Mycoplasma Pneumonia with encephalopathy

 Thursday, June 4th, Mimi came home from school complaining of a bad headache.  i took her temp and she had a 101 fever.  she didnt have much of a cough, just a small, dry, little cough here and then and it sounded like maybe some post nasal drip.  i assumed it was a sinus headache so plied her with fluids and gave her Motrin if her fever made her feel bad.  while she had a fever, i kept her home from school and had her drink lots and lots of clear fluids, fully expecting her fever to blow over in 2-3 days.  after the 3rd day the symptoms continued.  i knew if i went to the ped they would say to check in after 5 days of fever, so i decided to give it two more days, still thinking this will blow over any day now.  after 5 days of continued symptoms i took her to see the pediatrician on day 6.  they tested her for flu and strep, both came up negative.  they did a complete blood count and her white count was normal.  her lungs sounded fine.  we were sent home with a shrug that she was probably fine and the fever will probably break tonight, but if it didnt just take her in for an xray b/c sometimes the tests they do in office cant always pick up pneumonia.

the next morning, day 7, her fever was still high (103ish, as high as 104.5, her head was hurting, and her cough was starting to sound worse).  so first thing in the morning, i took her to Washington Radiology to get chest xrays and immediately scheduled a follow up appt with her pediatrician.  the xrays showed pneumonia in the lower right lung with a pleural effusion (fluid).  (and totally unrelated, but still interesting, the chest xray also showed that Mimi has a right aortic arch and was told this was something we should eventually follow up with a cardiologist to learn more about).  so immediately the ped had her injected with 2 shots of Rocephin antibiotics and ordered another complete blood count which again showed normal white blood counts.  i asked them to also do a mono check since another worrying symptom was high fevers and sudden very low temp drops, but that came up neg as well.  we were told to come back again the next day for another round of Rocephin shots. (we made the mistake of taking the shots in the legs and Mimi was in so much pain she couldnt walk.  i had to half carry and half drag her 75lbs to the car.  next time we wised up and got the shots in the upper buttocks and she was able to tolerate them better).

we came back the next day for the second set of shots (day 8).  the dr recommended one more day of shots to be sure before moving to oral antibiotics (amoxicillin/augmentin).  so we came back a third day (day 9) for another set of shots and then on day 10 started the oral antibiotics.

GOING TO ER: on day 11 (monday), her temp, which had been holding steady around 100.5, suddenly careened up to 102.5 within minutes and she was crying that her head hurt.  it was around 5:20pm when she told me she hurt and in less than ten minutes her temp had gone up over 2 degrees...so i grabbed my keys, and rushed her out of the house without even stopping to change her from her nightgown and took her straight to the emergency room.  i texted Rob and told him to pick up ozzy from gymnastics (he was at the airport picking his mom up).

by the time we got to the ER mimi's temp had dropped to a low 97, continuing the pattern of high temps and sudden temp drops i'd noticed for most of the week prior.  they ordered more chest xrays and they put in an IV port and drew some blood to run some tests for atypical pneumonia.  the chest xray showed that the pneumonia had spread to the middle lobe of her right lung, so they immediately gave her more rocephin in her IV and a z-pack and decided to admit her to the hospital.  Rob and Ozzy stopped by with some items for us to make it thru the night (phone charger, toothbrush, etc).  after a while they moved us into a private room in the Children's area.  one of the benefits of having pneumonia...you get your own room to contain the spread.  downside is you are not allowed to leave it and walk around.

things from this point gets fuzzy in my mind.  mimi had been laying in bed for awhile and dozed off.  i was up texting Rob when she woke in the middle of the night, around midnight, saying she has to pee.  so i take her to the bathroom.  she seems to be okay, so i offer her some privacy after making sure she is seated on the toilet.  i give her a couple of seconds and call in to the bathroom, everything ok? no answer.  i open the door to see her head slowly dipping down towards her knees as she is sitting on the toilet and then in an instant she is keeling over off the toilet and before i can get to her, she goes crashing head first into the floor and then starts to stiffen and then her whole body starts shaking violently.  i'm screaming her name and there's no response, and i can't move her, i jumped up, slammed my hand on the emergency button and scream out the door for help, some nurses come rushing in, see her having a seizure on the floor and quickly pick her up and carry her to the bed, start suctioning her mouth, giving her oxygen, and then there so many people around her bed i dont know what's happening anymore. 

