A little pick me up.

If I've said it once, I will say it a million times.  The fact that we are so lucky to have Nate in our lives is truly a lifesaver to us.  Its possible that this child may never know how much he has lifted us up through the hardest part of our lives.  Since that first day Finley was in the hospital and we came home that night and we hugged him so tight,  to a day later when I was on the phone with the insurance company trying to pre-cert my hospital stay for my delivery, bawling my eyes out, and Nate is upstairs yelling, "I POOPED ON THE POTTY MOMMY"- for the first time ever mind you- in the middle of that very difficult call.  Nate has been there for us.  Lightening up our moods, making us laugh, and letting us squeeze him tight.  And so, after a long day at the hospital yesterday, I snapped this (I know he's going to kill me when he grows up)...

Mike and I always say he is such a little man - the things he does, his mannerisms - they are so little-manlike.  He'd been in the bathroom for a long time at this point so Mike when in to check on him and this is what he found.  When I opened the door to snap a quick picture - I snapped it at precisely the right moment (note the smile) because he was really upset with me and said "MOM!  I'm trying to poop!"

Fortunately for Finley, things started to slowly improve in the afternoon yesterday.  The results of her urinalysis came back positive for bacteria and white cells which are markers for a Urinary Tract Infection.  There is a third marker, nitrites, which weren't present, so they want to wait for the results of the culture to officially diagnose a UTI.  (As a side note - UTIs are one of the complications possible with surgery since she had a Foley catheter in her bladder for four days). Could it REALLY be that simple?  While we hope so, its really hard to get our hopes up.  And so we must wait, at least 72 hours until both the blood and urine cultures have gone their course.

The other little breakthrough we had at lunchtime was that Finley was indeed running a fever.  The nurses at the hospital always take axcillary temps (under the armpit) unless they get to a certain point - and then they take it rectally.  Finley's axcillary temp must not have been high enough to prompt the nurse to take her rectal temp overnight - though quite frankly, since she had such a high heart rate, it would have seemed to make sense - but when the nurse took it yesterday afternoon, she was indeed running a fever and it stood to reason that she likely had been running a fever since around 8 the night before when her heart rate started to spike.  So the nurse gave her some Tylenol and by the time I came back from lunch - her heart rate had gone from 175/180 down to the 150s and then it continued to drop all afternoon and had been hanging in the 130s at least through the time I called overnight.  Ideally her heart rate should be in the one-teens or one-twenties but this was a significant improvement.  This morning will be her third round of antibiotics and will mark a full 24 hour cycle so my hope is that whatever she has will start to really get knocked out.  The good news is that her surgical wound incision looks really good - amazing actually - so that wouldn't seem to be the source.  But trust me, there are plenty of other places that could have gotten infected - like one of her three IV lines, one of her three chest tubes, etc.  That is the tough thing about surgery like this - there are so many exposures because of all of the points of entry in to the body.  

And so we will spend another day in the PICU, trying to figure all of this out and praying that the worst is behind us.  Thanks for all of your prayers, thoughts and well wishes!!!!

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Finley's Medical History

Born on 8/8/2009 - Finley is taken to Children's Memorial Hospital via the transport team 12 hours after she is born.  She is having trouble breathing and is turning blue.  She is immediately admitted to the NICU.

8/9/2009 - Finley is diagnosed with Tetralogy of Fallot, a congenital heart defect and laryngomalacia, a condition that causes her to aspirate whatever she swallows in to her lungs.

8/21/2009 - Finley has open heart surgery to place a Blalock Taussig shunt to help facilitate proper blood flow.  When she is older, she will require a full repair of her heart.

9/10/2009 - Finley is released from the NICU.  Because of her laryngomalacia and reflux, she is fed 100% through a nasal gastric tube.

9/14/2009 - Finley is re-admitted to the hospital for an infection in her surgical wound.  Finley's genetic test comes back - she is diagnosed with CHARGE Syndrome.

9/15/2009 - During a CT scan to assess the infection, the doctors notice something strange on her CT.  It appears Finley has a malrotated bowel and will require surgery.

9/23/2009 - Finley is examined by the opthalmologist and she is found to have colobomas, a condition common with CHARGE Syndrome, in both eyes.  The degree of her visual impairment is unknown.

