Matters of the Heart

Today is one of those days where I'm just not getting a thing done.  I'm walking around brain dead and a heavy heart.  There are two many reasons to list why I could be feeling the way I am.  Could be all the reasons or it could be none.  I guess at this point I don't really care why or why not because it's just the way it is.  Tomorrow could be the same or tonight I could feel better but now everything just feels hard.  Little things fill my eyes with tears.  I am battling frustrations with this and trying to just be at peace and know it's OK to feel this way.  I get frustrated because I just want to feel joyful and light-hearted.  Frustrated because I know I have so many things to be thankful for, to find joy in and that fill my heart with awe in the goodness that surrounds me!  So anyway, I guess this is why I decided to set aside the duties around me for a while to write.  The kids get to play outside in the beautiful sunshine and the dishes, floor, laundry, closets, school prep, etc. can just wait a bit.  I need to write.  I need to ask for prayers.  I tend to try and stay positive, to want to just sit back, lean on the Lord and say, "it will be what it will be."  and it will be OK and it will pass and we will survive because God has been with us always and he isn't going anywhere.  He's led us, He'll continue leading and providing and blessing us through whatever comes our way.  I know this and find comfort in this but I also find comfort in knowing that who ever reads this knows what's going on, is thinking of us, praying for us and maybe even spreading the word to other faithful Christians who will also pray for us!  I feel strengthened by you and your friendship, love and prayers.  I feel part of a community and not so alone.  So, thanks.

I don't want Thomas to have heart surgery.  I really, really don't.  

When Rob first came home to tell me that he heard from the cardiologist and heart surgery was a must.  I thought, "ok, another trip to Dallas for another procedure."  Obviously, it hadn't really sunk in what the Doctor had said.  

This was what the cardiologist had described to us before his sedated echo.  1 ASD of moderate size and one pulmonary vein not hooked up correctly.  Instead of going back into the Left Atrium there it's going back up and around to go back into the Right Atrium.  After the sedated echo they found an additional hole of moderate size the cardiologist called a Sinus Venosis ASD.  I have no idea where that one is but it's just making more O2 blood go to the wrong place and making his heart work harder.  The other thing they found is that it's not just the Left Pulmonary vein that drains back up instead of into the left Atrium, it's the Right one too.  She called it partial veins, I think.  So instead of only 2 places, like shown above, there are 4 places where extra blood re-drains into the right side of the heart.  She said the Rt Ventricle looks a bit bigger than it has in the past.  I think that means it's enlarging b/c of the extra blood flow.  

The cardiologist said that it's hard with Thomas because he's such a gray area  of medicine.  (I applaud her for admitting this)  They don't know exactly with Thomas but with other genetic kiddos they've seen this type of thing lead to Pulmonary Vascular Disease.  (I still have to look that one up)  I think this is why she feels more urgent now to perform surgery on our little Sweet T.  

So here's where my sadness comes in.  Another cardiologist was reviewing Thomas' reports from all the specialists and noted that Dr Danbro, our pulmonologist, stated in her report from the bronchoscopy, that Thomas has a soft, floppy and narrow airway.  This cardiologist recommended to Dr Hess that we wait on surgery till his airway hardens because he has had children who they try to get off the breathing machine after major heart surgery and they can't because of the airway being soft, floppy and narrow.  The result was that they were sent home with a tracheostomy and home ventilator.  There fore this doc recommends waiting till his throat gets bigger and hardens.

  

Here's the tricky part.  The pulmonologist said that she has seen in genetic kids it taking as long as till they are 10 years old for their throat to harden and get bigger!   The cardiologist said that we can't wait that long for heart surgery, and she recommends sooner than later.  

I talked with the cardiologist yesterday.  She said she was going to call the pulmonologist and talk to her, herself and see what she recommends.  Her thoughts are that if she says it's a 10% chance that he'll go home with a vent and tracheostomy then we should go ahead with surgery with in the next month or 2 depending how quick we can get our schedules together.  If it's an 80% chance then we'll wait 4-6 months and re-do the bronchoscopy to see how much his trachea has hardened.  

I asked the cardiologist if Thomas did have to come home on a vent and trach how long would he be on them for.  Her response was that she has seen kids be on the home ventilator and with the tracheostomy for up to 3-4 years.  *insert gigantic gulp and instant stomach nausea here*

I don't want Thomas to be on a home ventilator or have a tracheostomy.  I really, really don't.  Really.  

Please, please, please pray that something happens that all of this isn't necessary.  I want a Miracle.  I really really really want a miracle.  

We have had so many answered prayers and I praise God for the fact that we can continue to call upon Him.  I am so incredible thankful for our answered prayers, so thankful for our many blessings, not just for our family as it has grown but over our whole lives!  God has blessed Rob and I each with incredible family, a wonderful childhood, forming us, showing himself to us so we know Him, know His love.  He brought us together and continues to bless us through this great sacrament of marriage!  Our children only add to the many blessings every day!  Thomas and how far he has come from day one feels like a miracle in itself.  He's truly doing amazing and what a joy it is to watch him and our other children, each day grow and thrive and be happy little children!  It's a miracle that the Air Force is sending us to Offutt (surprise! for those who don't know yet!)  Seriously, Divine Intervention, right there people.  The fact we are going there in July is truly amazing and one in a million chance.  DIVINE INTERVENTION.   We're very, very grateful. 

 God, I need another.  Thomas needs another.  Please pray with us over these next few months of moving prep, finishing up school, many, many travels to all different places, doctors appointments and possible high risk surgery.  I know God will lead us, will bless us as he always has.... That does bring me peace.  But I am weak too and your prayers help my heart find strength in Him. 

I want Thomas to keep moving forward, he's doing so well.  I don't want him to be set back.  If he needs heart surgery... OK.  It will only help him, right?  Strengthen his heart, strengthen his whole body....  The home ventilator and tracheostomy.... 3-4 years.... sure, we'd work around it, Thomas would work around it...  but life as he knows it would be flipped.  I want to continue to move forward, hitting milestones.  Not be turned upside down.  

Please pray with me.  

please pray with him.

 Thanks for listening (reading).  I feel a bit better and not so lonely knowing you know what's on my heart and what's going on with Thomas'.  I've cried and expressed my thoughts, now it's time to attend to the duties that haven't miraculously cleaned themselves yet.  (but I think that IS asking too much, don't you?)  

Much love,

K