Monday, May 31, 2010

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.

17 comments:

Stephanie said...

Christopher is 6 1/2 now. He hasn't been on the vent for over a year, and there was a year before that that he was vent free. HOWEVER, his tally is 30+ times on the vent....If you do the math, it averages about every 3 months if it had been spread out. It wasn't

I fully think that docs push our kiddos too hard sometimes. I am not there and don't really know what is going on, but Sweet Tigerfly has enough going on. I think the docs sometimes forget that the vent is a TOOL, just like an IV. We all know they don't pull those until past absolutely neccessary (wink)

Will be keeping them all in our prayers, with a few extra for Mommy.

Hope you all are enjoying the long weekend!

hugs!

Steph and Christopher

Sweet Pea's Mommy said...

Thank you for the updates on Presley! We will continue our prayers!!!!!

Denise said...

Poor, poor Presley...I can't stop thinking about her and worrying about Kele. It simply must be time to start making some great strides in the right direction. My prayers will definitely be heading towards TX tonight. Thanks for the update!! You really are so good at updating for us all, Heather. Maybe you should just start charging for it :)

Kristen's mom said...

Could I possibly get an address for the Giles family? pollykirton@hotmail.com

stephanie said...

Thanks Heather for the update. I was hoping for better. I know Miss P will do things her own way and of course in her own time.
I'm just impatient. I want everything better!
Prayers, prayers and more prayers...

my family said...

Heather, first of all I would like to say thank you for keeping us all updates. Kele and the entire family is in our prayers, it is to say the least, time for upward trend for Miss P. Praying for God to give them comfort and Kele will be up to her self soon once again, I know this is draining as a parent when there is nothing you can do to make it all better

Suzie said...

Thanks for the update

Gabriela said...

danke. Ich muss so oft an die Familie denken.
Herzlich
Gabriela

Googsmom said...

{{{{{{HUGS}}}}}} and many, many Prayers for all involved!!!

To Love Endlessly said...

thank you for the update and we will certainly be praying for tiger-fly and her mama. I'm glad to hear that she did void on her own. That's 1 step in the right direction.

Angi said...

Saying a prayer, I know that ride all to well, my niece was on it..not fun, she sounds like a very strong little girl! She can do it!!Positive thoughts for Kele and Presley and family!!

Anne and Whitney: Up, Down and All Around said...

thank you so much for posting the update - i have just been waiting and waiting to know how kele, presley and their family are doing... i really hope she can be extubated soon!!!!

Tina said...

Was definitely hoping for better news, but as long as things are going in the right directions I feel positive. I can only imagine how exhausted emtionally and physically Kele must be feeling and I will be praying for Presley as well as Kele.

Slow and steady is good and I remain positive about the outcome. Sending healing energy to the little butterfly and praying for better news soon

Peter Olson said...

Praying for Precious Presley and the Giles Family.

"Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective." James 5:16 (NIV)

Lori said...

Thank you for keeping us updated. We will be keeping Presely, her mother and her whole family in our prayers.

Joella said...

Heather.
thank you so much for keeping the blog family updated, I know Kele is very thankful for you doing it. And thank to everyone for all the prayer for the butterfly, it was much needed, .GOD is good and his prayer doesn’t go unheard or unanswered.. And through all the prayers, family, cards, text and phone call has been how Kele and Mike was able to function and get through these past 16 days. The butterfly has came out of her cocoon and almost ready to flutter her wing again...GO Pres GO.. Cant wait to see her and hold her slow and steady baby girl (from the Giles family nanny-Joella)

Elisabeth- Truly Blessed said...

Praying for sweet Presley.
In Him,
E