Addie Update: Trick or Treat?

Hi family & friends--

Well Halloween week overflowed with both tricks and treats for little Adelaide & us:

Tricks

Seizures continued to plague our little babe and worsened over the weekend until Monday when the neurologist asked, “When did we add Keppra?” “Saturday.” I asked, “Can seizure meds worsen seizures?” “They can, ” she answered. She pulled it and chose Carbamazepine instead. Since then, Addie is not having visible seizures, though she is having some sub-clinical ones . . . they’ll be increasing her dosage of what I like to call “carbonation med.”

1st attempt at getting an MRI: FAIL! After six hours of no food, radiology called to postpone Addie’s MRI to 3 hours later in the day. So 9 hours without food? That wasn’t a go! By the time they rolled Addie down to radiology, hunger pains OVERWHELMED her. The nurse practitioners drugged her just to the point where she’d have to be intubated--without ability to calm her. So she returned to her room with no MRI and fell deeply into sleep from the drugs. Good thing too since her food wasn’t ordered and didn’t come up until an hour later. Grr!

2nd attempt at MRI: SHUDDER! As nurses rolled calm and sleeping Addie in her bed down to MRI, the IV pole wheels got caught in the elevator shaft transition. The bed kept moving forward but the pole stuck fast. Thus, Addie did a head-over-heel flip as the tubing in her PICC line jerked her little body out of her special mattress and planted her face down and pressed against the corner panels of her bed. Our little babe was no longer asleep nor calm. Neither was her mother! Nor the staff! Terribly traumatic for everyone. In addition, her oxygen tanks kept malfunctioning and terrific & terrible shrill sirens sounded over and over and over again. Addie received drugs to sedate her, but all the rest of us adults just had to breathe deep (or let the tears roll down . . . in my case). She did settle down comfortably for the MRI and it worked out.

Well--there were more tricks, but after writing that last paragraph, my heart is racing. Needless to say, the NICU managers have met with us to both apologize and to listen to our concerns regarding the many TRICKS of this week. They are very gracious to us and will be making changes to ensure such things don’t happen to other little children.

Treats

• Addie’s 5th chest tube out! 
• Addie gets the EEG & AEG wires off her head (measures seizures). 
• Daddy gets to hold Addie for the first time! 
• Mommy and Addie get more snuggle time this week, too. 
• Addie gets to actually wear clothes for the first time! 
• Addie is getting her own Mommy’s unpasteurized milk! Most of it is still spun to remove the fat; but Thursday, they started introducing full-fat milk slowly into her feed. 
• The Geneticist agrees with Mom that there’s nothing screaming “genetic anomaly” so additional genetic testing is put on hold for now. 
• The MRI comes back with “‘normal brain development--no issues.” The Neurologist confirms that Addie’s “abnormal baseline brain activity” was more likely due to medication. Seizures may be at the neuron (nerve level)--they are not a mis-function of the brain. Addie will not be “severely developmentally delayed,” as we were told last month. 

When can she come home?

• Still dealing with “chronic lung disease.” Her lungs need to heal from swelling. 
• Needs to tolerate fat in her food by showing no reacumulation of fluid in her pleural space (sac around the lungs). 
• Needs to wean off her high-level respiratory support. 
• Needs to be screened for her audiology test--her respiration support makes it impossible to get a good reading. 

Please keep our sweet little girl in your prayers/fasting. We will be praying for her lungs to heal so that she may wean from her respiratory support & that she’ll be able to tolerate full-fat feedings.


We send our love and gratitude to you for your love and service to our family--

Chris & Desi