she looks like she is sleeping afterwards, but then starts screaming like she is in pain and moaning and rocking from side to side, moaning and screaming over and over for almost an hour.  they tell me they want to do a CT scan on her head and a spinal tap to run some tests on the spinal fluid.  they decide to move her from the childrens ward to the Intermediate Care Unit so she can get more attention and needs met more quickly.  they take her down for a CT scan around 2:30am.  she is still out of it and keeps trying to look around, seeming in a daze.  she doesnt say anything and doesnt answer when asked a question.  she shows no recognition of who i am nor does she seem to hear me.  but her eyes are open. 

 around 3 am they prep her for a spinal tap.  by now mimi is talking and she tells me her stomach hurt.  small wonder, she didnt have any dinner and they wont allow her any food because they have to do the spinal tap.  they had difficulty extracting the spinal fluid and it takes a long time and several pokes of the needle.  it is well after 5 oclock in the morning when they are finally finished and mimi is worn out and in pain.  they leave mimi to lay flat on her back to rest for the next 4 hours until it seals back up.  she wants to roll to her side to sleep, but i have to keep making her roll back on her back for the next four hours. i'm dying for some sleep but cant sleep b/c i have to make sure she stays on her back in her sleep.  they come in shortly after the spinal tap to hook up her IV to fluids and some antibiotics (Rocephin, Acyclovir, vancomycin, doxycycline and toradol for pain).  one of the meds causes her intense itching so bad she starts to rip out her hair (vanc?).  i call the nurse and she brings in some benadryl.  finally she is able to falls back into a uncomfortable sleep around 8am, only to be awoken several times by the constant stream of drs/nurses all morning and they tell me they will do an EEG this morning.

It is now fully into day 12 (tuesday).  9:30am. they start marking her head for an EEG to see if she is having any more seizures.  while she is being attached to wires she tells me that she needs to pee.  they cant move her with half the wires on her head and another half still to go, so they pull up a bed pan and slip it under her.  after she voids, i ask her if shes done.  she doesnt say anything and then she slowly lifts up her right hand, arm straight, as her eyes open wide and her mouth suddenly opens very wide too.  her whole body becomes suddenly stiff and then is wracked with violent shakes as she falls into a second seizure.  immediately, staff floods in, she's laid flat, the wires are placed on even faster.  the seizure lasted barely a minute and then she is still and completely silent and seems to be in a deep sleep.  they finish the EEG.  she doesnt respond to anything.  after awhile she starts moaning and crying and thrashing all while seeming to be in a sleep state, not hearing me trying to calm her, not seeing me.  her thrashing causes her wires to get tangled and her IV rips out of her hand.  i called for help and a resident comes and reinserts the IV by poking the thin tube around in the opening still visible in her hand.  she is writhing and crying this whole time.  they tape it down with lots of tape and a board, but her crying and writhing continues even after i leave at 11am.  when i return back later that night she is still moaning and crying.  i watched as she rocked from side to side, holding up her arm with the IV, moaning and crying.  then she would stop and stare off to the side and she'd make these odd facial movements.  then she'd suddenly sit up without being aware of anything except her blankets which she would compulsively rearrange neatly before laying back down and continuing the same movements all over again, laying down crying and moaning and rocking side to side.  i try to talk to her, but she doesnt acknowledge me.  i massaged her legs.

being worried about the IV that was shoved back into the opening in her hand, i ask a nurse to please remove the old IV and start a new one.  she says she'll get someone to do that.  later that night they come in to change the IV.  i help hold mimi still all the while talking into her ear to try to calm her, they moved the IV to the new location on her right wrist, mimi is screaming and fighting them in a semiconscious state but when it's done, she is suddenly peaceful and calm, no longer moaning and flailing.  she is finally able to sleep more comfortably than she had been all day.  i sat by her bed, held her hand, and continue to talk to her as she slept, telling her how much i loved her, how much i want her to be better so i can take her home, how she has to fight to be strong, and then i prayed and prayed out loud so she can hear my words asking God to heal her and bring my baby girl back to me. as she slept i thought i saw her face relax and gentle ever so slightly.  i periodically massaged her legs, feet and belly as she would let me.  then just held her hand.

i stayed there, resting my head on her bed, holding her hand for so long my neck and back hurt.  then Nan showed up.  it was a great relief to see her.  just having another presence around at that moment made the weight feel a little lighter.  Mimi woke up after a bit and started fussing and trying to sit up.  thinking she might need to pee as she didnt go all day while i was gone (almost 12 hours),  the two of us helped her to her feet and tried keep her steady as she walked to the bathroom, pulling her IV with us.  she suddenly started to push at me (without seeming to see me or recognize me) and kept repetitively yelling "Stop it! Stop it!  Stop it!"  in a strange monotone way and with surprising strength kept pushing me away.  she refused to let us help her use the bathroom, pulling her panties back up every time i tried to help her take them down.  so we brought her back to bed and she fell back into sleep.  it was getting late, so Nan left to go to the house.  a little while later, around midnight, Mimi sat up again and started fussing and i saw her hand press on her groin so i asked if she needed to pee.  she didnt answer me, so i called the nurse and this time, the pee was running down her legs, so we got her to the bathroom and she was able to void (still yelling at me to "stop it!")   

