Going to the ER once a month isn't normal, but it has become our normal. Niki surpasses the temperature threshold (101.5) at least once a month, but I got used to everything turning out okay. I guess I got cocky because her last ER visit turned out to be the real thing. In case you didn't know, Niki got admitted to the hospital recently.
And God gave me a serious reality check.
Monday, June 15th started out just like any other week. Niki had her monthly check up with Dr. Awesome and everything was going well. She still had a residual cough left over from Memorial Day Weekend, but Niki's lungs were clear so Dr. Awesome didn't think much of it. Neither did I since coughs can take several weeks to resolve. As always, Niki's INR and FVII levels were stable. My girl was full of energy and spunk during her visit. She walked around Hematology like she owned the place.
Her mood on Tuesday, June 16th seemed to follow suit. She had a good day in daycare and was in a really good mood when we came home from work. Everything seemed fine -- just another day in lion taming -- until 10pm. One minute she was calmly laying down with her Daddy and the next minute she was shivering uncontrollably and crying. I'll never forget the panic in her eyes.
Of course, I immediately thought about Ethan and his seizures.
Niki didn't look like she was having a seizure, but Ethan taught me that babies don't seize like adults do. Everything happened so quickly. We gave her factor in case she had a head bleed and I called on-call Hematology right away. I could feel adrenaline rushing throughout my body as I administered her factor. John was holding her, trying to calm her down. Her skin was warm, but her hands and feet were purple.
It was scary as hell.
The shivering episode lasted about 10 minutes and her panic quickly subsided and turned into extreme lethargy. Niki sleeps with her eyes slightly open so I could see her eyes rolling back and it scared me. Unusually enough, her temperature was normal. The on-call Hematologist wanted to rule out a line infection so she gave us the go ahead to take Niki to the ER. Apparently, the sudden onset of of chills could indicate that a fever was about to spike.
As luck would have it, we got pulled over on our way to the hospital.
John hurriedly explained to the officer that we were on our way to Kaiser SF's Emergency Room for Niki. The cop pointed his flashlight on Niki (who was sleeping and still extremely lethargic) and then he looked at me. The cop then told us that he would let us go "without a write up". Niki looked pretty sick, but the officer still gave John a brief reminder that "any kind of tint is illegal on a vehicle." Fucking cops.
We were about 1/2 way to the hospital when Niki suddenly woke up and vomited Linda Blair-style all over herself. What worried me the most was the fact that she was too weak to react to her retching. She spewed out a huge amount of vomit and went back to sleep. I didn't want to unbuckle her so I tried my best to clean her up as she still sat in her vomit. I managed to strip her naked and clean her up by the time we got to the hospital.
It's hard to believe she went from this...
To this in less than a day...
She mustered up enough energy to fight with the nurse as he put the pulse oximeter sensor on her toe. (She hates that thing.) The nurse checked her temperature and it was still normal. Niki must have "vomit out all the sick" on our car ride. By the time the doctor came in the room she was acting perfectly fine.
After a few hours of hanging around in the ER, the doctor finally sent us home. No lab work up. No IVs. Not even a urine sample. The doctor reassured us that it was probably just a stomach bug because her temperature remained normal. He advised us to increase fluid intake and sent us on our way. John and I got home by 4am.
I went to work the next day. There's no time to rest when you're a Mommy.
Niki was perfectly fine during the day, but she would vomit once every evening thereafter -four days on vomiting once a day. We kept her hydrated with Gatorade and reduced her milk intake to prevent stomach irritation. Her appetite was a bit decreased, but we believed the doctor when he told us that Niki had a "stomach bug". John and I honestly didn't think much of her yacking.
Flash forward to Saturday, June 19th at 10am -- Niki woke up shivering again. She also threw up, but didn't react much to the vomiting. She fell back asleep, but it was different this time. Her lips and feet were ice cold and her skin appeared mottled. We were all very worried.
I took a picture of her skin so I could show the doctor.
Her temperature was ever so slightly elevated (99.2), but we still thought it was a stomach bug so that gave us some temporary reassurance. I called Pediatrics instead to see if I could get an urgent care appointment for Niki's "stomach bug". I had a telephone visit with a pediatrician almost immediately. (This was the same doctor --Dr. N-- that saw Ethan the day before he had his head bleed. I felt confident enough to speak with him over the phone.) Niki was very sleepy and although her lips weren't discolored, they were still very cold.
I was hesitant to go back to the ER because they didn't do anything the last time we went there. Actually, the ER doctor made us feel silly for coming in. I let the Dr. N know about our recent experience, but he told me to take Niki to the ER again for an evaluation. I called the on-call Hematologist so she could notify the ER that we were coming. Then John and I started packing up Niki's baby bag and medical supplies so we could head off to the ER. We also prepped the boys and informed them that we were going to take Niki to the ER. All the while Niki was still sleeping. Just as we were about to leave, we felt her skin and she was burning up.
Less than an hour after Niki temperature was 99.2, it spiked spiked to 105.4!
My best friend (K) just so happened to be on her way to pick up the boys. She and her fiance graciously offered to take the cubs to the AT&T Park carnival a few days prior. It worked out perfectly because we didn't have anyone to watch the boys on such short notice. They came minutes after we rechecked Niki's temperature. (Thank God for K & J!) We set off for the ER as soon as the boys left and my SIL (A) came with us to help.
