April 9th 2011. Day +29.   6 comments

As we expected, with 1000mls of fluid, Charlotte had several wet diapers last night.  She did ok when we changed her, but I am sure she could have slept better.  It’s only been one day and I am already not feeling the love for the fluids.  Amy laid in the bed with her most of the night to make sure she didn’t get her IV line caught or tangled up, and I took over in the wee hours of the morning.  Amy was right on the money this morning with her steroid at 8:15 and she ended up waking us both up.  So we started our day with the usual frivolities.  Diaper and outfit change with a lathering of hydro-cortisone followed closely by blood pressure check (high as usual, 148/104) and associated Isradipine to bring it back to normal-ish.  Then the good times continued with Charlotte crying while we got a few oral medications in and, finally, her IV tubies unhooked.  All in all, it was a very busy, unorganized, miserable first hour.  But Amy and I are certain it will get better as we get more experience and Charlotte, bless her little heart, gives in and just takes the medications.

Grandma Wags picked up Molly from Grandma E’s house and arrived at our place at 10 this morning.  We were all happy to see her and she looked happy to be here.  We can start being more of a family again.  Grandpa W still has Broadway for a while yet as we get more settled in and less likely to make emergency hospital trips so he will be joining us eventually.  Grandma W stayed with us today to help watch the little ones while Amy and I (mostly Amy) tried to put the house back together and unpack our hospital bags and boxes.  It was a very busy day.  Charlotte still was a little moody during various parts of the day, but other times she was very playful and happy.  All of this is pretty common while on the steroids.  Her rash was looking pretty good when we checked on it today so hopefully it will stay that way and they can maybe lower the dose soon.

Amy started to give Molly some cereal today and it was met with mixed results.  We will try it again tomorrow.

CJ ate very good today.  Grandma W made her special noodles and Charlotte even had seconds.  She is loving her cereal and milk again now (requested it three times today) so we are happy about that.  She drank about 8 ounces of water today too so hopefully she can keep that up and they can start to think about lowering the amount of fluids.  She had no major bouts of pain either so we would love to be done with that.  She did seem excited for her bath but as soon as we had her arm wrapped up and were ready to get her into it, she had a mini meltdown.  So it was a pretty quick bath.  That makes us sad.  Because she loves her bath times.  She has often spent more than an hour just sitting an playing in the tub before…maybe it will get back to that again.

Tomorrow will be busy again with more work to do around the house and Grandma W will hang out with us for the day yet.  Sometime soon we will have the house put back together and our stuff put away…then maybe we can relax.  It was a trying day today and it will likely continue to be.  But we know that this is a tough time.  BMT is not like our normal chemo rounds and she has been through a hell of a lot in the past 5 weeks.  We both think she is doing pretty damn great and we are so proud of her and how far she has come since September.  It has been a long 7 months and we are looking forward to our new normal life.

Posted April 9, 2011 by L. Elske in Uncategorized

6 responses to “April 9th 2011. Day +29.

Subscribe to comments with RSS.

  1. I’m darn proud of all of you!! So glad you’re able to be more of a family now, too. Things will all settle into a routine sooner or later. Just being home is great!!

  2. Wow! You all did it! Now you can set your sights on clear sailing. And what a happy ride it will be! I know exactly what you all are going thru and trust me, there are many, many more delightful days coming your way! I will love seeing smiling faces once again (when the time comes). Love to you all! Dawn

  3. Love and blessing to the entire family! Welcome home. We continue to pray for Charlotte’s immune system to grow strong and for things to come back to “normal” in your home.

  4. So thrilled to hear you are home!! It will take a bit to get back to ‘normal’ but it will come.
    Blessings to all of you, and keep up the good work.

    Fred & Della Dartt
  5. I’m a coworker of Gramma Wags. It is nice to hear you are all home together~I pray for Charolette and your family everyday. Blessings.

  6. We are so glad that you are all able to be back home together! What a relief it must be even if things aren’t quite back to normal yet. We think of you all often and keep wishing the best for little Charlotte!!

    Nikki and Patrick

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s