4-18

This morning started with Penelope being weaned from her home oxygen.  She was doing so well that the doctor decided to see how she would do on less flow.  She did very well so they checked a blood gas to see if they could wean her some more.  That's when the doing well stopped.  Her CO2 was 92 which is about 32 points above high.  The craziest part is that she has been showing no other signs of distress.  No lethargic behavior, excellent vitals, eating well, normal Ph...etc.  Now this is not a new game for Penny. She loves having extremely high numbers for no apparent reason, but this time it meant that she would need to have something done to help her get rid of all of that carbon dioxide!  The doctor who was taking care of her today was new to her and her antics and immediately canceled her upper GI study and wanted to intubate her.  The nurses quickly (and mercifully) talked him out of it because of her history with the vent in the past (5 weeks of trying to get off of it).  Fortunately he listened and just put her on a CPAP (constant positive airway pressure) which is that lovely contraption that looks like a rhino with a hat on.  Her CO2 came down at the next blood gas but after having an echo done to check her heart she was so angry and worked up that at her next gas her CO2 was up.  By this time we were working with a doctor who has been around for some of her antics but even he was ready to intubate her!  I asked him to give her just a couple more hours to see if she could get the number down.  After such an upsetting time with the echo (not to mention having a mom holding her and crying) I didn't want her to have to be on the vent just because of that!  So, thankfully, he agreed.

They put Penny on something like a hybrid between the cpap and the vent.  The doctor called it a bi-pap (I think...brain is a little scrambled). It's basically the nasal prongs of the cpap with the breath support of the ventilator.  The nurse had never seen it done before, but if it keeps my baby off the vent I like it!   He also said that if her gas is better at midnight then she can stay on that and not be fully intubated.  Lets just pray that she can get this CO2 out and we can get on with the "get my baby home" plan.  I liked that plan.

Not to leave Lydia out....she weighed 10 lbs 4 ozs today. I know. Crazy.  She also will be going in for a physical therapy and speech therapy follow up.  She'll be getting a modified barium swallow study like Penny had and most likely get her feeds thickened to help with her reflux and excessive spit up.  This will be good mostly because that formula is expensive and I hate to see it wasted!  Just kidding...hopefully it will make her more comfortable.

OK, I think that's it for now.  I'll post again if we end up taking a turn for the worse after the midnight gases.  This may be the only time I can use the term "midnight gases" in a socially acceptable way.  Alright, now to try to sleep.