach," (street for tracheostomy) which he would have until his airway grew big enough to move air, or a beta blocker called propanalol, found serendipitously in 2008 to shrink hemangiomas. I went with option b. My boy was started on the medication and given several breathing treatments, and after 10 days, we were finally home, with the assumption that by the time he was a year old, we'd be through with it all and he would be able to breathe.
Girl baby is at home with my folks.
Post dinner snuggles two weeks later...I look at the boy baby's eyes....then I look again. No, I'm imagining this. I tell my dad, "look at his eyes."
"His pupils are different sizes!" My mind is racing...what is this? I called the 24 hour nurse line, who advised me that with his history and a relatively new medication to head to the ER. By now, after umpteen runs before the hemangioma diagnosis was made, I'm an ER professional. My kid breathes loudly, so we're always moved to the front of the line. We're seen quickly, and quickly released, with a "follow up with your PCP and it's probably a side effect of the medication." Our PCP called us first thing, and referred us to a pediatric opthamologist, who was able to see us the next day. He agreed that it could be a side effect, but recommended MRI confirmation to make sure it wasn't old blood (from his intraventricular hemmorage from birth), tumors, or something else. Since ENT also wanted an MRI, I quickly agree.
Girl baby is at home with my folks.
Fast forward to early March when I noticed he had a bulging fontanel...I hopped on google with my fingers crossed, and said, "oh, at least he's not barfing...." just as a great spray came out of his mouth and nose...off we went back to the ER praying "please don't be meningitis please don't be meningitis please don't be meningitis." I began reciting his history, as I always do on these ER runs, "29 week preemie twin, history of tachypnea, aniscordia, sub-glottic hemangioma, 3 ml daily of propanalol," and came to "bulging soft spot and vomitting" and we were rushed back into an exam room. They took his temperature, no fever, but they explained they would need to do a spinal tap...while I'm generally tough as nails and knew going in that parenting without a partner would be hard, it was time to call in reinforcements. I called my dearest friend who dropped everything (her husband, three kids, and dinner) to come be with me as I watched my 5 month old's back get numbed and covered with iodine in preparation for the tap. Our ER doctor decided to get a head CT before proceeding...this might be scary to an average parent, but we'd been through this once or twice before. She thought that since my boy has the hemangioma in his airway, and also a small one on his back, that there was a possibility he could have them near his brain stem. I suddenly found myself whispering "please let this be meningitis please let this be meningitis please let this be meningitis." The CT came back negative for tumors near his brain stem....and his heel stick (the baby equivalent of a finger prick) came back negative for high white blood cells. Combined with his lack of fever, and the fact that we were due to get an MRI with sedation in the next week, she backed off on the spinal tap and discharged him....we still don't know what happened that night.
Girl baby is at home with my folks.
Friday, March 18, 2011. We arrive at the hospital at 6am, the boy sufficiently starved, prepared for our MRI with sedation ordered by our ENT, opthamologist, and the ER doc who we saw the bulging fontanel night. The boy has been starved and fed a bottle of breast milk. He gets into his sweet tiger gown and we head down to radiology. There, we're greeted by the anesthesologist and a nurse....they explain the study would take about 45 minutes and I would meet him back up in the PACU (post anesthesia care unit) in about an hour and a half. My dad arrives to keep me company, and I hand my boy over to the staff...I'd grown to trust the hospital staff so saying goodbye wasn't terribly hard. My dad and I head up for coffee...discuss my anxieties about the MRI's findings, wipe my tears, and head back down. The anesthesiologist is in the hall and mentions that they've expanded the study, and that it would be about a half hour longer than anticipated. I chat idly with other families in the radiology waiting area..."what are you in for?"....an hour has passed. I stopped a nurse and asked if she could check on my son. She brushes me off with something of a "not my job" air. Another hour ticks by. Another 20 minutes. I hear my baby SCREAMING in the hallway. He's there in the big, industrial hospital crib surrounded by nurses and the anesthesiologist. I reach for him, and am told, "wait, let's get him upstairs." I wasn't about to let him out of my sight, so I stuck right by his side...the staff exchanged glances but I ignored them and held my sweet boy's hand. We rode up to the PACU and was told to wait while they gave report. 