Saturday, June 15, 2013

I'm so dizzy, my head is spinning

Anybody recognize that song? 

Matt & I met with the pediatric cardiac surgeons yesterday.  They explained, again, the problems with Samuel's heart.  I think, again, that I understand mostly.  They also explained what they need to do to repair things.  Then they explained the dangers.  And there are plenty.  From my very surface understanding, the dangers are not really in the surgery itself, but how Samuel's body reacts to the repairs.  God made our bodies in such a miraculous way that our bodies adapt and modify when something is wrong.  Samuel is still alive today because his body has adapted.  Those adaptations, however, complicate things when it comes to repair.  One crazy thing we learned is that Samuel's hemoglobin is twice what it should be.  Most people's blood is the consistency of water.  His is more the consistency of oil.  Most people's blood oxygenation level is 100.  His is 76.  His body is used to these things.  They have to be careful not to change either too quickly or his heart will shut down.  There are more issues, but honestly, I can't even explain.  Matt looked me when we left there and said, "I think I would have rather been uninformed."  We laughed,  nervously. 

You might be thinking that we knew this was serious and we knew what was coming before we ever went to get Samuel.  You are right.  We now know some of the technicalities, but we knew this heart defect was not a walk in the park from the beginning.  It feels different now because we know and love our son intensely, inexplicably, just like I gave birth to him.  The thought of them splitting his chest open, messing with his heart, putting him on a bypass machine, trying to keep him alive during and after that and all that entails feels way different now.

Now that you're all depressed...the good news.  One of the surgeons kept talking about how shocked he was at Samuel's energy.  He said he expected us to carry in a very lethargic little boy.  Samuel ran around the office, getting into things, talking, busy as usual.  He could not believe it.  His partner said there is obviously some serious strength in this little guy.  Both surgeons also very naturally referred to how God made the heart, mentioned the grace of God, and how we would pray that certain things are or are not the case.  They know the Lord and pray over their patients.  That is an incredible, incredible comfort.  Also impressive was that the cardiac nurse went out into the waiting room while Matt & I talked to the surgeon and explained things, complete with diagrams and a heart model, to Courtney & Cassidy.

Samuel's surgery is currently scheduled for July 18.  The cardiac team will keep researching and keep consulting other surgeons around the country to learn all they can before that.  We will be trying to prepare for Samuel's hospital stay.  It could be a week or weeks.  Our family is tight.  We don't like to be separated.  We will have no choice while Samuel is hospitalized.  Emotions are running high in all of us. 

Here's some specific prayer requests...that the cardiac team will find the perfect information, perfect action plan for Samuel; that we can make good arrangements for our whole family during the hospital stay; that God's peace will replace fear in all of us (extra measure for Cassidy, please); that we will be physically, emotionally, and spiritually ready for this.
Who needs toys when you have paper, pens, and paper clips?
 I was trying to get this ornery little boy to look at me to take his picture.  He did eventually, but this picture shows his personality better.
I was trying to get a good picture of us going to the VBS Friday night program/carnival.  It seems this group can't do that, so here's the real us.
"Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think."  Ephesians 3:20


Sunday, June 2, 2013

Boundaries, updates, stalkers

So here we are, almost 7 weeks from Gotcha Day. Things are kind of a blur to me.  Have 7 weeks really passed?  It's amazing at how far we've come and a little daunting that we have so far to go.  Samuel is communicating with us very well.  I really don't know how well others can understand him yet, but we're getting new (and appropriate) use of words every day.  His sense of humor is sure evident.  Yesterday, the kids and I were visiting with my dad.  I told Samuel to point at his sisters and say, "Courtney is a goober.  Cassidy is a goober."  He complied.  He then turned his pointing finger to me and said, "Mama is a goober."  Yeah, well, he's figuring me out too. 

As for other adjustments, our little guy is testing boundaries every day as well.  If he doesn't stop rearranging and hiding his sister's stuff, we may have WWIII.  As a matter of fact, we are going to put a lock on his closet because he's doing the same thing to his clothes and I am struggling with the daily adventure of finding socks, underwear, and clothing for him to wear.  Unfortunately, he seems to want to test to see if Daddy is just a big playmate or if he really has any authority.  You see, Samuel has a lot bit of a temper, and he saves it for his Daddy most often.  He'll figure that one out for sure. 

On the "think we've got it" front, Samuel is sleeping well and not waking in fear hardly at all.  It's good to sleep through the night and be greeted with a chipper "Hi!"  in the morning instead of tears.  He is also figuring out that his family members do leave at times, but they always come back.  When one of us is away, he asks about them often, but accepts the answer pretty well.  Now, Courtney & Cassidy will both be heading to camp/mission trip in a couple of weeks.  We'll see how that one goes...

On the medical front, we are waiting.  Matt says I need to be patient.  Both Matt and God and anyone who knows me KNOWS that one is a toughie for me.  We have done scans and a heart cath.  The doctors have seen what they need to see.  However, the very capable surgeons have never done a surgery of this kind on a child as old as Samuel.  The typically repair kids when they are about 6 months old.  The cardiologist is researching and consulting other surgeons for their opinions and expertise.  I realize this is a good thing.  Overconfidence can result in mistakes.  They want to do it right.  Got it.  Not patient.  I guess the longer we wait, it's just sinking into me that this is a complicated, risky surgery.  I knew that.  Now that I have Samuel in my arms and see that smile every day, the reality is harder than I imagined.

I blabber on and on. Sorry.   You want to see pictures, right?  Here we go!

Samuel and his animals have a TV watching party.
 Courtney is training up the child in the important things.
 Samuel wants to ride this scooter like his sisters.  He mostly turns it over, but he still likes it.
 We went to visit my mom's grave on Memorial Day weekend.  This pic doesn't show Mom's grave, but two of my precious ones.  She sure loved our girls and she would have loved our Samuel.
I laughingly told the nurse in the recovery room after Samuel's heart cath that I needed to post something on Facebook for the benefit of my "stalkers."  She replied, "They love you all."  I just about cried.  I love my "stalkers" and am SOOOO thankful for you.  We do feel the love.  Keep stalking :)