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.
4 comments:
Hi hon! I am the worst and have been a total slacker about checking your blog! Summer is whipping by and I see by your posts that you have been super duper busy! Congratulations on the success of the sale and have a GREAT time on your trip to the Charge Conference next week. I think about you all lots and love to see the pics. I swear one day we WILL get together. I have yet ot meet Nate or Princess Finley! I think Mols would have a blast chasing after Nate. Have a great rest of the week! Love and Hugs! Melissa
Hey! I'm so happy to hear the garage sale was a HUGE success!! Love the pics, especially Nate in your boots...classic :-) Den and I had our first adult only vacation from the kids back in April and it was truly awesome. I too was really worried about how the kids would do, but with the great childcare you have, it will run smoothly and on schedule, just as it did for us. It was nice to reconnect and remember you were a couple before these little munchkins rocked your world!! Have a blast :-)
Congrats!!! What a HUGE success your garage sale was, I am more than impressed! So glad you got to meet Eva and Crystal too, a wonderful family. Looking forward to seeing you in a week at the conference!
Tracy--just wanted to say thank you again for coming out to the run today...you did awesome! We didn't raise as much as your garage sale, but we'll keep trying! Again thank you!
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