Saturday, March 28, 2009

  • Brookelyn awoke from a nap with a fever, gave Tylenol; later, she vomited, stopped formula, started Pedialyte.

Sunday, March 29, 2009

  • Continued Pedialyte and Tylenol, seemed to be getting better all day

Monday, March 30, 2009

  • Very high fever accompanied by a clenched jaw, lethargy, and a moan-like cry that we will never be able to forget
  • Would not take Pedialyte or formula
  • Rushed to Riverside Hospital ER, blood and urine taken, diagnosed with urinary tract infection
  • ER paged Brookelyn's pediatrician, no response
  • ER doctor gave an antibiotic, but he was not comfortable with the way Brookelyn was acting so he ordered a CT scan and admitted her to the pediatric floor, who continued to page Brookelyn's pediatrician, still no response
  • RN thought she heard a murmur in Brookelyn's heart, pediatrician decided to come take a look at her and immediately ordered her to be airlifted to University of Chicago
  • Ordered an echocardiogram and an electrocardiograph to check her heart
  • University of Chicago would not accept her, decided to have them try to get us into Loyola University Medical Center
  • Helicopter was sent over right away and Brookelyn was soon in the air, the flight crew called in to Loyola's Pediatric ICU and relayed her symptoms to the doctors
  • Loyola cardiologist reviewed the scans from Riverside and found nothing wrong with her heart
  • Spinal tap, or lumbar puncture, confirmed Bacterial Meningitis
  • Put on a ventilator, to help her breathe, sedated, and put on pain medicine
  • Blood transfusion was done, because her hemoglobin levels were low

Tuesday, March 31, 2009

  • Central line inserted into one of the large veins in her leg
  • Another CT scan showed she had suffered multiple strokes-most likely occurring between arriving at Riverside and being transferred to Loyola
  • developed a seizure disorder, seized on average nine to twelve times a day.
  • Reason for her seizures was a disorder called SIADH, syndrome of inappropriate anti-diuretic hormones- her body could no longer regulate the amount of electrolytes (sodium), gave her IV fluids high in sodium

Beginning of April, 2009

  • Placed NG tube for feeding (through nose)
  • Problems with the central line drawing blood
  • Had a blood clot in her left leg
  • Placed another central line into a large vein in her neck
  • Rewired central line after unable to draw blood from neck
  • Unable to get the line rewired, central line placed in her right leg
  • Ultrasound of her neck done to look for a clot, there where no signs of a clot
  • PICC line, peripherally inserted central catheter, placed into her left upper arm and runs all the way through her shoulder and through her chest and stopped just before it got to her heart, in an operating room with the use of an ultrasound camera as it is a very sensitive procedure
  • Started stepping down the ventilator and letting her start trying to breathe on her own
  • Lowered her sedation, causing withdrawal symptoms
  • CT scans and MRIs every few days
  • Neurosurgery had told us she has some extreme signs of inter-cranial pressure, insert a sub-dural drain, which means to make an incision in her scalp and drill a burr hole into her skull and then take a scalpel and cut the dura and place a drainage tube over the brain and under the dura

Second Half of April, 2009

  • Drain was left in for a little over 2 weeks time and then removed
  • Hydrocephalus diagnosis, would need a shunt placed at some time in the future
  • CT scans and MRIs showed that her inner ears had some significant damage, mastoiditis diagnosis
  • VCUG test, voiding cystourethrogram test, diagnosed her with kidney reflux and prescribed a prophylactic antibiotic, will need possible kidney valve surgery in future
  • Failed swallow test, Upper GI study came back ok
  • G-tube, Gastric feeding tube placed directly through the abdomen
  • Moved from the PICU to the IMC which is an intermediate care department where she would still be hooked to monitors
  • In the IMC for two days, on the third day showed signs increased intercranial pressure, stopped her feeds and pumped her stomach out for surgery
  • Ventriculostomy performed, EVD, external ventricular drain, in place for 2 weeks
  • Hooked up a transducer to the line
  • Normal treatment is only ten to fourteen days, but her treatment had been extended to six weeks due to the severity of the infection and the complications which have occurred along the way

