Saturday, November 1, 2014

The Update...And Litte Rudy

I really meant to get a post up before Serenity's surgery, but the time was just not there.  So here is the update....

Serenity had her trach placed on Tuesday.  The surgery went very smoothly - Praise God!  But, we were told she would be in a medically-induced coma for at least 4-5 days.  It turns out that this is a very delicate balancing act - they don't want her completely out, but they don't want her wiggling around.  Hmmmm, how do you do that with a human-dynamo?  They are also having to have her in arm restraints (nice, soft bracelets around her wrists, tied to the bed) to keep her from pulling it out - or the NG tube through her nose.

I am just worn down emotionally right hard to get the words to come but this is just HARD.  She is miserable....completely miserable.  The hardest thing for her is that she can't talk or make any sounds.  I have been told that this may come eventually - either from her figuring out how to talk "around" the trach or with a "speaking valve" with the trach.  But for now, nothing comes and it is scaring and frustrating her.  There is no way to really communicate to her what has happened, so it breaks my heart.  Also, being the human dynamo, she HATES being restrained.  She probably has quite a bit of pain around the incision, but it is so hard to know with her what is pain and what is frustration.

Just pray for my little girl - this is so hard.  I could type out in detail all she is going through - but I just don't have the energy today.

We were able to get a meeting with "Home Care" that will train us to take care of the trach.  I keep pushing - to the point of being amazingly annoying, I am sure - that we have to be ready to take her home as soon as possible.  Those that remember her buzzing around the ICU at top speed know exactly what I am saying - but there are so many different nurses and doctors, not everyone knows my little firecracker yet.  We need essentially 12 hours worth of "training" - but they only usually do 2 trainings a week.  WHAT?  We are not staying in the hospital 3 weeks just waiting for "training".  My understand is - and no one has really contradicted me - that she will be ready to be home within a week of the cranio vault expansion surgery on Friday....but most kids stay in the hospital for weeks waiting for the caregivers to be trained and to get a home nurse assigned.  WHAT?  WHAT?  I just can't wrap my head around that.  We are not going to have a home nurse if I am able to do all her care myself - and we need to get this training done!!!  Right now, after talking with them a great deal, there is the potential of being able to get home sometime around the 14th if everything goes smoothly.  Oh, how I am praying for this!  She NEEDS to be home, we need to be able to be with her - the drive there is so long in traffic and it is very difficult to balance all the needs around us.

Yet, even through the difficulty - I am praising God that she is here.  She is in a place that can do these amazing things for her health.  A place that she can live life to the fullest.  This is Handsome and my calling, our ministry.  She is not sitting in an orphanage slowly dying and becoming more and more incapacitated.  This gives me great peace and great strength.

Please keep praying for Serenity's peace and comfort - as well as all the details to getting her home.  The next surgery is Nov 7th.  So close, yet so far away!


We are this little man's Angel Tree Warriors.  He has caught the hearts of several of my kiddos, so we are praying and doing what we can to find him a family.  The goal of the Angel Tree through Reese's Rainbow is to raise $1000 toward his account.  Honestly, without God's grace, I don't see that happening - but the other goal is that we get his precious little face seen.  My prayer is that you see him and his little face stays in your mind - that you would pray for him every time you think of him.  Pray for a family to choose him though there is nothing "special" to his picture and his story on the surface.  But he is a real child - just as real as your favorite child in your life.  He needs a mommy and daddy.  We have seen the profound impact of not having a family in both Serenity and Hope.  Please print out his picture and pray for him!

If God leads you to donate, the link is here.  I see the $1000 as his plane ticket home - but more importantly, I want him to have a family!

Until He comes.....

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