3/16 - Moving Forward

On Wednesday and Thursday Leo's Pulmenologist was able to stop by which was good because the daily PICU docs were refusing to advance Leo's wean off the vent until he gave his input. The pulm said  move him to 7 hour cpap and then 9-10 hour and then 12-13 hour with 3-5 days between each move. Then Leo would move to oxygen only and then to room air with no Vent. Overall, the plan was still pretty vague and it seems like it will take forever to get Leo off these machines. The good news is Leo continues to do well and has handled each step like a champ! On Saturday night someone (no one knows who) turned his oxygen down to 25 from 28 and he did good for 12 hours. When I got here I saw it and told them the Pulmenologist said to keep it at 28. They found the pulm's note and put him back up. I kind of wished I kept my mouth shut.

Every 6 hours Leo gets a 20 minute "vest treatment". They strap him in this mini life vest and basically shake the shit (sometimes literally) out of the little guy.  The shaking loosens up secretions in Leo's lungs which can then be coughed/suctioned out. He will also get the shake n bake treatment at home. We recently received our machine and it cost $15 thousand!

We finalized a nursing agency choice and are now waiting on the state to approve our entrance into the IL Waiver program for MFTD (medically fragile technology dependent) children. Thanks to all the tax payers out there! The program is not income based and all kids with trachs/g-tubes qualify. All medical bills go through private insurance first but the waiver covers home nursing. Private insurance only covers a very limited amount of home nursing. In our opinion private insurance should cover home nursing. How could a family ever plan to financially survive a devastating illness if insurance does not cover needed skilled care? 

Sammie's kindermusik class sponsored an event at the bloomington flex professional basketball game on Saturday. Sammie's class got to do free inflatable bouncing houses and slides and face painting. Sammie loved it. Everyone commented that they couldn't believe a little one that small wasn't afraid of the big slide. Sammie is pretty fearless and scurried right up it. Afterwards, Dad came home and we enjoyed the weather.