9/30/2009 - Finley has the Ladd's Procedure to correct the malrotation and also has a g-tube placed.  

10/7/2009 - Finley has a sedated ABR to check her hearing.  She has a mild hearing loss in her right ear and a moderate to severe loss in her left.  Her loss can be at least partially corrected with hearing aids.

10/8/2009 - Finley is supposed to be released from the hospital today but she has been having low blood sugars.  The endocrinology is called in to evaluate her.

10/29/2009 - Finley is finally released from the hospital with a unconfirmed diagnosis of hyperinsulinism.  Actual diagnosis requires fasting blood tests - because of her heart condition, it is not safe for her to fast.  She needs to have her blood sugar tested every three hours and we are taught how to administer an emergency glucagon injection in case her blood sugar gets to low.

11/1/2009 - Finley requires emergency injection because she cannot sustain her blood sugar.  She is taken to the local ER and transported via the transport team to Childrens Memorial.

11/10/2009 - Finley is discharged from the hospital on a 24 hour continuous feed.  We add polycose to her milk to help her keep her blood sugar at an acceptable level.

11/22/2009 - Finley is taken to the local emergency room with a bad cold - she is having trouble breathing and her oxygen saturations are low.   She is transported via the transport team up to Children's Memorial.

11/25/2009 - Finley is released from the hospital - just in time for Thanksgiving.

12/8/2009 - Finley is taken to the local emergency room for observation - she has a bad cold.

12/21/2009 - Nate is chasing the dog and the dog runs in to Finley's IV pole, knocks it down and pulls out her g-tube.  She is taken to the ER at Childrens to have it put back in.

2/10/2010 - Finley is admitted through the ER at Childrens - she has a bad cold again.  Oxygen saturations are low and breathing is labored.

2/13/2010 - Finley is released from the hospital.

4/17/2010 - Finley is taken to the ER at Childrens - she has pus draining from her belly button.  They suspect a urachal cyst - they send us home with orders to return on  Tuesday (during our scheduled visit) for an abdominal ultrasound.

4/20/2010 - Finley is admitted to Childrens for an overnight stay.  She will have a swallow study and abdominal ultrasound on Tuesday and a CT and sedated echocardiogram on Wednesday which will require anesthesia.

4/21/2010 - The anesthesiologists have trouble intubating Finley, so they call in her ENT to have a look at her.  He observes that her airway is 75% closed off - partially due to scar tissue from previous intubation and partially due to an infection.  The diagnosis is subglottic stenosis and may require her to have surgery on her airway.  She is immediately admitted to the PICU and put on a 24/7 breathing treatment and antibiotics and steroids to help reduce the inflammation.

4/26/2010 - Finley is well enough to be taken off of all oxygen.  Immunology and Infectious Disease are called in to examine Finley because the culture of her throat are growing staph and strep.  Infectious Disease is trying to figure out what could have caused her infection.  Immunology labs will be drawn to determine if Finley has an immune problem which sometime occurs with children with CHARGE.  This is the second significant infection she has had since she was born.

4/27/2010 - The lab calls to say that they mis-read Finley's airway culture.  It's not growing staph - its only growing strep.

4/28/2010 - Immunology labs are back and don't show anything significant.  Finley's lymphocyte counts are low but that isn't unusual for a child who is fighting an infection.  The doctor wants to re-examine her before her first birthday.  In the meantime she cannot have any live vaccines.

4/29/2010 - Finley is discharged from the hospital.  The ENT will do a bronchoscopy before her heart repair surgery to determine next steps on her airway issue.

5/11/2010 - Finley has open heart surgery to repair her heart.

5/17/2010 - Finley begins to show signs of infection which is later identified as a urinary tract infection.

5/25/2010 - Finley is discharged from the hospital.

5/30/2010 - Finley goes to the ER at Childrens because of fussiness, sweating, heavy breathing.  And echo later identifies that the pressure gradient around Finley's pulmonary valve is an astounding 90%.

6/1/2010 - Finley is admitted to Childrens to try a medication called Propranolol to help ease the pressure in her heart.

6/2/2010 - The Propranolol brings the pressure in Finley's heart down from 90% to 50%.  Finley has a positive test for C. difficile which will require antibiotic treatment.

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