Doctor, Doctor, Doctor, Doctor…

Lily had many doctors and many other specialists in the medical field-it actually feels narrow to use the word many-maybe multitudes or plethora or tremendous amount- something really big would be more accurate.  Growing up around hospitals, with my dad, our multitude of medical professionals was normal to me…not normal to the hubby or anyone outside of the medical field, though, so I was always explaining.  There was the head of the neonatology department, the entire neonatology staff, at one point an ENT, an army corps full of nurses, the feeding specialist, once we left, we had our follow-up neonatologist, the physical therapist, eventually a pediatrician, the sleep specialist, and many others who I’m sure I’m forgetting but who crossed our path at some point.  Once we were finally discharged, we had neonatology appointments, pediatric appointments, physical therapy appointments, and sleep specialist appointments.

I think that before I launch into what will, most likely, be termed a tirade, I should state that I really loved all of the neonatologists.  Follow up appointments with Dr. Pane, running into Dr. Manginello and the rest of the staff…it was a joy.  They were always positive and progressive and, honestly, familiar.  They praised Lily and they praised my care of her.  They saw Lily as a resilient little miracle, and seeing my child through their eyes was a delight.  I also love Lily’s pediatrician, Dr. Muntaneu, who is very close to my age and currently pregnant with her first child.  She is always impressed by Lily’s progress-she’s positive and delightful and human.  She treats me like I’m the expert and she never talks down to me, even when my question is a bit on the stupid side.  I am in love with Lily’s physical therapist, Lisa.  To this day, I look forward to Lily’s physical therapy appointments because I know that the half-hour will be filled with encouragement and glee.  But this post isn’t about all the people I love…this post is about my extreme dislike for one of Lily’s doctors, one who will remain nameless because I don’t think it’s right to eviscerate someone on the internet without her having the ability to defend herself.  She was Lily’s sleep specialist-she was also the first person who I ever wanted to have a big dick contest with because I would have slapped her into oblivion.

Dr. Pane, Lily’s neonatologist, gave us "permission" to have Lily sleep on her belly because of her awful acid reflux...her exact wording went something like "there is a higher risk of her dying from aspirating while on her back than the risk of dying from SIDS," which wasn't reassuring either, but at least Lily could sleep comfortably. Plus, she was on a monitor that freaked out if she stopped breathing! The pediatrician agreed with Dr. Pane (with warnings to be extra cautious and to still encourage “back to sleep”), the physical therapist wasn’t happy about it either, but the sleep study doctor who controlled the apnea monitor nearly had a heart attack when I explained this to her and she went on a half-hour-diatribe about why what I was doing was wrong. AND she tried to teach me about child rearing and SIDS.  This was the first time I met the sleep study doctor-she hadn’t been with us at the hospital the past 3 months. She had a written record, Lily’s chart, to refer to, but she knew nothing about me or my child or our circumstances. I wanted to be like, “Fuck you lady, I've been through hell,” but I held my tongue and nodded.  Maybe she should’ve come to my house and listen to my tiny baby scream and vomit while lying on her back.

Visits with the sleep doctor were sporadic…she would waltz in at the end of the appointment to tell me what a bad job I was doing, or how many “episodes” Lily had according to the equipment.  And it didn’t seem to matter how often I told her that the machines were going off falsely, or that we weren’t using them as frequently…no, the machines were right and I was wrong. The sleep doctor’s nurse was really nice, though.  I liked her a lot.

After weeks of weaning without incident, Lily was officially off of oxygen on November 12-I remember the specific date because it was the day after my birthday and we said it was the best present ever.  Plus, who the hell forgets when their 11-week NICU bound child goes off of oxygen! Our last neonatologist appointment was November 26-it was our goodbye visit and it was bittersweet.  We loved Dr. Pane and all the doctors in the NICU, but we were so happy to see how far Lily had progressed-we had made it over a huge hurdle. We had an appointment with the sleep doctor on December 7 to do a download and to schedule the sleep study...according to the sleep doctor, Lily would need to be hooked up a ph probe and about a million wires to be monitored for a 5-6 hour period in order to get rid of all her equipment.  The doctor didn’t schedule the study-instead, she scheduled a follow up appointment and said that her office would call our insurance company to get permission for the sleep study.  I was confused, but I didn’t question it.

We finally received permission from our insurance company 2 weeks later, and they said a copy of the approval was sent to the sleep doctor’s office-I should wait to hear from them shortly about scheduling a date. A week went by and I didn't hear from them, so I called their office and left a message with the nurse (who I love) that we got permission. When I spoke with her, I asked if the sleep study was mandatory, and she said “No, you don't HAVE to do it,” and that we could return the equipment AMA (against medical advice), but she'd have the sleep doctor get back to me. What followed was three days of back and forth because the FUCKING IDIOTS at the doctor’s office-although I think it was just the doctor because the nurse was unbelievably sympathetic and even sorry whenever she called-wanted Lily to do the study, which was now 8-10 hours-not the previously mentioned 5-6 hours, or to be monitored for 14 days without oxygen at home...When I explained we hadn't used the monitor since our December 7 visit and that Lily hadn't been on oxygen since November 12 (so the download at the December 7 visit would've covered the 14 days) I was told that I was incorrect. That according to their records, the oxygen didn't stop until November 26. We had a little back and forth, I used some strong words and strong language, and a few phone calls later, they apologized for the confusion.  In all this back and forth, I never once spoke with the doctor.  She never got on the phone, never called me, never asked how my baby was doing…she just sat in her office making her nurse do all the dirty work, letting her nurse deal with my rage.

At the time, I was infuriated-how dare you toy with me and my child, making me feel incompetent and idiotic when it was your poor record keeping and inability to get to know your patients which really caused the confusion.  How is it possible that your office never contacted me when they got the approval?  The machines were in my house for nearly a month longer than they needed to be, creating more bills that we didn’t want to deal with.  Where did you go to medical school?  Why didn’t the alien overlords implant a sensitivity chip when they placed you on Earth?  Could you even pick me out of a line-up?  I know you couldn’t place my child, because you’ve never looked at her-not when she was rolling around your exam table, or sitting on my lap having a bottle.  This was the first time in my life I ever considered doing anything AMA (against medical advice), and it’s because my gut kept telling me that something was not right.  This doctor was not right.