He Will Carry Her..

I think where I left off last time we were heading to TCH for what was supposed to be a quickie x-ray and check in with the cardiologist. I have complete respect for the staff at TCH but lately it's like the black cloud descends over our heads when we step in that place. Our appointment was at 1:30pm and they promised we would be in and out, given Quinn's delicate condition post-op and post-hospital release. Not so much. We apparently were forgotten and then they continually paged our regular cardiologist for an hour plus, wondering why he wasn't showing up. If they had just asked me, I could have told them he was in a conference in BOSTON. Nice. Anyway, we finally got our xray and met with a couple of cardiologists and then headed back home in rush hour traffic at around 5:30pm - not exactly super sonic speed.

The good news is that Q's xray was a little bit better than it was on Wednesday from our hospital release. Her lungs were approximately 90% clear - still a bit of the effusion left over but to be expected, I guess??? We will remain on Lasix now for 3 times a day until we go back to our regular cardiologist next Monday and then we'll see.

The other part of good news is that Quinn handled the appointment like a champ. After taking a nap on my chest for about an hour and a half while waiting for said doctors, she woke up in the happiest mood and just wanted to play... something she hadn't wanted to do for a long while. We spent at least an hour pulling things in and out of my wallet (good lord, I hope I retrieved all of my credit cards back) and smiling and kissing and hugging. All of the sweet things I have missed desperately for 3 weeks. Once we got home, she was free with her kisses, ate a great dinner, barely fussed during bathtime and settled into yogurt with Gigi and Steve. Matt and I even felt comfortable enough to go have an evening out of Mexican food and dart-throwing (oh yes, we are CRAZY kids these days) and talk about things non-heart, non-diet related. I went to bed Friday night with peace in my heart that we just experienced "the turn-around"

Saturday morning, not so much. Appetite not back, fussy, fussy, fussy. And pretty much the same continued for Sunday. We took them on multiple spins around the blocks in their "cars" which pacified her for at least a little while. My mind is just racing - I don't know what is wrong. We are giving her the medicines, she is doing baby things (peeing, pooping regularly, breathing well, drinking milk) but refusing most food, even her favorites. It's the saddest thing. She moans a lot but we don't know how much of that can be attributed to her personality and perhaps frustration in not being able to move as easily as she did before or if she is in pain --- and if she is in pain, where is it coming from??? 

Never felt so helpless. I just want my little girl back. I spoke to 2 cardiologists today and they are just waiting to see what our pediatrician says tomorrow before they make any assumptions. We have an appointment tomorrow morning and I am hoping they can take a chest xray and ensure that the pleural effusion has not re-emerged. And then we'll go from there. My biggest fear is that there is something beyond the effusion causing her pain. I just don't know. At this point, I can keep her somewhat happy during the day and in fact, we had a good morning.

The bottom line is that we have to keep her moving - the laying around is not good for her effusion and her partially collapsed portion of her left lung --- it needs energy to be exerted to pop back out. So I plopped her in the middle of a bunch of toys this morning and tried a more hands-off approach as opposed to coddling the entire morning (which I am glad to do, but at this point, she needs movement). She did pretty well this morning but this afternoon was rough. Thankfully, Ryan is being a super champ and is just toddling around and talking to himself like crazy. For the most part, he seems over his super-clingy state that he was in when we were back & forth to the hospital so that's good.

And to add a little craziness, I am sort of back to work. It's time. So I am trying my best to get in some coherent work during their naptimes and catch up on all I've missed the past few weeks. Grateful to have an escape to think about something larger than myself for now.

So I guess what they are saying now is that we are on the "slow trajectory" of recovery. You never know how kids are going to recover. Toddlers are especially difficult. They are ingrained in their routine and no matter what people say, their memory is decently strong, so they recall the smell of the hospital, the look of the doctors, etc. Now, they may not remember it 20 years down the road (and thank God for that) but for now, it's a lot for a little person to take in. I guess I got my hopes up because everyone said how quickly babies recover - and I sort of though Q fit that mold being so fiesty and all. But this is her path and we will continue to walk it with her and carry her whenever necessary.

Will continue to keep you posted. Love you all.