The Jelly Chronicles Blog
11 months ago
One Year Ago Today
This date is etched in my head like all of the other important dates I have jumbling around up there. One year ago today - exactly 4 days after Finley's discharge from the NICU - relatively speaking - her chest exploded. The huge glob of pus that erupted from the surgical incision on her chest - 23 days post op - surely it wasn't good. And it wasn't. I rushed her down to Children's where the nurse practitioner removed the remaining steri strips that were covering her incision to reveal a red, angry infection. The urgency at which she rushed around that exam room and phoned Dr. Backer, Finley's surgeon, was all I needed to know that this was very very bad. Finley was immediately admitted to the PICU where the CV surgery team began to assess her and order tests and CT scans and the like and as all of this bustling went on around me, I left the room to pump. Little did I know, things were about to get more complicated.
When I returned, there was a message for me. From Dr. Burton. The geneticist. The results of Finley's genetics test were in. She'd like to talk to me. But it was 5:30 pm and I knew she'd left for the day and as I sat on the phone with Mike and we put our heads together to try to figure out how we could get our hands on those results without waiting until the morning - I received a call from Finley's pediatrician. I had called to tell her Finley had been readmitted with this infection. She asked if I had spoken to Dr. Burton. WHAT? Had Dr. Burton called her???? So after a lot of cajoling, and yes, I would talk to Dr.Burton first thing in the morning so she could explain first hand, and blah blah blah - she told me. Finley has CHARGE Syndrome. CHARGE Syndrome?? It happens in 1:10,000 live births she told me. And since she knew that Mike and I would immediately Google it (something the doctors ALWAYS advise you NOT to do) - she gave me this website: www.chargesyndrome.org.
September 14, 2009 is the day we found out Finley had CHARGE Syndrome. And while its huge bit of information to digest and process, it also gave us a sense of relief in some ways. All of this "stuff"...it finally had a name. And as we poured over the information on the Foundation's website, this puzzle started to come together. Look at that - there is a picture of Finley's ear on the site! The typical "CHARGE" ear. Heart defect? Check. Swallowing issues? Check. And as we read the other significant symptoms of CHARGE - colobomas (vision loss) and hearing loss....we hoped that Finley would fall in to the teeny tiny perfect of kids who don't have those things.
Fast forward to today and we definitely know a lot more. Do we know everything? No. We know what we know and certainly there will be a lot more we will find out. But in spite of all of that and in spite of the fact that we now know that yes, Finley is also visually and hearing impaired, and all of the challenges she's faced and continues to tackle, its not quite as scary any more. And as we look back on this last year since we became part of the "CHARGE Family" we focus on Finley's accomplishments, achievements and we focus on taking things day by day and soaking in every smile and every moment and making those moments the best they can be.
And if you never have, please take some time to visit the CHARGE Foundation website and learn more about CHARGE Syndrome today!
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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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3 comments:
Congrats to mom, dad and big brother Nate for being loving, strong and amazing people...Finley is a lucky girl to be so well taken care of:)
I remember that day we saw you in the elevator like it was yesterday. That week was very hard for us too as leah had her heart surgery and 2 cardiac arrests, BIG HUGS to you tracy!
What a blessing for Finley to have such a loving, devoted family. And yes each and everyone of her accomplishments should be celebrated. She is amazing as are you Tracy!
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