A quick (and AWESOME) update!

Yesterday Mike spent the day at the hospital with Finley and usually while he is there he gets so absorbed with his visit that he doesn't have time to call with an update - I usually have to settle for some scattered texts messages until he gets home and I can drag it all out of him!  How are her sats?  Did she get her last chest tube out? Is she up to her goal amount of feeds?, etc.

So far her progress has been nothing short of amazing and she is doing far better than any of her doctors had expected!  Does that make me nervous?  Of course it does!  Based on how this journey seems to have gone for the last 9 months, we know to expect the unexpected with Finley so while things seems to be hunky dorey, I will feel better once we are several weeks post-op and we seemed to have cleared that "possibility for infection" hoop.  That came at about the 3 week post-op point last time.

Anyway - Finley is COMPLETELY and utterly oxygen free!  That's right, no CPAP, no hi-flow, no regular 'ole nasal cannula.  Her cute little face is free of all of that junk and she is holding her own!  Also - she did get that last chest tube out, is up to her goal amount on her feeds (ie. her regular daily amount of breastmilk - she had been getting IV nutrition) and Mike was even able to put her little onesie on her! (As simple as that sounds - when your child is in the hospital - seeing them in their own clothes makes SUCH a difference).  Don't mind Finley's half open eyes in this pic - for some reason - its a creepy little thing her and Nate both do!

The only bad update from yesterday is that Finley seems to have a pretty bad diaper rash.  Some genius thought it was prudent to give her a glycerin chip to help her poop since she hadn't pooped in 5 days.  I asked the nurse how they expected her to poop if she wasn't being fed????  Needless to say, I guess she's been pooping these tiny amounts constantly now and so her little tush was bleeding last night!  UGH!  So, I asked the nurse to get her some Triple Paste (this is what we use at home and hands down THE best diaper cream out there) and the nurse said yes - she was waiting on the doctor to come by and write a prescription for it?  WHAT?  So apparently Desitin and Sensicare are easy to come by but a prescription is required for the good stuff. When I called at 1:30 am the doctor still hadn't been by to write the prescription so today I am bringing my own and I am also bringing all sorts of lotions and potions and am going to give little Finley a day of beauty!!!  Really I am just hoping to help sooth those red marks on her cheeks that the tape has made and all of the other little irritated areas on her skin because the tape they use wreaks havoc on her poor sensitive skin!

Yesterday mommy and Nate had a nice little day together.  We spent most of the day playing at home and then we ran over to Kohl's to get him some new sandals to replace the two sizes too small ones he'd been insistent on wearing.  He picked out some light up Toy Story ones!! In keeping with that theme, we also needed some new swimming shorts for his swim class that starts on June 12th.  And he picked.....Toy Story!!  LOL.  It was a Toy Story sort of a day!  Even daddy got some new "unders" but after the second attempt at this and buying "the wrong kind" - daddy is on his own!  Who would have thought buying men's underwear could be so complicated?

When we got home, Nate helped me to clean out my car - which hadn't been done in as long as I can remember so all of the crushed goldfish crackers, melted M&Ms and other miscellaneous goodies that were on the floor in the backseat are now a thing of the past!  And my sweet little Nate thought it would be a good idea to gather up as much as he could in his hands before I vacuumed it up and throw it in the yard "for the birds".  Because "its nice to feed the birdies right mom?".  We also installed Nate's new big, boy booster seat and are making preparations to move Nate's old car seat to Finley's side of the car because my little 20 pounder is a little too heavy for her infant seat these days!

Before I go - I had to just share this funny conversation Nate and I had yesterday.  I still think that this is such an awesome age because the stuff that he says is so priceless.  Me: "Nate - can you tell me what happened over by your toy bin?" (background:  EVERY toy was out of the toy bin and on the floor in front of it). Nate: "In the living room?"  Me: "Yes".  Nate: "I make a big mess?"  Me: "Ya think?  How about you go over there and clean it up for mommy?"  Nate: "Um mom.  I don't 'sink' so".

3 comments:

pmnorkus said...

Sounds like she ison the "RIGHT" road to recovery. Thank you God!

pmnorkus said...

Sound like she is on the "Right" road to recovery. Thank God!

Val Hobson said...

How awesome, Tracy!! To be breathing on her own is SO amazing! Congrats!!!

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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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