Long Overdue Updates

My last post was from March 20th...so much time has gone by and so many great memories have been made.

This will be a post in pictures and will end with our latest cardiology visit...be sure to check it out because we are preparing for a summer Fontan.

April

Easter Fancy - she loves her hats!

May

Swinging and fashioning another cute hat!

June

Puppy love...yes, that is a little puppy.  Check out the nail polish...she did it herself...even her knee got a little!

July

Hope and daddy...just hanging out.

August

Swimming at Lodi Park

September

Happy 4th Birthday

So...we did have the Fontan talk at Hope's appointment this week.  She had appointments all day at the Clinic, so we got to spend time in many areas...the biggest news is the Fontan.  She will most likely have her Fontan next summer.  We will have our next appointment in March.  At that time, we will schedule the pre-Fontan cath.  This will tell everyone the condition of her heart...what they can't see on the echo.  It will tell everyone whether she is a good candidate or risky for the Fontan.  They may balloon her left pulmonary artery again or put in a stent or do nothing.  Depending on what they do in the cath lab will determine how long we need to wait for the Fontan.  My preferred date for her Fontan is June 18, 2014.  She gets out of school at the end of May.  We want to have some time to have fun during the summer.  We also want to make sure and celebrate Paul's 6th birthday.  I know things will probably get in the way and the date may change, but I want her to have the Fontan before July 1st.  Residents and Fellows change in July and I would prefer to have the more experienced Residents and Fellows on service when she has her Fontan.

I will try and update more often...especially because the Fontan makes me extremely nervous and I am sure I will need to get a lot off my chest before next summer.  Hope also needs to try and gain a few more pounds.  She is still around 26 pounds and they would like to see her closer to 30 pounds going into the Fontan.

Great Visit

We had our follow-up appointment today to do a weight check and a pulse ox check.  At Hope's last cardiology and nephrology appointments, her weight was down to a little over 25 pounds (from a really bad stomach flu that lasted much longer than I ever wanted).  She had gotten up to almost 27 pounds, so it was much lower than we were expecting.  Her pulse ox was also pretty low and there was talk about a possible Fontan this summer.  I keep hoping to hold off for one more year and have the Fontan next summer.  Her pulse ox at her appointment didn't go above 77, but today it held steady at 84.  I knew I didn't really need to worry because her physical therapist at school checks it at least once a week.  It was 87 this week, so I knew it would be fine.  I also decided to weigh her at home before we left so I wouldn't be surprised.  I was still happily surprised when she weighed 26 pounds 2 ounces...much better than I was hoping for.

After we were done with her appointment we had to go down to the lab for more blood work.  Her calcium was high with the last test, so they wanted to re-test her blood.  I have no idea what the results will be, but I am not worried too much about her calcium.  I look at her BUN and Creatnine to see how her kidney's are functioning.  So far the last few times her kidney numbers have looked good.  Please say a prayer for good results...I will try and post them when I get them.  All of her results are available to me online...which is really nice.

Hope is dressed up in one of her Easter outfits.  She is super cute and loves dressing up.  She is definitely a girly girl and I am going to need some girly help with her.  I am so far from a girly girl...like no makeup, jeans, hair in a pony kind of person.  She would be in a dress and dress up shoes every day.  Of course, she hates to have her hair done, but looks so cute in bows and ribbons.

Blood Test Results

The above is her renal panel function test.  It is a blood test that checks how well her kidneys are functioning.  Her Nephrologist is happy about the BUN and Creatnine...which are the major markers for kidney failure.  Based on the numbers, her kidneys are still working pretty good (or her one is working better than expected).  We do have to go back in 2 weeks to check on her Calcium levels because they have never been high and there is a little concern.  I am thinking it is all the cheese and dairy products she is starting to eat.  She probably eats 5 pieces of cheese a day.  I don't really want to limit her cheese either because it is something she loves.  Hopefully it is a fluke in the test and we don't have to worry about it.

I am breathing a sigh of relief with these results because it means we don't really have to worry about her kidneys for at least another 6 months.  Hopefully we will get some good news when we go back for her O2 and weight check!