Precious Presley Update ...

Someone needs to tell Miss Presley that her momma HATES roller coasters.Actually,I am not certain whether Kele likes roller coasters or not ,but I do know,without a shadow of a doubt, that she does not like the one she has been riding the last 2 weeks.

Presley has been keeping everyone on their toes in the PICU,that is for sure.Things have seemed to finally leveled off but it does seem to have been a constant battle of wills up to this point.Vents setting adjustments.Up then down, then up and now consistently down again.Which is a good thing.Presley is off the high frequency vent and has transitioned to the standard vent like a champ.Getting her off the oscillator was a positive step forward,so having her tolerating the new vent well, is a definite blessing.Medication being brought on board for one thing,which adversely effects another and has to be offset by yet another.Then there is the fluid retention.One day her little body seems to have gotten rid of most or at least some of the excess, only for Kele to come in the other day and wonder who the heck the little bloated love before her was.


Presley has been fighting a urinary tract infection and it was decided that her catheter should be removed as to eliminate the potential for reinfection but in doing so they did run into a scary period of time for a bit.Once they removed the foley,Presely was not outputting urine on her own.Multiple attempts to get her going and subsequent ultrasounds to look at her kidney function left them with limited options.She needed to void that urine or there would be bigger issues to contend with.After one final quick catheter and a whole lot of pee-pee dances going on,she FINALLY went and continues to output in a consistent and timely fashion.Thank goodness.

The little butterfly has reached the 2 week mark since she was intubated.Everyone,including the doctors, are anxious for extubation.Over the next several days they will focus on trying to wean her more, with Presley ultimately being the one to run the show.They will take her lead and push it as much as they can as not to stress her already stressed tiny body and more importantly, her lungs.Kele is understandably concerned about Presley and her ability to come off the vent with out incidence, as she has never been intubated this long before.If you have ever had a child intubated,especially a child with Down syndrome,you know what an if'y proposition this can be.Our prayers need to be focused on an effortless extubation for Miss P.

Now to the next area of prayer:Kele.Kele is,in her own words,really depressed.The toll of the last few weeks,emotionally and physically, are catching up to her.She is sad and although she can see a light at the end of the tunnel,she is in a real funk.One can only imagine how she is feeling and if you have ever found yourself in a similar situation,you in fact know all too well.Prayers in great abundance for Kele and her worried heart and exhausted body.

I think I have covered it all.I sure hope I did.Love and prayers to the entire Giles family as they continue with great hope and faith, till they bring their precious little love home.