If you have visited here before, you can probably see that I have changed the name of the blog again. I started blogging at 4URuthie to tell the story of our journey to adopt our 1st daughter. I changed it to Mountains for Maggie when we were praying for God to move mountains on behalf of our 2nd daughter. Well now it is no longer just Ruthie’s or Maggie’s stories. It is now our family's story, and the stories of those we share life with, as we Conquer Mountains together. Both ConqueringMountains.net and 4URuthie.blogspot will lead here.

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I am a pastor's wife, mother of 4 kids (2 adopted and 3 with special needs), physical therapist, and photography junky. This is where it all comes together for me. Feel free to join along as I process life out loud.

Tuesday, December 8, 2015

Update

There is nothing deep and thought provoking in this post.  Honestly, I don't have the energy to think much right now.   This is just an update from room 1514 where the surroundings have become so familiar that I accidentally referred to it as home to the resident this morning.

We had an eventful morning.  Our nurse, bless his heart, is a float and not used to this floor.  He was taught yesterday how to strip her chest tube after it went all day clogged.  He was assigned to us again today and when he went to strip it, he ripped the stitches out of her side that were holding it in place.  He is a nice man and was as traumatized by the situation as Maggie was.  I may have been the only one in the room not hyperventilating.  I honestly felt sorry for the guy.  It is not his fault that they pulled an orthopedic nurse to the cardiac floor.  My favorite surgical team member came immediately and repaired it but said the tube will likely have to come out in the next 24 hours.

I am pretty frustrated right now with the options that are left for us.  Trent and I have been inquiring about a procedure where they inject dye into her lymphatic system and see where the leak is and then repair it there.  The problem is that it has only been done in this hospital twice (it is done other places) and our surgeon refuses to try it because he says there is not enough evidence to support its effectiveness.   I get that but it comes with little to no risk and the other options all have much higher risks attached to them so I can't see why you don't just try it.  I then wonder crazy things like if we were in Boston if they would try it.   Perhaps that is not fair to the team that is working so hard to care for her, but it still makes me wonder in the midst of my frustration.

Our other 3 major options are:
1. Wait until the week after Christmas to do a heart cath and see if anything else is shows up or if she just gets better on her own with her current diet and another medicine.
2. Completely remove food and beverages from her diet for weeks and let her get her nutrition through IV.  She would feel hunger and would be denied the right to eat for WEEKS.  I can only imagine the psychological trauma that could cause.  I also have serious concerns about how this would affect her seizure threshold.
3. To go in and spray an adhesive (Pleurodesis) to her chest wall that would seal up any leaky vessels and cause her lungs to stick to her chest wall and forever impair her pulmonary function.

See why I was really hoping for an attempt at the other procedure?  What do we have to lose?

So here is how you can pray:
1. Pray that God would guide the hands and decisions of the medical team and that we can trust that.
2. Pray for the patience we need to get through this well.
3. Pray for my kids.  I know if it doesn't feel like Christmas to me, it probably doesn't feel much like Christmas for them either.  I want them to be okay when all this is said and done too.



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