Two kids, 5 shots and one tired mommy

We just got back from Finley's 15 month old pediatrician visit.  Right about now I am pretty darn grateful that Finley still can't have live vaccines - that would have meant that she would have been due for 6 shots - which would have meant that we'd be taking a separate trip to the doctor - I wouldn't subject her to that.  She had a good check up - and in spite of her chubbiness is hanging right around the 50th percentile for height, weight and head circumference.  Today she needed to get her tetanus booster - which was needed so we can have her immunology work up re-done to assess if she is making t-cells and antibodies to the booster.  Then she also had to get her flu shot and her RSV vaccine which would up being in two doses because of the amount of vaccine that had to be given.  That meant two shots in each leg.  Needless to say my little princess is snoozing already.  That fifth shot?  It belonged to Nate and boy oh boy you should have seen him when he found out her was getting a shot too.  He was crying so hard for like 20 minutes before he even got the shot and was saying, "getting a shot makes me want to cry my eyes out!".  He ended up crying more than Finley.  Clearly he's already brushing up on his "guy skills" of milking these types of situations for all the sympathy he can get.  Of course I gave it to him because he was just breaking my heart!  One Happy Meal later and that flu shot is but a distant memory.  That is...until he remembers later that he got it and he limps around for the rest of the night!

Its been a bit of a frustrating week in the Roth household.  I am just so tired of seeing Finley seemingly start to get well and then all of a sudden regress.  She seemed to be getting over her cold nicely over the weekend and all day Monday.  Tuesday rolls around and she is coughing like crazy and throwing up.  So was the vomiting a result of the coughing?  I think we finally figured out that she likely had the stomach virus that Nate had 4 days earlier (the Friday before Mike got home from Australia - Nate was up from 9:30 pm to 5 am vomiting - pretty much non-stop.  No fever or anything else.  Just vomit.  Just like that thing they keep talking about on the news!)  Once we changed her to an apple juice/Pedialyte mixture through her g-tube - she was fine.  Then once I restarted the Pediasure, oddly enough, he coughing resumed and she seemed to be really mucousy again.  So that got us thinking maybe the Pediasure was making her junky and after she coughed so hard overnight she vomited again - I changed her to straight apple juice to test that theory - and the coughing has been virtually non-existent all day.  So its frustrating.  It feels like there are so many balls in the air - that there could be so many factors coming in to play and that there could very feasibly be SO many things going on.  I just want her to be healthy for a good stretch of time.  No suctioning.  Nothing.  I know that might be an exercise in futility, but I want to figure this out.  And its frustratingly hard when you have so many doctors - its hard to know which one she should see first.  And there are other things too.  Other frustrating factors that I am trying to figure out.  Its just been one of "those" weeks.  I am trying to keep a good perspective.  I read this quote on another blog today and its a very good representation of how I try to manage all of this stuff.  And a good reminder that its just been a bad week and that I need to move on.


Attitude - by Charles Swindoll

The longer I live, the more I realize the impact of attitude on life.
Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company ... a church ... a home.
The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable.
The only thing we can do is play on the one string we have, and that is our attitude ... I am convinced that life is 10% what happens to me, and 90% how I react to it. And so it is with you ... we are in charge of our Attitudes.

1 comments:

Evelyn said...

OMG Tracy, I am a LOVER of quotes and keep them in a journal for inspiration and this is one of my top three favorites of all time and refer to it when I am down.

Hang in there, you are amazing!

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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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