Thursday, August 28, 2014

One week after Fontan

Right after surgery.
First time I held her after surgery.
Snuggling on the floor.  Out of the ICU.
Sleeping after 3rd chest tube placement.
Her leg after a few days of lovenox shots.
Getting a little back to normal watching Elmo.
Napping after having one chest tube removed.
Feeling much better.

Today we are one week after the Fontan.  It's so crazy to be on this side of things.  I feel a relief that Raygen has done so well.  She is such an amazing little girl.  She is such a strong fighter.  Raygen's Fontan went well.  She had to have 3 chest tubes, but today she is down to 2.  The drainage has finally started to slow down so maybe in the next couple days we can get rid of one.  One of our biggest issues now is feeding.  Raygen is now on a no fat diet due to draining her protein from her tubes and she isn't anywhere near close to handling the volume that she did at home.  She is puking a few times a day with feeding and I know it has to be so painful considering all that is going on with her chest. We also have to get Raygen on her normal pooping schedule again.  This has been a real sensitive issue for her and it becomes so painful for her.  It is so hard to see her with a tummy ache.   Raygen has been having lab draws and x-rays everyday so far, but today we get a little holiday :)  We do know Raygen will go home on a blood thinner whether it will be shots or an oral med is in the air right now, but either is somewhat scary.  We will have to keep a close on eye on her if she falls or injures herself and also her diet.  Any change could affect the dose of her blood thinner then in turn she would have to have more blood draw to get the dosage back again.
Things will be a little different going home a few medications, but overall she is doing good.  Her O2 right now is 90 and she hasn't had oxygen in over 48 hours.  She is only on Tyenol for pain.
The things are keeping us in the hospital are her two chest tubes, feeding issues, and sorting out her blood thinner medication.  She will also have en echo, ekg and x ray before we leave and they must look good also.  We also need to get her on a better "potty" routine, get our girl regulated again.  So I for see us being her a few more weeks, but in the scheme of things she is doing so good.  I'm so proud of her.  Each day we get more and more smiles and start to see our girl come back to us.  I do wonder what she will be like when we go home though?  Will she resort back into her shell that she was in when she was younger?  I guess we will see when we get there.

Thank you so much for your continued support and prayers.  We are truly grateful.  Please continue to follow Raygen on her Face Book page (you don't have to have an account to see it) because it's easier to post quick updates there.  Can't wait to get home and get back to our normal life and lots of blog posts again of my amazing girl :0)