Tuesday, November 18, 2014

We are still here....I promise!

It has been 3 crazy-busy weeks since Serenity's first surgery.....three long weeks.  Honestly, it has gone much, much smoother than I anticipated.  That is the benefit of planning for the worst scenarios - you end up most of the time with a pleasant surprise.  Actually, it is a little hard to use the word "pleasant" when talking hospitals, etc., but you get the idea.

Our anticipated going-home day is the 21st; so just a few more days. But this morning as I am tired and 1-hand typing as Little Man is already up, 3 more days feels like a long time!  Here is a picture of my precious girl from last week:
This was before the skull surgery ("vault expansion") on Friday.  For the surgery, they shaved a once inch strip from ear to ear over the top of her head, but they left the rest of her hair.  I cannot tell you how much relief emotionally this is - something about having her shaved completely would have really crushed my heart.  Now with some creative hair-dos or some big (soft) headbands, we should be able to hide the chevron shaped scar.  When they do future surgeries, they will just keep coming back to that original place.  Again, hard to describe the emotional relief in that.

I would guess that most people would not be able to see differences in the skull/face, but they are amazing to us.  Even though it was an expansion to the back of her head, it has relieved the pressure on her eyes and face, so everything looks less puffy and profound.  In six months, they will do the front of her skull (not the mid-face).  This will probably reshape her face in a much more distinct way.  But I am not ready to think about another surgery yet.  I have to keep reminding myself that future surgery stays will be measured in days, not weeks.  This one was so long due to the trach placement.

So how is the adjustment going to the trach?  Ummmmm, Serenity has made it easy.  One of the biggest things with the trachs is that they can get clogged very easily with the secretions from the lungs - which therefore blocks of the breathing - immediately a critical situation.  Well, Serenity has such a hard, forceful cough, we are rarely having to suction her beyond "maintenance" cleaning.  She also figured out how to "talk" around the trach within a week.  This is amazing!  It also gives a safety factor of her being able to communicate to us if something isn't quite right.  Handsome and I are finishing up the last of six classes this morning on trach care/emergency care.  It is a little scary, honestly.  But I keep reminding myself that God was sovereign before the trach, and He is sovereign now.  Serenity is never out of His Hand.  There is great comfort in that.  If I trust His plans are perfect - even when I don't understand them - then I can rest in His Hand.  This does not mean that nothing bad will ever happen - and that the pain wouldn't be devastating - but it does mean that nothing will happen outside of His perfect plan.  Ever.

I had planned to update the blog every other day or so with new prayer requests and updates.  But then real life got in the way.  By the time I get home from the hospital and give everyone some lovin', I am so tired I just sit and hold someone until it is time to start the bedtime routine.  When I get up in the morning, my time with my Savior takes precedence - and I need that time so desperately! - and then it is time to start the day rolling again.

I am so humbled and grateful for all those that have helped us - my parents, Grammy Caroline, my sisters, Handsome's parents and those from church that have brought meals.  It amazes me that so many people would give so much for my family.  It is amazing too, how knowing that someone else is bringing dinner is such a relief.  The very long drive home from the hospital saps the last of my energy.  I have a huge amount of compassion now for those who have to commute in traffic every day.

Today, a home care rep from the hospital is bringing all the supplies and machines we will need.  I have found in the past that it is a little unnerving to see all this "hospital" equipment in my home.  All of the sudden it makes things feel very critical and scary, even though it is all here to help us.  I am trying to gear myself up for that.  It will actually be nice to have a day or two to get everything arranged and in place before she is home - though I would prefer to have her home instead!

I need to get the day rolling - but I know it is bad when The Testy Chef says, "Mom, you need to update your blog!".....Thank you for all the prayers and support, I can never tell you what it means to me.  Please pray for peace and strength for these last few hospital days.  Thursday and Friday will be a little more difficult as Grammy and my parents are flying out for much needed vacations.  In God's grace, they were scheduled long before the surgeries - I know that they would have been cancelled otherwise.  But it I see it as such a gift to them all after some busy, busy weeks.  Pray for Serenity's peace.  I am afraid that she thinks she has just been moved to a new orphanage.  On Saturday, we did see her dealing with some depression, poor baby!  Yesterday, we finally got the "okay" to take her anywhere in the hospital, so The Helper and I took her to the cafeteria.  She was so excited!  We will do the same today after the last training.

I am anticipating a wonderful Friday night with us all home together again!  Handsome has spent almost every night at the hospital - what an amazing, wonderful man I have been given! - and if he is home, I am at the hospital....just need us all together again.  I have told the kids that Saturday is just a "jammie" day.  They looked at me like I had finally lost my sanity - I am never up for just a "jammie" day...but it has been a long three weeks!

May everything be to His glory!

Until He comes...

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