After a super-fun weekend of celebrations (Sister Charlotte’s 7th and her Grammy’s 70th) the tides changed.
Late Sunday the blister on her Baclofen pump ruptured. This was what we feared all along. Since it’s now an open wound and is infected, the doctors said it must come out. She was admitted to Miller Children’s Hospital in Long Beach yesterday and has been on IV antibiotics. She is scheduled for surgery at 8:00 AM Wednesday.
After surgery she will be moved to the PICU so her heart can be closely monitored. Now that she will not be receiving the constant dose of Baclofen she may have adverse side effects. And the concern is that any negative stimuli can initiate the flow of the catecholamine (in the human body, the most abundant catecholamines are epinephrine (adrenaline), norepinephrine (noradrenaline) and dopamine, all of which are produced from phenylalanine and tyrosine. Release of the hormones epinephrine and norepinephrine from the adrenal medulla of the adrenal glands is part of the fight-or-flight response) in her heart which can trigger her arrhythmia & tachycardia. So she will be given heavy doses of oral Baclofen that will gradually be backed off to her appropriate level. This will take several days…ugh.
We hope and pray that Lily’s spasticity has greatly improved since receiving her pump; if so then this will be a true blessing (we’ve wanted to ultimately remove the pump). But if she still requires heavy doses of oral Baclofen it could greatly affect her cognitively like before (she would sleep 2-3 hours after each dose). We will remain positive and hope for the best.
We appreciate your extra prayers for Lily and our family.
Extra prayers tonight for all of you.
I’m really sorry you have to go thru all this again, but I’m positive something good will come from this.
Everybody at home and I wish you all the best. We hope the surgery went really well and you are going to recovery really fast and well.
Emma send you a very special kiss.
Lots of love,
I start my day today with a prayer for Lily, and you all. So glad the surgery was smooth. Stay strong Lily!
We love you.
Liz, Pete and Beau.
So thankful she is out of the hospital. Every day is a gift and I pray that you all can find moments to smile. Praying. God’s Peace, –Kelly