To itch or not to itch, that is the question.

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Well, the saga of the itching continues, I’m sorry to say.  Actually it has subsided a little for now but yesterday was brutal.  The itching was so bad that Bernadette actually ASKED for a dressing change. Now that is bad.  When I took the dressing off all her skin under it was red with little blisters.  It had definitely flared up more than on Thursday when MJ, the nurse, was here.  With her skin totally exposed we put Calamine Lotion on it and let it dry and gently scratched.  Doing this for an hour gave her such tremendous relief that it literally showed on her face.  Unfortunately we couldn’t continue it as her exit site is being exposed and at risk of infection.  It broke my heart to take off the Calamine Lotion and put on another bandage.   The rest of the morning was spent on the phone talking to nurses and doctors to find some solution to give her more permanent relief.   We were told that she needs to have her bandages rotated as it appears she’s reacting to them all.  So now we have to go back to those Tegaderm I.V. ones that take two hours to get off.  Plus the I.V. 3000 that don’t look any more pleasant.  Maybe with a three week rotation cycle she won’t have time to develop a reaction to one particular one.  She’d been using the Tegaderm one for a month before she reacted the way she is now.  Then the Allevyn Gentle Border Lite was the same thing, she’s been using them for just over a month.  So we’re going to try the I.V. 3000 next.  Only this time we’re doing it a little different.  A wonderful lady, Teri, (specialist in dressings) told me that we can leave the Calamine Lotion on her skin and put the bandage over it.  Yea!!!!   The doctor at Canuck Place also prescribed a hydrocortisone cream which would require daily dressing changes until the skin was totally cleared up again.   Unfortunately the pharmacist can’t get the cream in until Monday.  Monday felt like an eternity away when we first heard it, but thankfully the itching has subsided for now.  I think we’ll make it.

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.”

COMMENTS

By Virginia Pukas
Good morning Dansereau family. I hope today will be a good day. Speaking of itching…….here is your joke for today……ready? . How do fleas travel? .by itch-hiking!!!!! Sending you all prayer hugs. With love, Virginia


By Venee Gunn
Your writing takes me right into your living room and into the thick of things Patti and I marvel at the mysterious blessings you are receiving at this time, the unifying grace given to your family is indeed heaven sent. Thank you for sharing your heart with us at this surreal time in your lives. Your lives are living testimony of a compassionate Father who plays an integral part in all the spaces of our lives. Hugs and love to each of you!!


By
I second Susan’s comment on your beautiful writing. This morning at church I had a few people inquire about Bernadette and because your latest blog came at such a perfect time I ended up reading it before the whole congregation! We had a church prayer this morning for Bernadette and the whole family. May God continue to bless you all and grow you in many ways as you press on.
Thanks for your continued sharing!


By Allan, Angela, Jonas,James, Gabriel, and Mattias
Patti, your beautiful writing is such a gift to all who read. We see and feel it all!
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.


By Susan D.
Amen!

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