Oye what a hectic few weeks. :o)

I thought I was going to loose my mind for a little while there...

Andy left on the 12th (Wednesday). The next day (Thursday) my day nurse called out and Mackenzie got sick. Friday we took her to the pediatrician. Saturday & Sunday no day nurse. Monday pediatrician again. Tuesday day of errands that took for-e-ver to complete. Wednesday UNC. Thursday rest. Friday UNC. Saturday rest. Sunday & Monday no day nurse. Well... Andy was supposed to get back from CA this Friday but he's going to be stuck out there until the 21st of August. Loverlee, right? I've already said goodbye to my insanity. ;o)

August has gotten pretty packed with appointments too. The 12th is her cardiologist, 13th optomologist, 18th GI in Raleigh, 19th pre-op at UNC, and 24th bronch at UNC. I'm going to try to cherish the next 2 weeks without appointments. ;o)

SO! Wondering how our trips to UNC faired? Quite well, actually! The swallow study revealed that Mackenzie isn't aspirating while eating, but we know that she's aspirating while refluxing. And the study showed she was refluxing on the drop of a dime. So the theory was made that Mackenzie didn't want to eat by mouth because she was in too much pain throughout the day. We've since (with the guidance of 2 nutritionists at UNC) upped Mackenzie's calories to 24 per ounce, and decreased her volume. The pulmonologist also increased her prevacid from 15mg at night to adding 7.5mg in the morning. So far it has made a HUGE difference with her oral eating. She's not only slirping happily on her sippies (still not quite the entire feed but has taken as much as 55cc when the total feeding is 80cc). She's also progressing with baby food! I initiated it again a few days ago because she was tolerating her dry spoon so well. :o) It definitely has to be on her terms, and she prefers to grab the spoon and push it in her mouth but hey I'm not complaining. ;o) The most she's taken is about two baby spoonfuls, but that's TERRIFIC!

As for her apnea episodes, her pulmonologist doesn't feel it's a true central apnea and moreso a secondary to something... it's just a matter of figuring out what that "something" is. Could be reflux, could be a problem with her lungs, etc. After the nutrition change, I thought for SURE it was reflux induced because she had managed to go an entire week without an episode. Last night she decided to have 2. :o( But we shall keep an eye on things and hopefully her bronch can shed some light on the issue. As for now we're still in "wait and see" mode.

Mackenzie has officially began using her upper airway. We tried a Passy Muir Valve (speaking valve for those with trachs). Her pressures were a bit too high for the moment, but we'll have it remeasured next month and try again. In the meantime, she's getting rather vocal on her own with grunts and whines (and cries!). I had to turn off the Low Minute Volume alarm on her vent (no worries an RT with our DME said it was fine as long as her low pressure alarm was still on) because she had decided to breathe out her nose while sleeping. It was sounding off the vent every few seconds and after a full night of it I couldn't take it anymore. Every night we turn it back on to see if she's stopped, but sure enough she likes to breathe out her nose now. 'Tis a GREAT sign that the hemangioma is shrinking.

She's also sitting unassisted fairly well! I think today she went about 20 minutes before getting tired. A little wobbly, but doing well! She's an absolute ham about it, though. ;o)

Alright... I'll have to write another update later. The Miss is beckoning for me to come play... and what Mommy can resist?!