Lilly started her normal cough she gets 2-3 times a month, that congested type cough that she gets that keeps her up all night coughing to the point of gagging and throwing up if she’s eaten anything within the hour. At first, I thought, oh great here we go again! Cause we’ve been battling this cough for months with no resolution. Have gone to the pediatrician frequently, had an inhaler but the pediatrician had never heard wheezing so “asthma” was never truly diagnosed, there are no cough medications for 3-year-olds, so we had sort of learned to live with the cough remedying it with honey and warm baths hoping she would grow out of it.
However, this episode quickly turned from bad to worse. She developed a fever and needed to have Tylenol and Motrin alternated almost every 4 hours throughout the night. In the morning when I was expecting things to calm down like past episodes of this cough, things got even worse. I couldn’t break her fever, Motrin…. didn’t come down! Tylenol…. didn’t come down! Ice packs…. came down for a few moments then spiked back up! Cool bath…. only kept it down for just under an hour!
So off to the Pedi we went, they checked her and her oxygen levels were low so they sent us over to the ER. This is where a week-long battle began! I learned a lot in this week and came to realize…. when a mothers instinct is telling you something, LISTEN! No matter who you’re going up against, doctors, specialists, nurses, other mothers… doesn’t matter! you know your baby better than anyone else could possibly understand, so always trust that feeling in your gut.
We went to the local ER, that was about 15 minutes away. Its one of those town/city hospitals, ya know not a major hospital, just the average community type hospital, but it had been where I had always gone before so thought nothing of it brushing thoughts of taking the extra 15 minutes and heading into the city to Children’s Hospital. We were in the ER for about 6 hours, with continuouse oxygen, labs, and chest xrays. according to the ER doctor who seemed to understand Lilly, there was a good probability of pneumonia. It was on the line whether it was viral or pneumonia but with the fever and the oxygen not helping they started the antibiotics thinking better safe than sorry. Also starting steroids and nebulizer treatments. It was getting late, the fever was low and staying low but they couldn’t stabilize her oxygen levels which were, in turn, causing her heart rate to raise so they decided to admit her to be safe, but the ER doctor assumed we’d be “discharged in 24 hours, 48 hours max. It was just a matter of getting the antibiotics and steroids in her system”. This all made sense, I have a medical assisting background and was one of my grandmother’s primary caregivers in her final days so I figured out a lot about oxygen levels and such with her constant cycles of pneumonia and severe asthma along with COPD. We were moved up to the pediatric floor and tried to get some rest through the night.
The next morning she was off the oxygen and I was excited at the aspect of her getting better of course but of going home also, because I never imagined being admitted and was beyond unprepared. The boys are A LOT of work and while they have a wonderful dad, he’s working from home so the boys aren’t monitored the way they need to be considering the autism factor. So the on-call doctor came in that morning, which happened to be one I knew because he worked in the kid’s pediatricians office, he decided to keep us another night just to let her get off the oxygen overnight, ok still making sense. Then struck me with a wammy, “the x-ray doesn’t really show pneumonia, so we don’t need the antibiotic, it’s viral” I was confused but figured well he’s the doctor right? well by the end of the day she was back on the oxygen and had gone from out of bed jumping around to not wanting to move from the bed falling in and out of a nap.
