Addie Update: Courage, please!

This baby girl has the deepest pools for eyes.  When she's focused, you feel like you are looking into the eyes of an adult instead of a baby.  It feels like she's always trying to tell me something important.  I wish I could unlock the language of EYE and interpret her messages.  I always think she's saying, "It's okay. Don't cry. This is how it is meant to be." or "It isn't your fault, Mama.  I signed up for this." Sometimes when she seizes, her eyes stay centered and focused while her little body shakes uncontrollably.  In those too frequent moments, I sometimes read confusion, frustration, or exhaustion; and always, I read courage.

I'm in need of courage right now.  We finally got Addie to a stable spot in her oxygen after three months of fighting inflamed lungs, so we're starting to wean seizure meds again.

Guess what was causing the inflammation?  The chest-percussion therapy (CPT)! All this time, we thought the smoky or polluted air from this summer's forest fires made her oxygen setting increase from less than 1 liter up to 4.5 liters.  For weeks, we fought to keep her oxygen saturation above 89% . . . we felt good if we got to 89%, but we were supposed to keep her between 93-97%. Additionally, the stress of trying to stay oxygenated, the energy requirements of seizures, and turning off feed four hours/day to do CPT took a toll on her weight gain. Addie has yet to hit 14 pounds.

We met with three of her doctors at the end of August.

THEIR PLAN

• Increase her feed rate.
• Add more formula to her mother's milk to boost calories/weight.
• Keep doing the CPT with added puffs from her steroid inhaler.
• Meet with a Gastroenterologist to do a swallow study to determine if Addie is regurgitating fluid into her lungs, causing inflammation, and increasing her oxygen needs.
• Meet with an Orthotist to create braces for Addie's contractures (Addie's biceps and back muscles were in a perpetual state of flexion, causing her body to contort--her brain couldn't send the message to relax the muscles).
• Treat her double ear infection (asymptomatic: no fever, no runny nose, no virus at home???)
• Come back and see us in 3 months.  

OUR REALITY

• The increased feed rate caused increased seizures, upper airway congestion, and stomach agitation so we lowered the rate
• Adding more formula to the mother's milk caused vomiting and increased risk of lung aspiration, so we took the formula out completely and the regurgitation stopped completely.
• We're working on boosting her weight gain through homemade baby food and extra cream added to her mother's milk.
• When we started CPT 3 months ago, Addie's oxygen need increased, so we stopped CPT and within 2 weeks, she dropped her oxygen needs down to less than 1 liter (in smokey, polluted air, no less).She coughed up bloody, pink mucous the day we came home from her appointments. Again, stopping the CPT cleared up the lung inflammation--goodbye pink mucous!
• And the double ear infection? We cleared it up with home remedies and read the package insert of her steroid inhaler: MAY CAUSE EAR INFECTIONS AND RESPIRATORY CONGESTION. Needless to say, we weaned off that as well. 
• Once the above cleared up, Addie's body relaxed and the contractures did too.

I have yet to schedule any of Addie's appointments. . . .

So back to courage? Once Addie stabilized on oxygen, we could start weaning her last seizure med: dreaded phenobarbitol.  We've been at it for two weeks and it is ROUGH!  They say (and use your condescending voice here), "Babies are not addicted to it, they are only dependent."  Semantics!  This baby can't crawl over to the pill bottle and thrust pills down her throat to get the withdrawal symptoms to stop!  But . . . if she could, would that then be classified as addicted? We are taking the wean so slowly but still must watch Addie stress--which increases her seizures.  And she suffers and sweats and cries out and vomits and twitches night and day . . . all because of a drug.  GRRR!

We had to take a break from weaning this week.  I couldn't handle putting her through it again . . . I couldn't handle it for myself.  I feel myself thinking, "Just give her the drug . . . make it stop!"  The reality, Chris keeps reminding me, is that the drug does not make it stop.  We must push forward to find her baseline and work from there.  If we could wean consecutively, it would only take us 6 more weeks. ONLY!  As it is, we will probably have to take many breaks just to keep her stable enough to continue.  Last week, she seized herself away night and day until Saturday night when her over-taxed exhausted body finally slept deeper than the seizures could reach.

So--I need courage to continue this course of complete and utter about-face from the well-intended but very exasperating medical advice of PRACTICE-ioners.

Thank you for your prayers. . . you'll never know how much they help!