Daddy has all the luck

Yesterday I had a day off from the hospital.  The frame on the chaise of our new sofa broke and I needed to wait for the furniture people to come pick it up for repair. We had one of those 1-4 windows of time and since Mike needs to be in the office today and tomorrow, he spent the day at the hospital with Finley.  Don't get me wrong, it was a gorgeous day outside and I got to go running and run a few errands and get Nate to the doctor to get his ears cleaned out (more on that later) but I was just missing my baby girl so much.  And I get increasingly frustrated with Mike when he's there because he isn't so good at sending me updates (I mentioned this in a previous post).  Needless to say, I am pretty sure Finley's nurse thought it was crazy that I called her for an update when my husband was sitting there right in front of her.  Oh well, I got my update now didn't I?  Finley also had a special visitor yesterday because her caregiver, Gigi, spent the day visiting Finley and got to hold her for a nice long nap. Finley must have gotten REALLY relaxed because at the end of that nap when Gigi went to put her back in her bed - she noticed Finley had had an enormous blow out on the pillow that she had been laying on on Gigi's lap!  I know what Gigi was thinking - thank God for that pillow!

Finley started the day pretty cranky and fussy so she got some medicine to make her more comfortable.  As of the morning read, none of her cultures had grown anything yet and her heart rate and breathing had been stable.  The antibiotics appeared to be doing their thing and when the surgeons rounded they seemed to think that things were under control - which is always reassuring.

And so Finley had the aforementioned nap and when she woke up - Gigi and daddy got a little treat and got to see the first post-surgery smile from our little princess.  Apparently Finley was chirping away and smiling - two things that are always a good sign that Finley is feeling better!  And of course - I MISSED IT! UGH.  That's okay - I am hoping for more smiles from my princess today!  My hope for today is that she will be completely weaned off the oxygen again - overnight when I called the nurse said she was off the hi-flow and was on a very minimal amount of oxygen.

My day off finally gave me a chance to take Nate to the doctor to have his ears checked.  He's been messing with his ear - sometimes he tells me it hurts - but he's sort of inconsistent on that and so I never know if it really hurts or not. He's got this thing where sometimes he will say - I have an infection mom - I need to go to the "hossible".  And we think that is because he wants to be like Finley.  Anyway, when we look in ear - we can actually see junk in there and have attempted to clean it out before - but I got to thinking I was pretty sure this kid could not possibly hear me well.  So I took him yesterday to have his ears checked.  As it turns out - the one remaining tube he had in his right ear was out and sitting inside his ear - completely surrounded by a ton of  weird ear junk.  And so in one fail swoop, the doctor scooped it out and out came THE biggest piece of ear junk ever - with this tiny blue tube in the center.  I am now convinced that there is no way Nate could possibly hear well in that ear - and he actually told me that he can hear better now! LOL!  So perhaps the fact that he doesn't listen isn't only attributed to the fact that he is three?

2 comments:

Anonymous said...

Ok - am i the only one wondering what the blue tube in the center was since he doesn't have tubes anymore??? I hope you have a great day with finley today! -Liza

Anonymous said...

So glad Finley's back "on the road" to getting rid of the infection or whatever caused the spiking of heart rate & white cell count! Alivia has her catheterization Monday. Prayers heading your way, Tracy! Val

Powered by Blogger.

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.

Followers

  

Get a playlist! Standalone player Get Ringtones