12/13/12

A light at the end of the tunnel...

We are starting to see the light at the end of the tunnel!  You know the one of which I speak... home!  Our apartment anyway!  It looks as though we will be getting sprung on Bobby's birthday (Wednesday) next week!  Happy Birthday to Bobby!  At least that is the tentative plan anyway.

It will be so nice to get out of here, tomorrow marks us being here a month, and a month is a REALLY LONG TIME to be living at the hospital.  Carla is more than ready to go and we are so ready to get back to normal.  And honestly, I don't think Carla will be able to get back to normal without going home. Day by day we see  improvement, but the safety of home is what will give her back the confidence and spark that really is "Carla".  Right now she is in a place that has taken all of her power away.  She has been miserable and been put through the wringer in ways that no adult could probably even handle.  Getting her back to the safety that is "home" will really do a body good!

I think we will most likely go home with the feeding tube in her nose for medicines.  I will be completely floored if she is going to be willing to take all the meds they need her to take, and right now, especially when what she puts in her mouth is the only thing she really has control of, it's just not worth the fight.  We know that before the surgery she was taking her meds like a champion.  She will get back to that point, but it will have to be in her own time, and it's not worth trying to battle her, just so that she doesn't have to have the NG tube in her nose.  Right now she is taking 14 different meds, that's right folks... 14!

Day before  yesterday and today Carla has been getting a big infusion of thymoglobulin (sp?).  Her Cyclosporine (rejection med) levels are not high enough, so they are giving her these infusions so that her body doesn't get the upper hand on her new heart.  Before they give the thmoglobulin they have to give her a pretty good size dose of steroids via IV... unfortunately, the steroids cause serious emotional reactions, so all I can say is that it will be so nice when we can be off of the steroids.  Right now she is on track to take them through the first week of February, but they will taper the dose down weekly.

All in all things are good.  Carla has actually fallen asleep snuggling with Bobby, which is such a blessing.  Bobby was going to go to work tonight but then Carla was having an adverse reaction to the steroids, so he was able to stay with us... as soon as he got back she started acting so much more normal.  Sometimes a girl just needs her Daddy...


We are so blessed.

Love, Jen

2 comments:

April said...

So happy to hear Carla is doing better, I think you're definitely right about the difference home can make, we are praying she gets released soon. We love you and you are always in our thoughts.

Love,
April, Kevin and Liv

Lisa Luke said...

Praying you get to take your little girl home next week! Our doctor always says that home is where our little ones heal the best. (smart man I say!)

Love to see her little smile back. But I'm sure not nearly as much as you do!

Continued love and prayers!