the next morning day 13, (wednesday), i was awoken from a deep sleep (i dont remember zonking out on the chair) by a sound.  when i looked up i saw mimi was STANDING by her bed, shuffling her feet towards the door, all the wires and tubing drooping around her.  When i tried to physically grab her and move her back to bed (more Stop it!) she was fighting me so hard, all i could do was scream as loudly as i could for help.  a nurse rushed in and helped me get Mimi back in bed.  and then Mimi yelled at me very clearly, "I have to go to the bathroom!"  Her first sentence since her seizure.  i took her to the bathroom and after that she fell asleep.  later she woke up and was able to say a few more words,  albeit slowly.  she was hungry she said, but because she had an MRI under sedation scheduled they wouldnt let her eat.

the MRI was to see if there was any brain structure changes from the seizures.  a family support member came to the room to talk to us and to give Mimi some idea what test they were going to do. she showed Mimi a pic of a MRI machine and talked about it with her.  then later they wheeled her bed to the MRI machine.  by the time we got there Mimi was looking worried and confused.  the family support lady came over again and Mimi didnt recognize the woman and acted like this was all new information.  she had already forgotten talking to the lady earlier in her room.  they gave her a sedative in her IV to make her sleep and she was out almost instantly.  then Rob and I had to leave the room.  it took awhile for the MRI, at least an hour.  then they called me to sit with her in recovery when it was over.  i wiped her with a cold wash cloth and kept calling her name to wake her.  she slowly came to.  when she was showing she was sufficiently waking, they wheeled her back to her room.  The MRI showed no permanent brain damage, looked okay.  they also had a positive result for atypical pneumonia, mycoplasma pneumonia and are able to take her off the vancomycin and the acyclovir.  leaving her with just the Rocephin and the doxycycline in her iv.  around 3pm that day, i left Mimi with Rob to go home and shower and try to catch a quick nap before coming back to the hospital.  

that evening, i tried to spend the time talking to her.  she spent most of the time awake, but i noticed periodically she would get quiet and her eyes would glaze over.  or she would look to the side and make odd facial tics.  once while i was reading a page from harry potter, she burst out laughing.  it was serious part in the book and the laughter was out of the blue.  i asked her and she seemed confused about it and almost embarrassed that it had happened.  when i told the attending dr later that day she said it sounded like she could still be having little seizures.  glazing eyes and bursts of laughter are behaviors that indicate small seizures are happening in the brain.  so she said they would do another EEG the next day.  i mentioned how Mimi seemed more alert and with it in the morning and that it seemed more noticeable at night when she was tired, so they also ordered a 24 hr EEG as well. 

Day 14 (thursday).  Mimi is more alert and awake.  They do an EEG on her early that morning.  her hair is a knotted mess, but the lady doing the EEG was really nice, letting me fix Mimi's hair a little to get out the knots before her head was covered with more glue for the wires.  after she gets that EEG, the PT and OT come by to do a few things with Mimi.  she seems to be doing everything fine.  Nan comes by later that day before heading back.  Mimi is able to talk and eat.  i dont notice any more tics or odd behavior from her.  some time at 3pm, they come to set up more wires for another EEG, this time the wires stay on for 24 hours and there's a video monitor set up.  it's a loud smelly process getting these wires on with glue that sets like Crazy Glue.  smells so bad.  we get thru the night and into the next day and i dont see any more odd behaviors.

Day 15 (friday).  the EEGs all look good. they tell us that she can go home possibly today with oral antibiotics (Vibramycin/doxycycline).  she is discharged from the hospital around 3:30pm. i can't wait to get her home and wash out her hair.  

once we are home and washed she seems to be happier.  she has bouts of exhaustion still and if she is upright too much she has bad back pain around the area of her lumbar puncture.  it takes awhile for me to convince her to lie flat periodically during the day to prevent the backache from becoming so bad. 

after 5 days on the oral doxycycline she says her throat is starting to itch.  the infectious disease specialist said it was okay to skip the final dose but to make note of this reaction if in the future she should ever need doxycycline again to have it administered in a hospital setting in case it causes anaphylaxis.