Counting Down

We are counting down in more ways than one.  We have our phone timers set to the next morphine dose, we got an increase to the basal rate tonight on our second nursing visit of the day as well as the frequency, every 10 minutes now, but the nurse screwed up, I questioned it, she changed the rate to every 10 minutes, but forgot to increase his max doses an hour so we got locked out after three doses, she told me I was wrong.  We then were advised to give our child who can hardly swallow, morphine by mouth every 10 minutes until they could get here to fix it.   Poor Connor was awake and in pain (there is nothing like seeing you child in this type of pain, this is our third time really, really seeing it, through tears I told the nurse his physical presence was giving us comfort, but not like this, it would be just plain old selfish of me or anyone to want him to continue to endure like this) , we gave him morphine orally until we were no longer locked out and started with the pump again, shortly before 10 when we would be locked out again, the nurse got here, we upped the basal rate again and fixed our on demand dose and she gave us permission to give Ativan early.  She will be checking in later tonight to see how he is doing, he finally seems to be doing better.  

  
In addition to this,  we have been without Amanda for the first time since she started during stem cell cycles (everyone deserves a vacation, especially her) and boy have we missed her!  Yesterday, Claire decided she did not want to go to school without Amanda, but when we finally got her out of the house she was fine.  Today she wanted to go because Daddy was driving her, and she knows all about the special sun roof in his car so went,

 
But when she got there the power was out so school (camp) was cancelled so we had to scramble to get coverage for her, yesterday it was my mom, today Grammy and my sister.  Through it all she continues to be our light, it is really hard to be sad around someone as happy as her!

 Loving her twin:  
Doesn’t everyone watch TV like this?!

  

Obsessed with her shadow and “shadow puppets”!

  

Is that Claire or “Pete the Cat”?!

  

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2 thoughts on “Counting Down

  1. This made me so sad and angry. It is too hard to watch your child in pain. I’m glad you got it managed.
    Claire radiates in these pictures. It is easy to see her being a happy ray of sunshine. Very much needed in your days now and always.

  2. My insides are knotting up just thinking about Connor and his pain. Excruciating as a family. Praying for your strength and stamina as well as comfort for Connor. God Bless.

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