Monday, February 7, 2011


I know, I know.. I went way too long between blog updates AGAIN.   aah!   I really wish that I would update more often, but life seems to get so busy and blogging is easily put on the back burner.  I have thoroughy missed hearing from everyone as I find it therapeutic to write and exhale those feelings that come with being a heart mom.  Your comments always give me the added energy that I seem to need.  I absolutely love hearing from everyone. 

How about this... I'll start with an update and then promise (to whomever is reading this - or just promise to myself) to write a blog entry everyday this week and then I should  be caught up by the end of the week.  And at the end of this entry, I'll give you a heads up of what to expect later this week. 

So here it goes... my biggest fear (aside from heart failure and transplant) came true.  Madison was diagnosed with RSV on Friday, January 28.  Is there another word for terrified?  Cause I have been absolutely terrified of her getting sick.  I think it's because of the unknown.  I had no idea how any sickness would affect her, or what I would do if she got sick.  I just wish that I could bubble-wrap her beautiful heart in an effort to keep it safe and then double bubble-wrap Madison.  Dang it... sometimes it is so hard and so stressful to be a mom to a heart kiddo!

Little did I know... my mama instincts would kick in and I would know exactly what to do when she got sick.  During our visit with her pediatrician on Friday, I was warned that her RSV would probably worsen, especially since she was immune-suppressed.  I discussed a plan of action with her pedicatrician and returned home with breathing treatments and an antibiotic for her ear infection.  (oh, Cooper also had 2 ear infections, but tested negative for RSV)  We returned for a follow up visit on Monday, which Madison actually looked better.  I'm still laughing cause she managed to look better only for her appointment.  By the time we got home, she wasn't looking so good anymore. 

On Tuesday, February 1, Madison was admitted to Primary Children's for RSV and an extremely high Prograf level.  Prograf is one of Madison's heart medications.  It is an extremely sensitive drug that can easily fluctuate.  Dramatic fluctations in Prograf can cause a person to have severe headaches, lethargic, stomach aches and even cause rejection.  Upon being admitted, Madison was pale and lethargic.  Looking at her reminded me of  heart failure again.  I found myself being so scared again.  She needed some oxygen and fluids.  I wasn't prepared for her needing oxgyen as her sats have always been perfect.  (even through heart failure)  The entire time that I sat in the ER at Primary's I was shaking.  I was so scared and wanted someone to reassure me that her heart was ok.  I didn't tell anyone how scared I was, but inside I was begging for someone to tell me that her heart was ok.  After her chest x-ray, a resident doctor came in her room just to tell me... "mom, her heart looks just fine.  It's handling the sickness very well.  Now we can focus and treat the RSV."  I was so relieved...  But how did he know that I was so concerned?  I never said anything to him about me being scared and nervous.  hmmm.. just another answer to a small prayer.  (it happens to me all the time..)

Madison was released on Friday and was so excited to see her brother again.  She is still sick and probably will still have RSV for the next couple weeks.  She doesn't need oxygen anymore, but we have continued with the breathing treatments twice per day.  Because her Prograf level was such a mess, she will have a two blood draws this week.  And then once a week until her level comes back to normal. 

This is Madison's first sickness since transplant and I can't believe how much does affect her heart..
1. Dehydration:  increases heart rate.
2. Low electrolytes: increases heart rate.
3. Breathing Treatments: increases heart rate.
4. Low electrolytes: increase Prograf
5. Any change in electrolytes:  affects Prograf
6. Any change in Prograf:  affects the heart.
7. Increased Prograf: affects the kidneys.
8. Her heart can become enlarged due to the stress of being sick.
This is enough to make a heart mama go crazy!

"Some people make a list of goals and accomplishments; I seem to have a list of fears. However, once I have conquered a fear.. it feels greater than any goal that I have ever accomplished."  Me

More to come...
1. One Year Post Transplant Dinner Celebration.
2. Madison's annual Heart Biopsy.  (Cath Lab)
3. Registering for Preschool.
4. A letter.


Shelene said...

Reading this makes my heart so sad and heavy. I wish so badly that I could have just dropped everything and come to sit with you. I would have even worn my pj's so you wouldn't have been the only one ;) We love you guys and think of you and pray for you on a daily basis.

Maegan and Brian said...

So glad that she is home where she can be comfortable. We are hoping that she makes a speedy recovery and that her Prograf levels can stabalize. We have you guys in our thoughsts and prayers.

Michelle said...

This comment is from one of our favorite nurses, Heidi. She commented on my Facebook post and I wanted to add it to the blog. Now I will have her comment forever. Thank you Heidi for your beautiful comment - I loved it!

Michelle...I read your blog and got tears in my eyes.
First of all....I am so glad Madison is on the mend and that you have conquered yet another fear. Yip-ee-ai-ay!!!
Secondly...I think Blogs like yours....if read by nurses like me....can o...nly make us better nurses...WE work it 8-12 hours a day....we don't LIVE IT. There are many people that work in medicine that put their ego's above the patient and families and simply NEVER try and take their shoes off and TRY and wear the shoes of the parents or patients. Reading your blog can enlighten us and we can heighten our awareness as to what goes thru your mind and heart as you conquer your fears.
Perhaps the resident that came in to reassure you was not one of the latter. Your prayers were answered and he came through with impeccable timing to reassure you.
I am in awe of your role as a heart mom and you are incredibly strong.

Summer said...

Oh I wish I had known! I don't have time to check up n our heart buddies as much as I'd like to! Our prayers will continue for you and your family!

Lots of Love,
Miracle Mason's mommy

Becca said...

I hope everything is ok! It is so hard on these heart kiddos. Is she still getting synergies? Ellie got approved this year but I fear we won't get them next year. Glad to hear from ya though. So sorry it's not good news.

Jenna said...

Hi Madison
My name is Jenna and I came across you are an inspiration and a brave courageous fighter. I was born with a rare life threatening disease. My site: I love it when people sign my guestbook.