I haven't blogged in a while. Adjusting to two with a touch of the PPD had me feeling more introverted. After a few weeks of medication, I was starting to feel more like myself. I started to make more of an effort to get out and about. Zoo, Please Touch Children's Museum, library story time, playgroup, trips to the store. I can draw a map of everywhere we've been in the past two weeks... it's fairly limited. And I will now look at all those places with so much caution. Thanks to the past six days, I have been transformed from a "it will build his immune system!" mom to a "where the hell is the Purell" mom.
A week ago today, Marty went from his happy little self to being fussy and inconsolable. I knew he was getting sick. His fever went up that night to 100.3 at 4:00 am. We decided to give him Tylenol.
FYI: they really say not to give tylenol to a baby this age for a reason. Call your doc if this ever comes up. The recommendation is to go to the hospital if the fever is 100.4 or above if the baby is under 8 weeks. This just seemed so extreme. I decided to watch and wait.
Throughout Wednesday, he slept a lot and his fever stayed below the 100.3 mark. In the afternoon, I read a news article about a baby who died because his (neglectful) parents didn't take him to the doctor. I decided to take him in. The doctor sent me home and said to take him to the Children's Hospital of Philadelphia if it went to 100.4, and of course, it did.
I really thought it was nothing-- a cold coming on or something. He had no other symptoms but this slight fever and his fussiness.
The CHOP ER is a pretty terrifying place at night. The waiting room is in a multi-story glass atrium, and bored, sick child whines and screams bounce and reverberate.
They rushed us back and the doctors and nurses came in after maybe a 5-minute wait. I'd settled in with a book, expecting a typical ER wait. First was the catheter. All that screaming and they barely got a drop. Four tries before they got a blood sample. He was scared, fevery, and being poked and prodded. Then the lumbar puncture. This was actually the easiest part-- he fell asleep while they were taking the fluid.
The doc came in and told me the extreme unlikelihood that anything was actually wrong while we waited for preliminary test results. They were looking for bacteria in the blood and urine, and checking the white blood cell count in the spinal fluid.
Waiting. The nurse offered to sit with Marty if I needed a minute. I went out into the hall and heard voices of children wailing in pain. Dozens of sick, hurt screams. The worst sound I've ever heard in my life.
An hour passed and the fellow tells me that a normal white blood cell count in the spinal fluid is 8 and under. Bacterial meningitis would have counts in the hundreds. Marty had 55 white blood cells in his spinal fluid, leading the doctors to believe that it was likely viral meningitis.
They brought us up to a room at 1 am. A large cage stood in the middle of the room. The turquoise, polished floor reflected harsh procedure lights. The nurse came in with a gown and a mask, and explained that Marty was on contact and droplet precautions. We were put in a special room behind double doors that prevents air circulation. I'm still in denial at this point that it's serious.
Days go by. A blur of vital signs and spiking temperatures. 102.7, 104.4. Tylenol, cooling blanket. IVs, antibiotics, beeping monitors, screaming fluid pumps. His temperature goes down, then up. Marty crying in pain, sleeping too long. I pumped like crazy, he nursed for shit. Feeding tube. His breathing was labored, his little chest and neck pulling in. Doctors rush in. Specialists. His heart rate was sky high. Three days of this.
His test came back that he picked up an enterovirus. Bastard of a bug. It was explained to me that babies systems are big sacks an all their organ systems are permeable. The virus got into the fluid surrounding his brain and spinal cord (the meninges), causing the viral meningitis. Eventually, bacterial infections were ruled out.
Once he started having more wakeful periods, the nurses noticed that he was having staring spells, where he'd sort of look at nothing and wouldn't react. A neurologist came in and decided he was fine. Then another neurologist decided to give him a 20-minute EEG to be safe and everything looked fine.
Yesterday. We got back from the EEG and the doctors cleared us for discharge. Everyone bid is goodbye at rounds. I posted on Facebook that we'd go home. Kyle came by and I packed up all our stuff.
The doctor came in. Neurology changed their mind and decided to do a 24-hour EEG. Apparently a staring spell from the day before happened at the same time as a bradycardia event. We were here for one more day, and honestly, it's been the hardest day so far.
They super-glued electrodes to my little baby's head and wrapped him in gauze. I've been on camera with him for 18 hours now (the neurology department is seeing a lot of nipple). And we wait. I really hope my baby is okay. In all this trial, this part has been the worst. Waiting to find out if this illness hurt my perfect little baby's brain.
I don't want this to be our life. CHOP has treated us very well, but I want to take my healthy, normal baby home.
UPDATE: I'm sitting on my couch with my healthy baby. The nightmare is over and neuro gave him a clean bill of health. Man. I am done. DONE. with health scares and these kids. Parenting will break your heart and then explode with love.
Here are some photos from the last six days. I will let them tell their own story:
Love this guy!
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