Lucas Camilo

Our week started out with an early morning visit to the pediatrician for Lucas’s latest shot.  It was to be the fourth dose of Synagis, a drug that helps prevent RSV (a virus akin to the common cold in adults but that would be devastating for a baby like Lucas with lung issues.)  Lucas got his first Synagis shot at Children’s while he was in the NICU and we’ve struggled to get future shots because of insurance issues – each dose of the drug costs upwards of $2000 for a baby of Lucas’s weight.  This time we arrived at the pediatrician’s office only to hear that both our primary insurance and the secondary insurance had rejected coverage for the latest dose.  It wasn’t clear if even paying out of pocket was an option, since the distributors of the drug probably hadn’t shipped it without a go-ahead from insurance.  We stuck around the doctor’s office for a while anyway since Lucas was having a rough morning with spit-up episodes.  Finally, we heard from the nurse that they had an extra dose of Synagis left over from another baby that would otherwise be wasted, and that we could give it to Lucas instead of waiting for the insurance issue to get worked out.  Problem solved, at least until next month’s dose.

Getting a massage post-bath

Wednesday brought back-to-back therapist visits, first from the physical therapist and then from Lucas’s new speech and language therapist who for now is helping develop a stronger suck as well as the swallow reflex.  She also brought along a Passy-Muir valve for Lucas, an amazing little device invented by a man with muscular dystrophy who wanted to be able to express himself despite having a tracheostomy and being on a ventilator.  The one-way valve allows air through the trach tube when Lucas inhales but then closes off during exhalation so that the breath goes around the trach and out through the mouth and nose, passing by the vocal chords on the way.  Lucas did great with the valve test, sporting it for close to 30 minutes and along the way beginning to make little sounds that he couldn’t previously make (there are lots of additional benefits to the valve beyond the ability to make noise, including increased ability to smell, taste and feel sensations in the mouth.)  Lucas also got to practice sucking with a special, new bottle that will help him move towards oral feeding.

Finally, we haven’t talked about Haiti yet on the blog but we’ve been thinking a lot about the horrible aftermath of last week’s earthquake.  (If you’re on facebook, Burke’s posted lots of information and links passed along by friends involved in Haiti solidarity, including those of two organizations that we donated to, Partners in Health and Konpay.)  It’s hard to imagine the extent of destruction and suffering in Haiti right now, and beyond the pressure needed to help ensure more aid arrives and that Haiti’s debt is canceled by the IMF, etc., we’re mostly feeling deep sadness about the situation.  This morning Democracy Now included some amazing stories of survival that demonstrated the will and spirit of the Haitian people, which is what will get the country through this crisis.