The plan that is always changing

This whole process with Sydney has been very tiring, so tiring, I could not update last night.  I went to bed instead....snuggling with my 6 year old.

Yesterday's update: Sydney had better sats today (upper 70's lower 80's)....but only when laying down or still.  Her O2 levels drop big time with any exertion (in the 50s) just going potty...just standing up would make her sats drop.  What is going on!  What is this happening!!  The PICU  recommended Sydney go on bed rest....not even get up to potty (use a bed pan). Cards did not think that was absolutely necessary...just do what she can tolerate.  We had some hard questions for cards, and needed them to be straight forward with us.  Cards is really not sure what is going on.  Syd is a "bit of a mystery".  Some of the docs thought Sydney's fenestration just needs to be closed....that is if she is ready now with all of the med changes.  Others, though a cath needs to be done to see if there have been any other changes...and they are not sure if the sats drops during exertion will help. Blood work and an Echo of the heart have been done....all coming back good. The plan was to set a meeting with Dr Lim, and see what he thinks can been done through cath. They will continue to monitor Sydney is a save environment, by keeping her in the PICU. 

Today---- Sydney's sassy spirit is making a come back...she is a little fighter. Her "resting O2 sats" continue to be upper 70's to 80's.  They staff have weened Syd to 1 litter of O2---but again it does not help that much--but it is nice to feel like we have a little something there to help at least a little.  There was a meeting of the minds today, discussing Sydney.  They have all come to talk to us about the plan, and what they think is going to happen.  Everyone has a little different take on the matter, so I will try to make a little sense of it.
1)Pulmonary has decided  Sydney's lungs are great (clear-- best they have heard them) and the cards at this time is the primary issues.  Once Sydney is better, Pulm wants to make a asthma plan, so we will know what meds we can use when Syd has problems at home.
2) A heart cath will be done Friday afternoon.  We do not know what time yet.  
3) The cath will be done under sediation, so she will not need a vent
4) Pressure will be remeasured and look at what progress we have made since Sydney hashad a pacemaker placed, put on Viagra, and is not in  fluid overload anymore.
5) If the fenestration can be closed, it will.  This will help the sats.  If she ends up looking good for closure, but later does not adjust well---she will get fluid on her liver again and her face will swell and get red.  Then they would need to go back in through cath, and put the fenestration back in. UGH...to all of this!
6) See if there are any other "bypasses" that have filled because the hemo-dynamics have changed so much.  I hope this it it and they can coil (close) this bypass, and things will be "fixed".
7) Adjusting the pacemaker to a higher rhythm to see if this give her the needed pressure she needs to create better flow throughout her body.

I hope this is making since, because frankly, I am just trying to figure all of this out myself.  Please continue to pray for my baby girl.  Please, pray the doctors can find her problem...and please God let the problem be easy to fix.  I want to see my little girl run and play again.

Thanks as always for checking in.


Love Christy