Happy Weekend!

Its been a couple of days since our last post - that is primarily because Finley came down with a tummy bug overnight on Thursday so I was up all night with her vomiting.  She started at midnight and was pretty much non-stop until 4 when she took a little nap and then woke again at 5:30am and vomited again.  Normally, all of this vomiting would have been bad news as previously had it been virtually impossible to keep Finley's blood sugar up if she vomited - even just one time.  This time, we had quite the opposite problem - he blood sugars were too high. Normal range is 70-110 - hers got as high as 180 - which is pretty much off the charts for Finley!  We aren't used to HIGH blood sugars in this house - in fact, I had tested Finley before I went to bed on Thursday night and she was 165.  I turned her pump off for 15 mins and retested her and she'd gone done to 143 - which, since she was sleeping I figured was okay.  So when she woke up sick, I was unsure, since we have no experience with HIGH sugars - if the fact that her blood sugar was high was what was causing her to be sick.  It was sort of funny because when you have a child who is as medically complex as Finley is - you automatically think its got to be attributed to one of the other problems, a complications or something - the thought never really entered my mind that she might have genuinely caught a little tummy bug.  I am still not totally convinced that is what it was - but all signs at the moment are pointing in that direction as she had perked up by the afternoon yesterday and is as good as can be this morning.  So in case you are keeping score - this tummy bug was 'normal' thing number two for Finley this week (first was the tooth).  It sure would be great if we are getting to the point with this journey of ours that we are just having 'normal' parenting moments for a while!  (As a side note, I will say though, I did enjoy the fact that administering pedialyte to a child with a g-tube is MUCH easier than trying to get a child to take it orally!)

We had a nice visit from my mom and my two beautiful nieces yesterday.  They were kind enough to come and entertain Nate because we had an endocrine appointment at 10 am. The last endocrine appt I brought Nate to - lets just say he wasn't on his best behavior and his antics included taking off his shoes and denouncing the snack that the nurse was kind enough to bring for him (he was complaining he was hungry and thirsty and when the nurse brought him animal cookies and juice he said , "BLAH!  I don't like THOSE cookies."  Given all of the craziness in our lives - I hadn't seen the girls in a while (which I hope will begin to change soon!) and when I came down the stairs and saw Gabi standing there - I had to do a double take because she looked exactly like my sister (Tammy).  I mean, she has always been a little clone of Tammy but even more so now - she and her sister Kassidy are just growing so fast.  Gabi was like a little mother hen with Finley and stayed by her side all day long, playing with her, etc - it was adorable and I think Gabi certainly had a future in babysitting!


Nate was so thrilled to have the girls here to play with - he was so wound up, I think he was actually scaring Kassi a bit.  He was up in her face yelling "BOO" or saying, "You can't get me!" and trying to get her to chase him.  It was a lot of fun.  Our endocrine visit went well - the doctor said that Finley's high blood sugars overnight could have been an insulin response to her being sick - but also attributed to the fact that her hyperinsulinemia seems to be correcting itself post surgery (like we hoped it would).  As I previously mentioned, a normal range is 70-110 - we had previously struggled to keep Finley in that range and the only way we could do it was with adding polycose to her feeds.  We had previously been adding 1 tsp per ounce and yesterday we cut that back to just under 1/2 tesp per ounce and we increased her rate from 30 ml/hr to 35 ml/hr to account for the calorie loss.  So far she is doing great!

And so this weekend I think we are going to focus on getting some miscellaneous things done around the house that have been bugging me for a while - like touching up the spots on the ceiling in my bedroom that I painted - like two months ago.  Or changing out those light bulbs in the can lights in the den (the thought of lugging the ladder in the house is unappealing to me : o) I am also going to try to get Nate transitioned from the potty seat (which I know he doesn't need anymore) to using the regular toilet.  I think its time to nip this....


in the bud.  As much as this cracks us up every time he does it (which is why we've let it go on for so long) the final straw was Thursday when the guy from the medical supply company came to replace our pump. While the fact that Nate runs around the house in nothing but his underwear 24/7 is embarrassing enough, he was on his way out of the bathroom, carrying his potty seat, getting ready to set up shop in the den so he could watch what the guy was doing. Fortunately, that disaster was averted.  So, I think I am going to put his potty seats away before he wakes up this morning, come up with a clever excuse as to where they went, and see what happens.

And here are a couple of Finley's 10 month birthday pictures...


Oh yeah - Nate's Water Scouts program starts this morning at Olympic Park.  We are praying that he will "ticipate'.  

Have a wonderful weekend!

3 comments:

Anonymous said...

great pics of the kids! i will be sad to see the funny potty pics not post anymore though! haha! we start back up at swimming today too - fingers crossed for both you and i! (hey and we are painting ceiling too this weekend) :o)
enjoy!!! Liza

mary nunez said...

love those pictures she looks like a big girl and nate so funny in his potty chair.

Unknown said...

I, like Liza, will be sad to see the potty chair pictures disappear. They always give me a good chuckle and remind me that life doesn't have to be so routine. I love the recent one of him sitting at the coffee table with this hand on his head, it appears like he is really concentrating on something!

Glad to hear Finley is feeling better. She is such a beautiful strong girl!!

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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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