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....