Monday, October 24, 2011

{Surgery Day Twelve}

Today was another stressful and eventful day!  Last night Angela once again did pretty well with her pedialyte through her j-tube - but again it's just not good enough. Today Angela went downstairs to have a PICC line placed so that we can give her nutrition intravenously and give her belly a break.

After about thirty minutes into the procedure the team came out and told me that they were unable to place the PICC due to Angela's poor vein access.  They decided that a central line would need to be placed.  This line is kinda the same as a PICC but the risks are much greater as the catheter in down deep near her heart.  

We have a long history with Central Lines -- I hate them.  Actually I have a love hate relationship with them.  They saved our little boys life and will do the same for Angela, but my view has been tainted by the too many to count infections.  But again Angela's underlying condition is very different, but I can't help but feel anxious for her.

So tonight she will start TPN and give her the much needed nutrition she needs and deserves. The plan is to keep running the pedialyte at 10ml/hr and then start to slowly switch over the half strength formula at the same low rate.   It's going to take time.  I'm not sure what the long term plan will be -- if we will stay here or will go home with the line.  The thought of doing TPN again at home kills me but of course we would love to go home and we would totally make it work.

Angela's GI issues are most likely stemming from a crazy autonomic issues she is having due to the surgery.  Her BP is through the roof, she is flushed and breaking out in stress rashes, her heart rate is all over the place and her bowel are just not receiving signals from her brain to move and process the food we are giving her.  Again, she will get better and clinically she is doing just fine.  It's just a waiting game for her body to calm down.

In other news, Angela and I went shopping in the gift shop today for some hair accessories.  That makes it all better right?  Angela's hair is way out of control and I'm going to work some magic in the morning to try to tame her afro.  Not only will she be pretty but we'll have something to do to break this horrible boredom!

Never lose hope.


Kelly said...

Still praying for your sweet family and Angela's healing. You are such an amazing mom.

Kyla said...

This stay was probably a much bigger and more difficult trip down memory lane than you expected and I pray that God is holding you up and carrying you through it all. I hope that the central line will be temporary and help her system to get the peace it needs to recuperate.

Phyllis said...

Sorry this has become so complicated. When you think about all of our special needs kiddos medical issues the fact that all of this stuff works without incident in our typical kids is even more amazing!

Karin W said...

my heart goes out to you and little Angela. My Estelle has crazy curly wild red hair that is difficult to tame. I loved that little piece of "fun" in all the bad.