When fear hit me, it hits me hard. And I was fucking terrified.
Most of the time I'm able to maintain my cool, but that day was different. The triage nurse's poker face sucked and I could see the worry in her eyes. Niki was really lethargic by the time we got to the ER and to top it off, she was sweating profusely. Oddly enough though, her skin was still pink (it wasn't mottled any longer) and she had no signs of respiratory distress. I got choked up the minute I saw her vital signs though -- O2 saturation 92% and pulse was 230. I know your heart rate speeds up when you have a fever (to cool your body off), but her pulse still didn't sit well with me.
Something was seriously wrong with my baby girl and it happened very quickly.
I didn't know what to make of her symptoms, but I prayed that she would be okay. In case you didn't know, you can die from central line infection. The fact that her fever spiked worried me. All I could do was think about her cold lips and feet. I was holding Niki in the triage room and I felt myself start to tear. I blew a quivered breath up toward my eyes to stop the tears from falling.
That was not the time to lose my composure.
Niki looks so much like Ethan when her eyes are closed. She wasn't on a ventilator or even remotely close to knocking on death's door, but my imagination was running wild. She was way too sleepy -- too sick -- for me to NOT worry. Being a part of the "moms who lost a child sisterhood" has given me great knowledge on all the horrifying ways that kids can die. These dark thoughts attack me when I'm scared. This was the first time -- in a long time -- that I felt like I could possibly lose my baby.
I don't think I'm over reacting when I think of death in these situations. Tell me how you would feel if you were me....if it was your kid that died or your kid that was very sick. The horror of losing a child has become a reality for my family already.
I'll NEVER think we're untouchable after that experience.
They got Niki into the exam room quickly. The nurse gave us an ice pack to help bring Niki's temperature down. We even wet Niki's hair and put cool washcloths on her forehead to buy time until the doctor came in. Thank God he didn't make us wait long. The doctor took one look at Niki and ordered blood cultures, a urine culture, bolus IV fluids, and a Tylenol suppository. He listened to her lungs and told us that it sounded noisy. (Niki's lungs were clear on Monday!) The doctor ordered a chest x-ray to check it out, but he theorized that Niki had either pneumonia or a line infection. Worst case scenario, he said that she could have both. Niki started to be more responsive as her temperature slowly cooled down. She was drinking again, but she was still completely wiped out.
After hours of waiting, the Pediatrician came in an told us that Niki was being admitted. Her WBC came back very high which indicated an infection of some sort. As luck would have it, a Pediatric Infections Diseases MD was working the floor that weekend so Hematology decided that it would be best for Niki to be admitted in San Francisco instead of being transferred to Oakland Kaiser. K kept in touch with me during Niki's ER stay. She sent me pictures and reassured me that the boys were having a blast. K & J even dropped the boys off to my mom's house once we found out that Niki was going to be admitted. It was so helpful to feel like I didn't have to worry about the boys. John and I often feel torn when we have to leave the boys behind to take care of Niki in the ER. I felt relieved knowing that the boys were enjoying themselves.
Niki's was admitted to the 7th Floor Pediatrics Unit. The Intensive Care Nursery coordinated a private room for us to spend our last moments with Ethan and it was on THAT floor. I hate the 7th floor. That unit holds no good memories for me.
7th Floor Pediatrics
The room Ethan died in is located at the far back corner of the Pediatrics Unit. The room is used to store extra isolettes, beds, and cribs now. I'll never forget this number.
KP's newest guest...
Ethan and Niki's Room...
The hall...
Ethan had his spinal tap done in there...
I felt like I was on a bad trip down memory lane. The only upside to these unfortunate twists of fate was the fact that Niki distracted me from entering total depression. I really fucking hate the memories associated with that floor!
After a few hours, Niki was starting to act a little more normal. The scariness subsided after she got her first round of antibiotics and the Tylenol fully kicked in. Niki was still febrile (101+), but she got some of her spunk back. After hours of sleeping, she woke up with a sudden burst of energy. The nurses encouraged us to let her walk around for a bit.
After a few hours, Niki was starting to act a little more normal. The scariness subsided after she got her first round of antibiotics and the Tylenol fully kicked in. Niki was still febrile (101+), but she got some of her spunk back. After hours of sleeping, she woke up with a sudden burst of energy. The nurses encouraged us to let her walk around for a bit.
My spunky girl...
Tiny hospital socks for a tiny patient...
Her gown was backwards for a good reason - her Broviac
Niki's condition really improved compared to how she was earlier that morning. My sister and her husband came by to visit and marveled at how well Niki was doing considering the circumstances. My sister is a Clinical Microbiologist so she schooled me on all sorts of possibilities concerning Niki's potential line infection and treatment. Niki was social again too. She even waved at the SFPD officer that was on 24-hour watch right outside of our room. John and I overheard the officer's briefing each other during shift changes and it turns out that one of the kids on the floor was a child abuse case. I guess the cops weren't as HIPAA conscious as the nurses were because they talked about the baby when our door was open. She was admitted for abuse when she was about 2 months old. I wasn't trying to listen, but it's hard not to, ya know? The poor thing. She was an adorable little baby too -- just about Niki's age. And, it broke my heart.
It's a shame when children are in the hospital, but it's an even bigger shame when that hospitalization could have been prevented.
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