The Tuesday Post

Sorry its been so long since I've updated - last week was sort of a rotten week from a health perspective (mine - not Finley's!) so I am glad to put it behind me!  The headache I mentioned in the last post, well that ended up finally breaking on Day 7 - just in time for the cold to arrive - and Nate got it too.  I felt so unbelievably miserable Saturday - and I couldn't take anything because I am still pumping.  Needless to say - my goal was to wage war on that cold Saturday and happily - it worked.  I was popping zinc melts like clockwork, every three hours, doing Sinus Rinse and as per my girlfriend Gina - downing raw garlic before bed.  Sunday - I woke up a new person and even found it in me to go for a run - something I hadn't had the energy to do since my 5K the week before.  And I was even better (healthwise) Monday - just in time for my least favorite day of the week!  UGH.

Nate as his 2 year old birthday party


Finley had a wonderful weekend - she has been chatting our ear off with the Da-Da-Da-Da.  We're still working on the mama.  She goes to the cardiologist tomorrow so I am anxiously awaiting that appointment and the echo because I am praying that the medication is still working on her pressure in her valve.  If I were to go solely what she looks like though - I would say that she's better than ever - we will see!  We went to the neighbor's graduation party on Sunday and she had a great time - EVERY single person who came up to us said, "Oh my God - look at her hair".  Hahaha.  Its gets to be quite funny after a while.

Finley at just under 2 months old - proof that she had a lot of hair from day one.  Also one of her last pictures with the NG tube.

Nate on the other hand. He had a rough Saturday - and for a kid who is pretty generally happy-go-lucky and not generally a problem - he simply was not himself.  I think that it was mostly attributable to him not feeling good also - boy was he a handful though.  It seems like he spent most of the day in timeout.  He was going to go with his dad late in the afternoon for a haircut but there was no way he was in any mood to go out much less behave.  After a really long nap, he started to come around.


And a huge congratulations to my sister-in-law Andrea and her husband David who welcomed their first child, David, over the weekend.  David was 7 lbs and 9 ozs and 19 inches long.  Grammy and Pop-Pop were so lucky to be able to be with the in Seattle for the birth.  We can't wait to meet our new nephew!

Finley's first NG tube free picture - this was right before she went down for her malrotation and g-tube surgery.  Look at that beautiful face!

And so we are looking forward to the long holiday weekend. I am looking forward to getting out of ERRP hell at work (Early Retiree Reinsurance Program - my least favorite part of Health Care Reform) and we are all looking forward to a nice 4th of the July celebration at our good friend Eric and Andi's house and finally being able to meet their little man Eamon - who isn't so little anymore (he was born in November).  Its nice to be post-surgery and be able to start doing these things again and seeing our good friends who we haven't seen in so long.

P.S.  Thanks for bearing with my old school (sort of) pictures - the camera cable should be on its way!!

Tuesday, June 29, 2010 | |

 

1 comments:

Unknown said...

Glad you are feeling better Tracy! I can't wait to hear how Finleys ECHO goes :)

June 29, 2010 at 12:29 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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