May 2009

  • Hypertensive
  • Dumped thirty cc's of CSF in about sixty seconds, which is very dangerous as a child her age is only able to produce fifteen cc's an hour, caused her ventricles to suddenly shrink and allowed her brain to shift which tore some veins that go to her brain, hemorrhaging
  • Sedated again for a week
  • Test for hearing, diagnosed her as deaf
  • Vision test, unable to tell if she can register what she sees, but they can tell she can see
  • Placed a VP shunt, ventriculoperitoneal shunt
  • Four month vaccinations given
  • Placed in rehab facility at Marianjoy in Wheaton, worked on breathing exercises and transitioning

June 2009

  • Suspected seizure activity, transfer back to Loyola
  • CT scan, then MRI showed spot on back of brain, determined to be blood clot, left to dissolve on its own
  • EEG, reviewed by the pediatric neurologist he said it showed some abnormal spikes that were seizure activity, and diagnosed her with a shudder disorder, increased her anti-seizure medicine
  • Transfer back to Marianjoy rehab hospital
  • Adjusted her medicines again and her agitation seemed to be a little more under control
  • Start moving her arms a very little bit and would accept a pacifier in her mouth and not gag
  • Shudders had stopped and no more seizures until she began to do something that looked similar to a startle
  • Transfer back to Loyola, blood drawn, and admit
  • Diagnosed with Infantile Spasms, treated with Prednisone
  • Transfer back to Marianjoy
  • Continued to have many seizures
  • Re-admitted to Loyola
  • 24hour EEG showed she was definitely still having infantile spasms and hypsarrhythmia, a type of seizure that causes scattered brain wave when she is asleep, introduce Topamax
  • Marianjoy would not accept us back
  • Decided to go home and began to get our medical supplies

July 2009

  • On our way home
  • Appointment with her neurologist, sustained release Topamax hoping it will help a little more with the infantile spasms, and started tapering the steroids
  • Surgery to switch the PEG tube out for a Mic-Key button, hose is detachable from a small port about a 1/2 inch thick and about the size of a dime
  • MRI showed the spots of infection were almost completely gone, but the ventricles where still too large
  • Turned down setting on her shunt to try and let the ventricles shrink a little more
  • As her Prednisone dose tapered down, her spasms started to get worse, pursing her lips and shaking between spasms

August 2009

  • Re-admitted to Loyola
  • Start a ketogenic diet, a diet that consists of eating no carbohydrates and only fats
  • She went into a somnolent state, which is like a coma, but she could still breathe on her own for a week and a half
  • On her own she started to wake up little by little and she was soon up for around three to six hours a day
  • Having a lot of problems with seizures, one lasting three hours, issuing a rapid response call
  • Compromised breathing, her heart rate was over 220 and her respiratory rate was over 90
  • Nose trumpet put in by a respiratory therapist
  • A few days later, same thing happened, this episode lasted two hours
  • Scope down her throat came back clear
  • Another continuous EEG, diagnosed seizure activity along with autonomic storm, given IV Ativan
  • Problems keeping her food down
  • Upper GI study showed that she wasn't digesting
  • Gastric emptying study, showed that she was digesting less than 1mL an hour
  • Gastric Jejunum Tube, GJ Tube placed through the same hole that her G Tube was placed, but it goes through her stomach into the small intestines and rests into her Jejunum

Meeting with Medical Team

  • The top part of her brain is most likely damaged beyond recovery
  • The brain stem, the part of the brain that controls your bodies' basic functions, may be the only functioning part of her brain
  • Regaining motor skills or ever being able to walk or talk may no longer be a possibility
  • If she were to ever get pneumonia or catch the flu, or have a seizure they can't stop they would need to induce a coma, in which case, chances are she would not wake up
  • Decision to sign a do not resuscitate/do not intubate and the decision to pull the plug or if we want her to pass naturally
  • Discharged to home

