Back to civilization

The electricity has only gone out at our house one time in four years - and that was only for 3 hours.  That was, until Tuesday.  A giant part of a tree at my neighbor's house (three doors down) fell on the power line around 6 pm on Tuesday night.  At first, it was pretty funny answering Nate's questions - every room of the house we went in to he asked "does this light work?" and he couldn't understand why I couldn't cook him dinner (our stove has an electronic ignition).  The it got old.  Really fast.  Nate was whining about wanting to watch "his show" on TV and how he didn't want to sit in the dark and could I please just change the battery in the TV.  The other problem was that Finley's pump had been running on its battery power since we had woken up that morning.  Each morning, we always unplug her and bring her downstairs and we don't re-plug in until the evening when we put her to bed.  We were very worried about her battery lasting through the night.  Fortunately, not only did she last through the night, she lasted through a big chunk of the afternoon and she could have gone longer but we brought her power cord with us to her cardiologist appointment and we recharged while we were there!  Which ended up being a really good thing because the power didn't come back on until after 8 pm.


Nate playing with his "magic wands" in the dark

(With the flash...)
Finley had a great visit with the cardiologist yesterday.  We got great news - that the pressure in her valve had not changed - its still hanging around 20% - which is still in that normal range.  Dr. Lay didn't end up increasing her Propranolol - in spite of the fact that she gained a pound and grew an inch in a month!  That is especially great news because that means that we are letting her slowly grow out of needing the medication.  Finley was hilarious during her appointment - she was chatting the whole time - moving and grooving all over the exam table - Dr. Lay said Finley is the silliest baby she sees...then during her echo - Anetta, the technician, must have been pressing on Finley's ticklish spots because Finley was laughing practically the whole time!  It was adorable!  The even better news?  Finley doesn't have to go back to the cardiologist for 4 months!!!



Finley enjoyed the Bears game Sunday with daddy in her cheerleading outfit courtesy of Mandy and her daughter Peyton!  When daddy came home from the gym and saw her dressed and ready to go - he was smitten!  Mommy took Nate to the park during the game - Nate was disappointed there were not other kids there for him to play with - of course I explained that that was because all of the other daddy's were at home watching the Bears game!  So while he wasn't happy that he had to settle with me as his playmate - he was also pretty bummed when I made him leave the park early after I WHACKED my head square on one of the poles on the slide.  I was under the slide pretending that I was the troll and the slide was my "troll bridge" a la Dora the Explorer - and I hit my head with so much force - I actually thought I was going to vomit.  I made a quick recovery and we played some more, but then the headache set in.  As we were leaving Nate asked me if his daddy could bring him back after the game!!!!

Finley and her Grammy!
This weekend we are looking forward to going to the Mt. Prospect fire department open house - and annual tradition for the Roth family - and also seeing the girls and Baby Austin on Saturday!

Thursday, September 23, 2010 | |

 

2 comments:

Melissa Dylo said...

I am so glad that your power finally came back on and that you all found ways to be amused! Loved the glow stick pic of Nate! So THRILLED that Finley's cardiology appt went so wonderfully! That is great news - 4 months! WOO HOO!!! Great pics of Miss Finley as a Bears fan! Hope your week is great! Hugs! Melissa

September 27, 2010 at 7:57 AM  
Anonymous said...

Hey Tracy - So glad all's going well! Love the Nate (poop) stories - I just laughed & laughed! What's the name of that new book you mentioned - I'd love for Corki to be able to see it. Take care! Val

September 27, 2010 at 6:16 PM  

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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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