Still Outpatient?

Since my last update, Sierra has been doing fine.  Her labs have returned to a normal level, however, her weight is slowly trending up.  All part of that "balancing" that needs to be done.  She has labs drawn Monday, Wednesday and Friday along with weight checks.  On Wednesday she has clinic where the doctors want to physically see her.  She has acted and felt great.  However, she did have one episode where she became pale and nauseous and just about passed out on me.  We were walking to a friends house and just started a brisk walk when it hit her.  The heart monitor that she has on showed no abnormal heart rhythm.  So, either her heart is getting weaker and couldn't handle the brisk pace, or it was a freak thing that will occasionally keep happening.  I'm betting it is the latter.  Which makes me nervous to talk to the doctors today.  They have checked in daily to see how Sierra is doing, except over the weekend.  I am nervous that once I tell them of her episode, all bets are off of us staying outpatient until transplant.  I do have an argument in place that hopefully they will accept, and allow us to stay outpatient. 

On a lighter note, we were able to get into the Ronald McDonald House yesterday.  Our home away from home.  Not our old room that we had, but a nice room that we are very grateful to be in.  Our friends in Palo Alto, as always, have gone above and beyond to welcome us back.  We are so very blessed both here and back at home where friends are helping with meals and kids.  THANK YOU everyone!!

I'm sure the burning question is, "Will we bring all the family here again?"  The answer is,  we don't know.  Typically how this has worked (at least the last 2 times), is I come with the child that needs to be here.  The other kids finish out their activities and school at home.  Once they are done we then see how the "sick" child is doing.  If they are not too bad we bring everyone.  IF they are really sick and in the CVICU, they need their parents full attention and make it more difficult to have the other kids here.  So, for now we will wait and see how Sierra does and continue on with life.  We want more than anything to be all together.  Gage will have a full work up appointment after June 4th, as his echocardiograms have shown that his heart is getting bigger.  Even though he is on as many meds as they dare give him for now.  Lindsey will have a biopsy July 8th, which will bring her down here.  So there are appointments that we already had in place that will bring the kids here.  We will just have to wait and see, and we will get a "feel" for what the right thing to do is. We always do.

Sierra enjoying some shopping time.  Loving the crazy shoe styles.

Lunch with friends.  Love these ladies.

Sierra loving dessert. 

Trying something new, "fries with eyes."  Not too bad.  A testament that anything deep fried and breaded can be good.  Even anchovies. 

 

Being brave to take her first bite.  She liked them so much, she wanted to back and get some more.  Not sure that would be in her diet.