Yesterday and Today

A PICC line was discussed in rounds yesterday and Dr. Prieto wanted to see Hope's echo today before making that decision.  Sadly, Hope's echo did not look much different today than on Wednesday so a PICC line was ordered. 

Hope's numbers were not great yesterday, but today they are looking much better.  She spent the day telling me how hungry she was and asking for a cheese sandwich, chips and cheese, chocolate bar, macaroni and cheese, a brownie, and anything to drink.  I felt so bad telling her no...she had to wait until after they placed the PICC line.

Sadly, her IV blew in her hand so she needed a new one.  They put this one in her foot and she really likes that much better.  The one in her left hand made it hard for her to do stuff and she didn't like it at all.  

Fast forward to 5pm.  It has been crazy in the PICU today.  Two new little babies...one needed an urgent Septostomy in the cath lab and the other one was 'just' an admit.  Dr. Stewart was also performing a Glenn on a little one, so it was totally crazy.  Hope will not get a PICC line today.  I am actually perfectly fine with that...I feel like I want to give the medicine the weekend and pray with everyone that her heart gets stronger.

I also want to make sure I thank so many of the fabulous people at the Clinic.  Child Life and Occupational Therapy have been awesome.  We didn't have to use these services when Hope was in the hospital before because she was so young.  They are always available and come to the room to play with her anytime.  She has had Art Therapy and Music Therapy as well and loved them both.

I want to thank the great nurses that Hope has had during her stay.  Kate has been her night nurse and is great.  She doesn't bother us too much and we appreciate that more than I can say.  Liz was her nurse yesterday and is a great lady.  She played with Hope when we ran out with the boys to get a bite to eat.  She is also a great listener and I can tell that she loves working with kids.  Finally...Oksana.  So far she is my favorite nurse and is just so perky.  We had her today and will have her tomorrow too.  All of Hope's nurses have also been keeping an eye on Weston.  He is getting ready to get back on the transplant list.  Be sure to keep him in your thoughts and prayers...he is an amazing little guy and his parents are so nice.

I HUGE THANK YOU to Margaret Andorf and Joellen Podoll.  Both of these ladies spend a lot of time with their girls at the Clinic and still came to visit Hope and I.  Margaret brought Hope some awesome Dora stuff and she loves it all.  

Last, but definitely not least...THANK YOU to my family.  They are the best and are always there for us.  Most everyone has visited and they have made sure Hope is happy and they take stress away from me.  They also make sure we eat (Slyman's was excellent) and have someone that will be there for any help we need.

Please keep Hope and our family in your thoughts and prayers.  THEY WORK!!!  We have witnessed so many miracles in Hope's life and so many of her heart friends.

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.