Nanny 911

With Mike in Argentina this week, Nate has been missing his daddy a lot.  And needless to say, he's been a bit of a terror.  If I had a dollar for how many times Nate has told me since Saturday that I "wasn't his best friend", I'd be able to go on a nice little shopping trip.  As awesome an age as three has been, its been equally frustrating and Mike and I often find ourselves really hoping that its just the age and that he doesn't really have issues.  We continue to be hypersensitive toward Finley's hospitalizations and the impact they could possibly have on Nate.  Although we try to keep things as normal as possible for him during those times, he's definitely started to be more emotional around those times.  I tried to begin the conversation with him last night about how Finley would be going back to the hospital last week and he started to cry - so I thought we'd save that for another time.

Anyway, Nate and I started off with a bang yesterday morning.  He was adamantly refusing to get ready to go to school, was running when I tried to get him dressed (and laughing at me) and subsequent time outs didn't work - he just doesn't care about being punished (and he laughed at me some more).  So I took his DVD player away.  And he took notice.  After he finally got dressed, I agreed to give him a second chance with his "DDD" player (as he calls it) but after school was more of the same - so not got "grounded" from his DDD player and the TV.  All night long, he kept asking me, "Do you want to let me watch my DDD player?  I can tell you sorry." or "Let's watch Madagascar mom".  And then I kept telling him - he made that decision he said, "I can have it in the morning time?".  Needless to say, Nate and I had a nice dinner together and a nice quiet, TV less evening.  And since he had nothing else to do, he wanted to cuddle with his mommy a lot - and we both fell asleep at 8:30 pm!  I think I can get used to being the bad guy (LOL!).

Finley is doing awesome.  Her smiles abound and she seems to be feeling the best she has been in a long time.  Prior to her hospitalization she had this pesky cough and runny nose for weeks and now its completely clear.  When she sleeps, she is so quiet, I have to put my face down really close to her to make sure she is breathing! She has been so actively chatting, kicking her feet and doing her Miss America wave (she does this thing where she holds her paci in one hand and twirls her wrist and when she does it, the other hand simultaneously moves and does the same thing!).  Her progress though as made us think - that certainly the antibiotics and steroids have helped to get her better so maybe that wasn't just a cold she had?  Its something I plan to talk with the ENT about next week.  Perhaps the hardest thing for us right now is wrapping our heads around the fact that in less than a week she will be back in the hospital and while planned, it will likely be the most serious surgical procedure of her life (hopefully).  And to anticipate that we will be missing those smiles, the chatting, those waves, for a couple of weeks while Finley recovers is heartbreaking to say the least.  So for now, we'll just soak them up...


And this about sums up Nate's mood for the past few days...

2 comments:

mary nunez said...

even when nate is mad he looks so handsome!! And finley such a princess love them!

Annie Cue said...

It's definitely an age thing with Nate... it will pass. You guys are doing great maintaining normalcy as much as possible for him. Love Finley's smile!

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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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