We're HOME!!!

I can't believe we finally get to post this- WE ARE HOME!!!! After a bit of a hectic exit from the hospital, we made the trip home somewhat uneventfully. I had grown so accustomed to our setup in NC that it felt like a major change to leave. There are so many people who we are incredibly grateful for, and so many of them missed our goodbyes. Most of the PICU nurses (who were truly instrumental in Emma Kate's survival) did come by her room on the floor at least once to see her awake and active (well, several of them saw her passed out asleep... but the ones who saw her awake were just in amazement and overjoyed to see her), but many of the doctors who oversaw her care those terrifying several weeks didn't get quite the thanks I would have liked to have given; of course we thanked everyone profusely when their shifts were over, including the doctors... but I really wanted to thank everyone again and give big bear hugs to them when we finally reached the end of our stay there and Emma Kate was doing so well. I did get a chance to give big hugs to her CT surgeon Dr. Ungerlider, and his fellow, Dr. Otaki (who is Japanese and more than a little caught off guard by my hug...). I know we'll likely be back frequently over the next several months, or maybe years, I have no clue, and I hope we will get a chance to thank everyone again and let them see Emma Kate at her best when she is strong and breathing easier and quieter down the road.

We had really moved in down there and packing up was quite an ordeal- thankfully we had our car as well as Nana's car, and both were packed to the gills with everything we had acquired while we were down there, including a pretty darn impressive pharmacy. Emma Kate was asleep when we left, and we strapped her right in her car seat- thankfully Gretta decided this was one of very few times she would just go right to sleep in the car, despite being somewhat overdue for nursing. After a little while on the road, it was time to give some meds to Emma Kate- we actually had her feed pump running in the car and had planned ahead what drugs we needed to be prepared to give to keep her on schedule. She was supposed to get her Methadone, and sure enough, she must have known, because as soon as I hooked it up to the port on her feeding tube (I seriously had given 0.1ml of the 10 she was due) she started retching. Luckily she only vomited a tiny little bit, but I felt so bad for her. We dosed her with Phenegran and nervously gave the Methadone with no further incident. Other than that, (and one stop along the way to nurse Gretta) the trip home was uneventful, thank goodness.

We arrived home and set Emma Kate up on our bed so she would have plenty of room to stretch out and roll around- she had previously been sleeping in her crib, but there is no way we could possibly get her in and out asleep, or medicate her, with the mattress down at a safe level. Besides having her take up pretty much the whole bed, it's a decent arrangement. We're keeping someone with her at all times to make sure she is safe and that she doesn't pull her TP tube out or get tangled in her feeding line. We're still dealing with random vomiting issues mostly when she is asleep, and it really seems unrelated to meds. She once vomited 15 minutes after her Phenegran (the anti-nausea drug) and today she just vomited after an hour and a half had passed since her last med. I just hate it for her, what an awful feeling. And lord knows we can't have her aspirating any of that nastiness...

It's quite terrifying to have her here at home to manage ourselves... She's on so much medication, there's hardly a time that we're not pushing something through that tube. She breathes so loudly you can hear her downstairs, although she is moving air very well in her lungs. She continues to improve her strength and balance- now she is able to walk on her own sometimes and just needs someone hovering over her in case she stumbles or loses her balance. She's so glad to be home, with her kitties, Dixie, and all her familiar toys, but I think the best thing is that it is QUIET here, and there aren't a bunch of strangers constantly barging in wanting to do things to her any more. She's not yet back to her normal self- I'm sure it will be weeks of weaning these drugs before we have our girl back for real, but there are a lot of things coming back for her. The biggest unusual thing is that she really does act like a 2 year old now at times, and that combined with a lack of coordination makes for an interesting day. I love that she still likes to give the kitties kisses, and she is loving helping with Gretta. She even helped "wash" dishes in the sink and did a little food prep with Daddy too.

Emma Kate got a good thorough bath this morning and poor baby Gretta is overdue for one herself. It was nice to wash some of that hospital smell off of her and get her into some comfy clothes instead of always wearing her PJs, although there's certainly nothing wrong with that! :D We're working on getting a little food and (thickened) drink into Emma Kate, which has turned out to be quite challenging. She's had a little breakfast but isn't terribly interested in much more still. Although it still bothers me that she sleeps as much as she does (usually from about 2pm until 5 or 6am), I can't complain too much because it gives the rest of us a much needed break- it is HARD to keep up with this little girl! It's truly exhausting! Hopefully as the drugs continue to taper down, she'll not only be more like her usual self, but she will also be awake more during the afternoon.

We came home to some really cold weather, and snow still on the ground. You can always tell it's been windy because the snow gets blown away from the house in some areas and piled up in others. We have been generously given a lot of progress on the addition while we have been gone- it only needs a few more steps before we'll be ready to open it up to the existing house. And we just found out today that the church up the road has several members who want to help us out- they will be bringing hot meals for dinner for us through this next week, which is a huge help!! Not having to worry about taking time to plan or cook meals is huge!