Progress ~ Update 7

I've been trying to write this update for a while and so many things have interrupted me from finishing it including of course just caring for Alexa and my need for some sleep.  

Although Alexa is still feeling pretty crummy, good progress has been made.  Alexa lost her catheter last night and her chest tubes today!  She is also only on one IV heart med plus some intermitent Lasix.  She is on a liter of oxygen via nasul canula, mostly as an extra support since she is being given some sedative and pain meds as needed.  Docs are amazed at how well she has progrssed and honestly so are we. 

Last night was also better.  Alexa was able to rest for longer intervals.  She is no longer holding her breath but she did have periods were she became agitated, moaning/groaning then her sats dipped and she had some trouble breathing.  When we noticed this was happening we would sit her up and give her those chest pats and that would help her move/clear some of the fluid that was accumalating in her chest/airway.  Of course coughing hurts a lot right now, which is why she chooses not to.  But even when tiny little coughs come out she does better afterwards.  After these short episodes she would again go back to sleep, so that meant I also finally got at least an hour straigh of sleep and it was wonderful!  Mostly before I was surviving on 5 mintues of dozing off here and there.  As of 9:30 pm tonight she has been sleeping very comfortably and peaceful.  I think this is the longest period with uniterrupted sleep she has had since surgery, almost 11:30 p.m. so it's going on two hours.  Sleep is essential for healing so I hope she continues through a mostly peaceful and restfull night.

We also were having major trouble with the monitors false alarm beeping almost all day long, because it was having trouble communicating with her external pacemaker.  Finally at about 4 p.m. they brought in a 5 lead cable and that seemed to do the trick.  We were finally able to get some QUIET sleep, I think for a little over an hour.  And that was so wonderful for all of us!  Dr. T also wanted to get Alexa out of bed, so I got to carry her on a chair.  They want to do this to get the fluid moving.  After the x-ray yesterday, they said she DOES NOT have pleural effusions which is great.  She does still have some wetness in her chest and sounds junky a lot.  But this is better than the pleural effusions which basically means fluid accumulating around the lungs mostly underneath.  Todays xray looked better than yesterday's but still "not too hot" as one doctor put it they will be doing another at about 4 a.m. - for those not familiar with the PICU world, it is a rule they must come to bother I mean check on you at least every 2 hours, so any normal sleep for the parent or the patient is thrown out the window. 

The big deal is that she is STILL in COMPLETE HEART BLOCK.  I am very sad over this and worried.  I do not want her to head in for another surgery when she is just healing from this one.  The surgeon told us he will not be worried about it until the weekend.  Still hoping it returns after some swelling goes down.  I REALLY REALLY REALLY hope so.  Alexa is just so agiated at this poing and cry's whenever anyone tries to come near.  She only lets me (most of the time) just hug her but I've been the bad guy on occasion, so she has even pushed me away.  It is so very sad.

She took couple little sips of water today and a couple bites of a cookie.  Other than that she is not interested in anything to eat yet.  Nothing makes her smile. Hoping tomorrow she will feel better. She did clap once today at getting some water and said our Dogs name so that was a tiny glimpse of her today wanting to shine through, mostly it was gray though with her feeling down. 

The surgeon told us he was able to use a 16mm contegra valved conduit.  I was expecting for him to be able to use a larger size but he said this one fit and lay best under her breast bone.  He said hopefully she will get 4-7 years out of it before needing a replacement.  At that moment my heart got sad yet again.  Thinking of seeing her through another surgery.  Knowing this is not her last.  It is so heartbreaking.  Since I was already pretty much running on fumes the thought of future surgeries was enough to almost want to make me want to shrivel up.  But I have to keep my chin up.  My hubby asked me today how I was feeling about the pacemaker because he was not sure how to feel.  I told him that yes it was hard, and although I want to feel pitty for us at times and hate that our daughter is going through this, I think and I have learned that it is best to count your blessings.  Be grateful for what we do have and that although so very hard her condition is treatable.  There is hope.  I have hope for today, tomorrow and her future.  Hope and faith knowing that no matter what life throws at us, we will get through it with by the strength of God and the wonderful love and support of family and friends.  We have shed many tears since our journey began, but it is comforting to know that every one of our tear drops is precious to God and does not go unnoticed.  Thank you for your continued prayers on our behalf.  It feels great knowing so many people all over the world are praying for our baby.  Thank you again so much!

XOXO