September 2009

  • Three weeks at home
  • Scheduled to have her GJ Tube replaced outpatient
  • Feces coming from around her GJ Tube after discharge from Loyola IR lab
  • Took her back in to the OR, found they had perforated while placing her GJ Tube, They then proceded to plac a tube into the hole and plug her colon the best they could till they could get her into the OR in the morning
  • Admitted to the hospital
  • Gagging a lot, then with one big gag she started to vomit feces
  • Oxygen saturations started to drop and got as low as 50%, called another rapid response
  • Hooked up a foley catheter up to a gravity bag, that helped pull anything out of her stomach as it filled
  • Laparotomy to pull her colon out and suture the hole in it closed and placed a tube directly into her small intestine for feeding
  • Samples of the fluid from her abdominal cavity and a gram stain test showed bacteria
  • Externalized her shunt tubing so the bacteria would not go back up the tubing and infect her brain again
  • Admitted to PICU, on the ventilator, but she was taken off it the next day with little trouble at all
  • Ten day treatment of antibiotic
  • Trouble keeping her oxygen saturation high enough
  • Chest x-ray showed a slight Atelectasis, a condition where some of the air filled sacs in your lungs don't fully inflate or become completely deflated, put her on oxygen and scheduled Albuterol treatments and chest physical therapy multiple times a day
  • Repeat chest x-ray and the Atelectasis seemed to have almost completely cleared after only two days of treatment, but she would continue to get Albuterol treatments and chest pt as long as she is bed ridden

Wednesday, October 14, 2009

  • Brookelyn began to smile! There was nothing that could have been more uplifting!

October 2009

  • J tube became plugged and needed to be changed
  • Neurosurgery and general surgery decided that it might be best to wait a full four weeks before re-internalizing her shunt

November 2009

  • Five weeks after the laparotomy, shunt was reinternalized
  • While in OR, the most recent spinal fluid sample, which had since cleared up of any bacteria from the bowel perforation issue, had bacteria in it. They decided to reinternalize and start an antibiotic treatment and hope that it would clear up.
  • Another ten day antibiotic treatment
  • After the internalization, behaving strangely, having a lot of abdominal pain and just seemed to be very uncomfortable and fussy
  • CT scan of her abdomen and head, came back normal
  • Shunt tap came back clear
  • A few days later discharged to home again, and just in time for her first birthday!

December 2009

  • Started to have fevers and just seemed uncomfortable
  • Pediatrician took a urine sample and admitted her to Loyola
  • Diagnosed with urinary tract infection and drew some blood to test
  • Started her on antibiotics
  • Ultrasound of her kidneys
  • Gagging every few minutes and sore in her abdomen
  • Abdominal CT to look for an abscess, came back clear
  • An attending peds doctor noticed she didn't have any bowel sounds
  • Shunt tap came back positive with staph
  • Surgery to remove her shunt put in an EVD
  • Started on appropriate antibiotics
  • On ventilator for a few days
  • The lab results from the shunt in her abdomen came back positive along with the valve itself, but the tip of the catheter that was in her brain never grew any bacteria
  • Three week antibiotic treatment
  • Surgery to reinternalize again, on New Year's Eve 2009
  • Put the shunt back in, they placed it on the opposite side of the brain than it was originally on

January 2010

  • Discharged home
  • Started therapy

May 2010

  • Used a stander, a device to help her stand in an upright possition to help he bones and joints form correctly
  • May 23, 2010 Brookelyn and her sister Ashlyn are baptized

June 15, 2010

  • PICC line removed
  • Subclavial central line placed

July 2010

  • Started having problems with her new central line
  • After many trips back and forth to Loyola it is decided to try to rewire the line in the OR and they surgery day is set
  • Rewired central line