Feisty Finley

So today began pretty poorly on the home front.  When I went downstairs to feed Rosey this morning, the rug in front of the laundry room door was saturated with water and when I opened it up - there was two inches of water on the floor from one side of the laundry room to the other.  Surprisingly, while it had begun to seep under the wall and in to the family room - luckily it only seeped out a couple of feet and for the most part remained contained in the laundry room.  It was however still pouring and the source of my flooding, the window well which had filled full of water courtesy of my overflowing gutters (which, once again, had not been cleaned), was filled with about 8 inches of water and it was still flowing in quite fast.  And, due to the lack of grass in the backyard because of the recently completed construction, it was muddy.  UGH.  So needless to say, a couple hours of cleanup later, I got to the hospital.

Miss Finley was wide awake and feisty as ever.  Now that she had awakened from her slumber, she was NOT happy with her breathing tube.  And so there she was, all day long, moving her head from side to side and munching on that tube like it was her pacifier.  They had been trying to keep Finley off of the Verset (sedation medication) in preparation for her extubation tomorrow because Verset takes a little longer to leave the system and they want to be able to easily wake her after the extubation to see how she does.  Anyway, Finley has ended up getting a dose of Verset every hour on the hour because as soon as it starts to wear off, she's at it again.  I think that overnight they are going to start a very low dose drip of Verset to keep her calm and comfy overnight and to keep her from continuing to kink the breathing tube.  Since they had to use such a small tube, its very easily kinked and twisted and Finley has really been working it over.  I am pleased to see that she has some fight in her as it much mean she is feeling better!

So since Finley's surgery on Tuesday, I've had this weird "coming full circle" feeling (bear with me - this might get cheesy).  When Finley first came to Children's - the cardiologist on call was this doctor named Dr. Gossett and he ended up being the doctor that diagnosed Finley's heart condition.  He sat down with us that first day here and explained everything in detail, talked about her prognosis, what to expect, etc.  And we have always really liked Dr. Gossett and he always reminds us of our first hours at the hospital.  And while I have seen Dr. Gossett here and there in all of the time we spent at the hospital, we ran in to him the day of Finley's surgery and I told him how bizarre I thought that was that he was there the first day and here she was having her repair and there he is again - you know - like coming full circle.  Well today, I was walking down the hall and I ran into this doctor named Dr. Singla.  Dr. Singla is the hospitalist at Lake Forest - he is the Children's physician that is on staff at Lake Forest and he was the doctor that originally identified that Finley was having trouble in the nursery and sent her to Children's.  He works full time at Lake Forest but is on call at Children's like one week a month or something like that so I hadn't seen him since November.  And there he was.   So we chatted and he came to see Finley and he marveled at how big she's gotten and when he left, I was sitting here, thinking again how weird that was that he was the first Children's doctor that Finley had come in to contact with and here I was running in to him after her surgery - like being on this journey and coming full circle.  Perhaps I am getting a little too philosophical here - but I can't help but thinking how interesting it all is.

In any event, Miss Finley is scheduled to be extubated tomorrow afternoon so expect a big update tomorrow night - hopefully its a good one - about how that goes.  And I have an adorable little picture on my camera of Finley today with her hair back in pigtails (it was out of control and needed to be tamed) but when I packed my overnight bag this morning, I failed to bring the cord to transfer off my camera - so it will have to wait until tomorrow when hopefully I will have some breathing tube free pics to post.

I also have an adorable picture that I will post of Nate playing with "Rosey's new friend".  Its a light for our patio that my mom got me for Mother's Day - its a puppy that has a solar light inside.  Anyway - Nate has been dragging it around the house, chasing Rosey with it telling her to "meet her new friend".  Its been priceless.  Nate and Daddy also had a special treat tonight - Daddy took him to see How to Train a Dragon in 3D - apparently Nate didn't think much of the glasses though and chose to watch the movie blurry, sans glasses.  Oh well.

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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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