February 28, 2010

Walking and Surgery Again! ~ Update 8

Alexa, is doing so well it is unbelievable to me.  The only pain meds she is on is Tylenol and Ibuprofen.  She's also taking Lasix and Aspirin, all orally now.  She got up to walk yesterday.  I was pretty nervous about it.  I thought standing up was enough but her nurse said she could do it and the surgeon wanted it.  She said we'll just have her walk to the doors and I said, 'of the room right?'  And she said 'no, out to the PICU entrance'.  I couldn't believe it but she did it and seemed like she actually liked it.  Today she was up and out again and playing.  She did not want to come back in the room.  Nurse said, if you have to fight a patient to come back to their PICU room it's probably a sign they don't need to be here anymore.  That is very true and we should/would be going home in in day or two if it were not for the Complete Heart Block. 

BUT instead of heading home, Alexa will be back in surgery tomorrow to install a pacemaker.  Unfortunately, her heart electrical conduction was damaged during surgery.  This is one of the risks of the Rastelli since it involves working in an area very close to this system plus it is invisible so doctors know it's there and try to avoid it but it cannot be seen.  

Complete heart block (complete AV block) means that the heart's electrical signal doesn't pass from the upper to the lower chambers. An independent pacemaker is needed to shock the ventricle into contracting and pumping blood.   Gabe and I are pretty sad about it all but learning to accept it.  She could be better and she could be worse, but we cannot change what is for us.

On a good note, she had her first echo today and doctor said the repair was great.  So, we are very thankful for that.  Alexa has been playing today.  Lots of family and friends came to visit these last few days.  Thank you for all of your love and support, it really means soooooooo much in these stressfull times.

Okay, I am so sleepy and tired.  Alexa, still needs to get a dressing change on the central line in her neck.  That will also be stressfull, so tired, so tired, and tomorrow is another day full of anxiety.  We are sad for this big set back, but docs tell us it won't take us back too far.  Just makes me sad to see my princess come this far along to know she will be headed back into the OR.  Please again, keep her in your prayers that everything goes well tomorrow.   I leave you with a few pics of the last couple days.

First day she sat up with me out of bed.

Sitting up by herself.

Watching favorite Annie movie

  Visiting with Morgan the nice doggy

Walking down the hall!

Having some fun!

Popsicle prize after long walk.

Just happy to be out walking again.
One with the family....


  1. Alexa is a beautiful strong girl. We are sorry that she needs to got to the OR again tomorrow. please know she is in our prayers. May Jehovah give you the peace you need. Please know we will be praying for Alexa and your Family tomorrow.
    Love your sister
    N G

  2. Michelle,
    I had tears in my eyes seeing the smiling pictures of Alexa. What a joyous gift that is to see. I know from my own personal experience that when you see those smiles it makes all of the stress you are dealing with not seem so bad. We know it could be worse but at the same time it is hard to accept that it can't be better.

    I'm saying many prayers for Alexa's pacemaker implantation. {{{HUG}}}

    Stef, Ryan, Wyatt and Logan

  3. Michelle,

    We will be praying for Alexa today. She is such a strong amazing fighter, I know she'll be back on her feet in no time.

    Big hugs,
    Josie Kurz

  4. I will be keeping Alexa in my thoughts and prayers all day today. She looks so great up and walking around!

  5. Michelle,

    She's so pretty! I hate it that you have to send her back for that pacemaker. My oldest son developed spontaneous complete heartblock and had to have a pacemaker, so I know the feelings you are having about that.

    I'm just thankful that there are pacemakers to treat it!

    Praying that this surgery is a complete breeze-so much so that your little beauty surprises everyone with her recovery.

    Take Care!
    Lisa @ All That and a Box of Rocks
    Eli's mom-CHD survivor
    'Lisa in TN' @ Baby Center Heart Boards

  6. I found your site through another one. I have a son who has a heart problem tricuspid atersia tga,asd,vsd. I will pray for your little girl. She looks like she's doing wonderful. My son's blog is www.adampeanut.blogspot.com

  7. I am so sorry Alexa has to have the pacemaker surgery....I continue to pray for her!!! She looks beautiful and STRONG on the pictures.


  8. I'm so sorry that Alexa has to have a pacemaker Stay positive! Lots of people live happy long lives with pacemakers!

    Love the smiley pictures of Alexa! She is such a fighter! She is just an adorable little girl and such an inspiration! =D

    I continue to keep Alexa, you, and the family in my thoughts and prayers!

    Hang in there! May God comfort and guide you!

    Sending LOTS of **Heart Hugs**!

    With LOTS of Hope, Love, and Faith,
    Lauren (22yr. old w/Tricuspid Atresia, HRHS)

    Blog: www.laurensheart.blogspot.com

  9. Hi Michelle...

    We're sorry she has to go back to the OR. We will keep you in our prayers.
    We loved the pictures of you all with Alexa... She is so cute... I loved the pix with the Dog...

    I loved talking to you the other day. We will talk again soon. Sending you kisses and hugs to you.


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