10 minutes passed and I was called back. He'd stopped crying. He was sound asleep...."We gave him some morphine to calm him down." "MORPHINE?! to calm him down?! I was right there!" I thought but didn't say...I just picked him and cradled him to my breast. He starts to stir, the nurse says to go ahead and feed him....he's still mostly asleep, but I offer the bottle of breast milk....he takes a suck, snores, sucks again, snores, sucks, snores, then snores again. We move to phase two of recovery....I'm asked "did he eat?" I snark, "yeah, like an ounce. They gave him MORPHINE, so he's asleep." Suddenly we're being discharged. "He's still asleep...should we be taking him home?" "Oh, sure, he's bound to be tired from the anesthesia and the morphine." I wrap him up in my Moby, put him in the car seat, and head home. My mom leaned down to get him from the seat and said, "he's louder! they let him go home like this?" I told her they'd said he'd be louder from irritation from the breathing tube. He continues to sleep in my arms. His breathing gets louder and louder. I undid his onesie and lifted it up. His chest is retracting, far worse than usual. Without putting him back together, he's back in the carseat, back in the car...My dad is driving like a lunatic through driving snow, my hand is on the back of my sweet boy's neck in an attempt to keep what little he has of an airway open....we make the usual 25 minute drive in about 15 despite the snow, I grab the carrier and run into the ER...The line is to the door....the woman at the back of the line looked at my monkey and yelled "this baby can't breathe." We skipped triage and were taken to an exam room immediately. The nurse begins preparing a racemic epinephrine, I argue "it's his throat, not his lungs," she tells me it'll help anyway. Someone yells "bag him" and there's my sweet boy with oxygen, epi, steroids, an IV....He's deemed stable enough to get to PICU, and I sit with him on a stretcher being run through the halls. The PICU staff begins their assessment, the attending is asking questions, he said something about the MRI, I said, "the hemangioma," he said, "it doesn't look like it is a hemangioma. it's an 'ill-defined, soft tissue mass.'" "You're fucking kidding me," I said. Just then the nurses gasp and step back....they've discovered his cloth diaper and look at me wild eyed....I say, "it's a diaper." "oooh." He's stabilized. He's hooked up to a heliox tank...part helium, part oxygen.We begin to settle in. I haven't pumped in nearly 6 hours, my breasts feel like two socks full of rocks, my mind is reeling from the idea that my baby has been taking a relatively un-proven medication for over a month for no reason, I'm furious with the hospital that saved my child's life at birth, and wondering how they almost killed him. I'm offered a breast pump, a toothbrush, a meal, some soap, and some linens. "Try to get some sleep" they say. Dr. ___________ (ENT) will be in in the morning. My dad leaves, and I'm alone to gaze upon the beautiful face I made, with relief that he was still alive, with anger that was even in question, and with tears as I processed the previous 14 hours. Our ENT came in the next morning, about 6am, and explained how he still felt it was a hemangioma....something about how the abnormality in his airway was vascular in nature...he again mentioned the tracheostomy...and said that if it were his child he would stay the course with the beta blocker. I asked him how an MRI could have caused this to happen....it must have been the breathing tube...irritating an already compromised airway. We spent the next night in the regular patient care rooms, and were home the next day. I was back at work on Monday, where I spent the whole day researching how I could get him seen by another hospital, who was the best pediatric otolaryngolgist in the nation, who I knew near Johns Hopkins, and ripping the hospital a veritable "new one" when they called and said, "we're just calling to see how the MRI went Friday." Time passes, I calm down, and resign myself to just making sure we don't have that anethesiologist again.
Girl baby is home with my folks.
Our PCP called and said, "did they discuss the results of the MRI with you?" "No, just that it wasn't a hemanigoma/is a hemangioma." "There's fluid on his brain. I'm going to get you into neurosurgery." I left work, shooting an email to my boss explaining why, I can't bear the thought of uttering those words out loud. I knew from other NICU parents that this was no good....brain surgery. shunts. unceratin outcomes. 70 percent survival rates. I sobbed uncontrollably the whole way home. Loud, horrible, wracking sobs. I flew into the driveway and scooped up my boy. Time seemed to stop until it was time for our appointment. 4:30pm the next day. I didn't bathe. I spent that night with him on my chest, admiring the shape of his skull and wondering how there could ever, possibly, be something so gravely wrong with such a beautiful head. We got to neurosurgery...another mom must have sensed somehow how I was feeling. "He's a wonderful doctor. Really. He's kind, and he is good. Look at him!" and pointed to her son, he seemed to a perfectly normal, happy 5 year old. I cried as I whispered "thank you." finally. FINALLY. we were called back to see him. He came back quickly, measured his head and said, "You know, yeah, there's fluid there. But it's still within the normal range...I expect it will solve itself." My family heaved a collective sigh. We all cried. We hugged and kissed the babies and whispered "Thank God"s....though we're not the God thanking type typically. If there is one, he/she/it certainly deserved our praises that day.
This is enough for now. I will write about April tomorrow.