Emergency Admission

I haven't posted on here in a long time...which is good.  It means Hope has been doing great and there has been no need to worry.  I have become pretty good about not worrying about her heart, kidneys, or her health in such a long time.  Today I got a swift kick in the butt about how serious her heart condition is and how quickly our perfect life can change.  Hope has been fighting a cold for a while now.  I took her in for a sinus infection and after 10 days of antibiotics, she took the last dose on Monday.  Tuesday morning she woke up pretty swollen in the face.  I didn't think too much about it...kind of blamed it on a possible peanut allergy because she has been eating a lot of peanut butter lately (and her weight is showing what a great job she is doing eating).  This morning she woke up and was swollen again.  I decided to call and get an appointment down at the Clinic to see if something else was happening.

Sadly, something else is happening.  Her heart function has decreased, her tricuspid valve is leaking, heart heart and lungs are enlarged, and her blood pressure is high.  All in all...she is in heart failure and I am scared to death.  I try to stay strong for her and my family, but today I totally broke down.  I fell apart in front of everyone and I felt a true loss of control.  I don't have any control over this situation or Hope's heart and that is something that has been so hard to admit and think about.

I am not sure how long she will be in the hospital, but they have her on Milrinone and they gave her a hefty dose of Lasix to get rid of the extra fluid.  She is totally miserable and keeps asking when we can go home.  I am heartbroken seeing her like this...totally unexpected and I was not prepared at all.  My princess is finally sleeping and I needed to purge my thoughts and feelings before I go totally crazy with worry.  This is her first emergency admission and the first time since March 8, 2010 that she will probably be here more than overnight.  March 8th is when she was admitted for her Glenn and she was home on the 14th.  6 days for open heart surgery and I am praying that she gets out of here before 6 days with this admission.

I will know more about the thoughts from all the doctors in the morning.  I am thinking that her being sick kicked her already sick heart into failure and that when she gets this ick out of her that her heart will be better too.  Dr. Prieto was not able to see her today...she had an emergency cath, so we saw Dr. Golden.  He said something similar and I hope we are correct.  Dr. Prieto stopped by this evening and she is kind of thinking it may be due to high blood pressure (hypertension) with a possible kidney issue as an underlying cause.  Medicine could help with this as well, so I will wait and see what happens in rounds in the morning.

I am hoping to keep this blog updated through her admission because it is a good release for me and I need that when I am here.

Please keep Hope in your thoughts and prayers.

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.