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Lucy Baby…

April 24, 2011


After a horrific night it was decided that Lucy needs more long term pain control, the pain management team was called in to consult on Lucy’s situation.  Ketamine was used initially because we thought we may only need it on a short term basis, it is not for long term use.  Lucy was requiring so much of the med that it created a whole slew of issues from high blood pressures to nightmares/hallucinations.  She was put on a blood pressure medicine to control her blood pressures which continue to remain high despite taking her off the ketamine.


After meeting and discussing Lucy with the PICU attending and pain management doctor it was decided that Lucy needs to be put on narcotic pain relief, specifically we put Lucy on Dialudid.  It is ten times stronger than morphine yet not as strong as fentanyl.   If we put Lucy on fentanyl that also means that she would have to go on a ventilator to help her breath.  The fear with putting Lucy on a ventilator is that she will become reliant on the vent for breathing and never come off of it…this is a very scary reality.  Dialudid is a very potent narcotic that Lucy has already proven she needs A LOT of to keep her comfortable.  If her need continues to rise we are fearful that her respiratory status will change and she would need to be intubated and put a ventilator.


Please pray for peace and comfort for our little one as she is struggling to find it.  She is very swollen and itchy.  We started Lucy on IV Dialudid for pain, IV hydralazine for her high blood pressures, IV Lasix to help with the swelling, IV Benadryl to help with the itching, IV Nystatin to control any fungus that we think is forming from the rash on her body, and IV Nubian to help with the pain and itching as well,   in addition to the other five other IV meds she was already on.  Her nurses are really going to be earing their pay today.

I am tired as I have been awake for days…she is finally sleeping and so must I.

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Clarissa said...

Praying!! Easter Blessings to you all!

mito kid said...

Keep Lucy and your family in our prayers.

Monica said...

You are all still in my thoughts. I am sorry she (and you) are going through such a rough time.

I know things are very, very scary right now but please know that with our kids anything is possible.


Laura said...

Your family & Lucy is in my thoughts and prayers. I cannot imagine what you are going through watching your baby go through all this. May God give you strength. God Bless little Lucy!

Sick of the Untruths said...

I've never commented here before but have followed your blog for a while now. I'm so sorry about all of this and will definitely be keeping sweet little Lucy and your family in my prayers.


Jessica said...

Nicole, I'll be praying for pain relief and respiratory support. We understand the fine balance, as Eithene has respiratory failure (needs ventilation every night) but also needs a continuous drip of narcotics to remain comfortable. If Lucy deteriorates, would it be possible to try non-invasive ventilation like BiPAP? I don't know if she would tolerate it, but it might delay the need for intubation. Eithene uses BiPAP as a ventilator (it breaths for her) every night, and though not as effective and internal ventilation, it may keep Lucy off a vent.

Praying for healing of the MAS, and hoping you had moments to celebrate Easter in your hearts. Hugs.