Bucks For Brookelyn - Story

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