'Tis the Season

Long time no blog! I suppose it IS the season ... although we have had plenty of snow days this year already. I think I should have taken advantage of them and gotten a blog written, but I probably did some crazy winter-y craft with Jamie instead (or cleaned up after eight snow-ridden doggie paws and two kids -- just as likely!).

In any event, we haven't had too much to report. On the heart side, we have met with Annie's cardiologist here in NH. He was pleased with Annie's progress and patiently listened to me question/vent/explain about the upcoming procedures scheduled for Annie on the swallow side of things. (Thanks, Dr. J -- you said exactly what I needed to hear: "I think those are legitimate questions to ask.") The really big news at this appointment involved Annie's meds. I must have said something about the Captopril (but I don't remember what exactly). Dr. Johnson responded with a "why don't we switch her to Enalapril?" He went on to say that it would be just a 1/4 tablet twice a day. I couldn't believe it! That would be LIFE CHANGING for us. Then, after he checked his references, he came back in the exam room to say that it actually would be just 1/4 tablet once a day. Wow.

Let me backtrack here and say that meds rule our lives in every way. I have a friend who has a child who requires medications like Annie's (if not more) everyday. I am the first one to tell you that I had no idea what that meant for her family before we began our journey with Annie. As an outsider, you think -- or at least I did -- that it's just medication. You don't think about what that really means to a family. Now I know (and I have commiserated with my friend Teresa, who I am so grateful to have for chats like this! Thank you!). Meds for kids are a big deal, and I have to say -- with all humility -- that unless you have traveled this path you can not understand what it means. Who is going to get up for the first doses of the day? Who will stay up late for the last dose of the day? (My friend Teresa even has a 1am dose each and every night!) Will we be out running errands so long that we should pack her meds? (And don't even get me started on the planning for an extended trip!)

So, back to Captopril. Captopril has been one of the biggies for us in that it is three doses per day, meaning every 8 hours. That means an early morning dose, a late afternoon dose (the hardest to remember -- I just got the hang of having my Blackberry nearby so I can utilize the alarm for this dose), and a late night dose. In addition, Annie's Captopril is custom compounded for us and must be refrigerated. If I am going to be out around 3pm any given day, I have to load up a syringe and put it on ice to take with us. I don't tell you guys any of this for sympathy or anything -- it's more that I am shocked at how little I realized medications with children impact a family before I experienced it first-hand. It's all part of the routine for us now ... it's just a routine that takes planning, forethought, and effort ... all of which I never thought about before Annie.

So ... the Enalapril would be 1/4 tablet ((in applesauce or Annie's milk) once per day, would not need to be refrigerated, and would eliminate our late afternoon dose AND our late night dose. LIFE CHANGING, as in a whole new world!! I could have kissed Dr. Johnson!! We are waiting to hear from Dr. Smoot and make sure everyone is on the same page ... and we'll have to make sure that Annie is able to handle the once-per-day dose of this med without her blood pressure responding negatively ... but here's hoping! This switch would leave us with 7am meds and 7pm meds and that's it! Hooray!!! I don't want to get my hopes up too much in case Dr. Smoot says she'd rather wait until Annie is a bit older, but I would be happy just to know that this change is possible at some point. (This is the med -- an ACE inhibitor -- that Dr. Smoot said "we may well send Annie to middle school" still taking. I take it that it is one of the last meds to be withdrawn once a cardiomyopathy kid is considered to be resolved, so even more reason to be happy with one dose per day.)

This post is getting too long entirely ... I should post more often! I'll make the news about the bronchoscopy and the other stuff a separate post in order to give everyone a breather. :-) I have to add some pics, though, to make it interesting. (Annie waiting for Dr. Johnson, Annie on the Polar Express, and Jamie with the first snowman of the year.) Annie is franken-walking (as we call it) EVERYWHERE! If it is a cabinet or drawer under the two-foot mark, it is emptied daily by Annie. She is signing up a storm ("more," "water," "Mama," "Daddy," and "milk" so far) and attempting to say a few words. And the rest I'll save for another post ....