You may be thinking that this is a lot of work and worry for a little bit of itching and reaction and under normal circumstances you would be right, but the problem for us is that the reaction is so close to her central line site that can easily become infected which would lead us to far greater problems. Bernadette’s skin is so thin and frail and the nurse at Children’s said the fear is that the skin will break down causing more serious problems. This isn’t the first time that Marc and I have questioned the decision to keep the Central line in. It seems to be causing far more difficulties and discomforts than what Bernadette would experience with drawing blood and an IV for blood transfusions. Down the road that may change as we were told that getting an IV into her when she is totally dehydrated is very difficult. deep deep sigh So we plug along and hope and pray for better days.
Speaking of days, this week it was almost funny. For the first time that I’ve known him, Marc was lost as to what day of the week it was – more than once. He sounded like a stay-at-home-mom who only goes out once a week and the rest of the time all her days are so blurred that she doesn’t know what day it is. And in a way that is what he is doing. His days are totally spent taking care of the rest of us and Zoe in particular that it is no different than being a stay-at-home-mom only he’s a stay-at-home-dad. He is doing a wonderful job of taking over almost all my duties so that I can be available for Bernadette. What would I do without him? Don’t even want to imagine it.
It’s interesting how all our lives have really changed these last three months. We’re learning, as a family, to put each other first and take care of each other and how it’s the only way we can survive this difficult situation. All the kids have put their ambitions aside to be available to Marc and I, even if it’s just to vacuum, clean bathrooms, be an extra pair of hands for Zoe, or play with Catherine. It’s like we’ve been removed from the hustle and bustle of the world and instead of being ‘human doings’ we’re becoming ‘human-beings’. It’s not like we’re not always ‘doing’ something, but not in the same way. Our every action is filled with meaning and purpose to help us all just get through today. No activity is in vain or wasted time and energy. Every moment of every day counts and holds meaning. I’m also learning so much about my children during all this, it is incredible. To have such amazing people around me every day and to have been somewhat blind to it. Then again, adversity can bring out the best or the worst in us, and in our family it is definitely bringing out the best.
I also believe that it is the prayers and support from everyone else around us that makes this even remotely possible to endure. God has been extremely generous and gracious to us to put such wonderful people in our lives and we are so so so grateful and blessed. Thank you for your prayer support, it is the life-blood of our existence right now. Now we are off to Mass to give praise to God and thank Him for His many blessings, all the people in our lives, the blessings that they are to us, for each other, and of course last but not least for God Himself who loves us and sustains us. As a dear lady has as her email signature and reminds me, “God is good – always.”
Thanks for your continued sharing!
I know those dressings can be a real challenge on the skin.
I have a couple of thoughts:
– benadryl could help with the itch and help with the reaction …it will other cure the problem however… but then check with the MD as she might need a lower dose due to her decreased liver function
– I wonder if getting a PICC line inserted might be better. It is a line which is threaded from a vein in the arm and ends up in a larger vein above the heart …..where her present central line is.
We continue to pray !!
Bernadette is such brave girl. Your sharing allows us to walk beside you. Jesus is carrying you all. He will never leave you in good times and in bad!
He is your caregiver, your provider, healer and joygiver!! Praise be to God,forever and ever, Amen.
Lots of hugs and kisses to Bernadette and your family from all of us.