My gut was telling me “its the antibiotics, she should never have been taken off of them” but the doctor, the nurse, the respiratory therapist all seemed in agreement. We spent two more sleepless nights on oxygen in the hospital, some nurses would get her up and move, blowing bubbles and what not but once rotations happened the next nurse would put her back in bed and on oxygen so she wasn’t getting anything coughed out of her lungs. I was exhausted and I didn’t know what to do but the following night scared the adrenalin right back into me! around 4:00 in the morning her levels dropped again, but didn’t go up with the oxygen, nor did they go up following the nebulizer treatment. They called the on-call house doctor in, who was out of Children’s Hospital Boston, which is where the kids see all their other specialists. He came in sent us down for a new x-ray, which showed no change, he started us on antibiotics again immediately and ordered some blood work. I was astonished and felt like what? we just waisted 4 days for nothing! The levels raised within a few hours and I tried to get Lilly hushed back to sleep. That morning as the daily rounds started the nurses knew I was furious and sent the pedi into our room first. He ran an RSV test which came back positive, ok she does have a virus, but he seemed adamant on getting her home that day. He insisted that getting her up and out of bed would get her oxygen up and with RSV there’s no true reason for the kids to be in the hospital while it clears, sounded awesome right? A light at the end of the tunnel is what it sounded like! Two boys at home, a house surely destroyed, an autistic daughter going on 6 nights no sleep and having meltdowns about wanting her bed, and a Mamma who hasn’t slept in over a week and had been eating out of a vending machine all week! Well the doctor went on his way, and I sat waiting for the nurse to come let us off the machines, but they seemed too concerned that her oxygen levels wouldn’t stay up when they took her off the oxygen machine for only moments at a time. Looking back at that day I realize I knew there were way too many people calling the shots, one doctor does something another changes it, one nurse starts a routine another would change it. I realize my gut was saying she should be on antibiotics from day 1 and I should get her out of here this place is a circus but I had faith in the “professionals”, I was exhausted, and I was doubting my intuition. Later that day Daddy came in and let me go home, shower, rest, cuddle my boys, and refresh myself. I got back into the hospital with real food in my belly, some sleep, and a sense of peace that the kids were ok at home. That next morning after not seeing the prior days pediatrician since the morning before, actually not seeing any one of the doctors more than once over the past week, I was ready to lay into whoever came into the hospital room next. To my delight, it was her pediatrician, finally! I looked at him dead in the eye and said “we are leaving today! one way or another, we are out of here!” he seemed a bit caught off guard, but I wasn’t backing down. He continued on saying she wasn’t ready to get off the oxygen and let’s continue trying throughout the day, hmmm the same thing I’d heard all week from all 7 prior doctors, nope no way was I taking this, and from her own pediatrician! Really? you’re supposed to be the one who knows her, fixes her, understands I have 3 kids with disabilities, knows my overnight back is full of all my prescriptions, and this is what you’re offering me? More of the same B*llsh*t!
I began packing our stuff, insisting I would discharge her myself without medical advice if they didn’t decide on another course of action, and infuriatingly telling them if she’s so sick that we need to spend another night in the hospital it needs to be spent in Boston at Children’s Hospital. At first they wouldn’t agree to a transfer saying her case wasn’t severe enough and didn’t warrant a transfer, but when they realized I was fully prepared to walk out with MY daughter and simply drive the extra 15 minutes into the city and walk into that emergency room, their mood changed and an ambulance was there within the hour transporting us.
I think the following 24 hours were extremely enlightening. I have always favored Children’s Hospital, there the best, the specialists are top notch, I am always comfortable with my kids to care in the hands of that hospital. However for some reason, I left my daughters care and choice of her needs in someone else’s hands besides my own, and that will never EVER happen again.
Within an hour of being at Children’s my daughter was in a new bed, had X-rays, met her new nurse, and her pediatric staff on the floor. The same doctors were always rotating on her floor and they had a list along with photos on the room walls so parent knew who was taking care of their kids. Nurses carried cell phones and within seconds of a machine beeping they were in the room, I could press the call button and my nurse willingly came in (smiling!) I was in awe at the difference. I had just spent a week dealing with nurses who spent more time gossiping at the station then caring for my daughter, and having far more respect for the wonderful women who would come in to clean up and change the sheets then I did for the licensed medical staff.
That day I saw an asthma specialist, had a diagnosis of RSV, Pneumonia, and Asthma. Also had a treatment plan for home, along with a well mapped out course of action and what goals to look for. I was simply amazed. Lilly was off the oxygen within a few hours and stayed off for the remainder of the day. That night Lilly’s oxygen dropped twice once the nurse came in repositioned her, patted her back, and helped her get it back up without putting her back on the oxygen. The second time she only needed it for two hours and the nurse came back in shut it off to check her and it stays up so the oxygen was turned off. When you spend a week seeing nurses take an hour to come in leaving you with a buzzing machine piercing your brain only to throw a mask on the patient and leave not to come in again till the morning, the change makes you have a deep respect for the way these new nurses cared for a floor full of kids. The following day Lilly stayed off the oxygen even through a 4-hour nap so we were sent home, only a little more than 24 hours after being transferred. There is not a doubt in my mind that had I listened to my gut and gone straight into Children’s Hospital, Lilly would have been home within the initial 24-48 hours.
I have spent years advocating for my kids against school systems, educators, insurance companies, etc. but it never dawned on me that I know my kid’s health better than a doctor, till now! I will never again let anyone tell me what my children need without feeling a sense of peace with the course of action again. A mother’s bond is more powerful than anything, even a Ph.D.!