Saturday evening

We went ahead and did a swallow study yesterday since Emma Kate has been having some increased trouble eating and drinking lately- she had the history of silent aspiration following her first surgery, and they wanted to see where we stand on safety drinking and eating purees. She did well on the purees and the honey-thickened liquids, even taking a bit of a chug from her cup and getting 3 consecutive swallows from it with no problem. She did aspirate on the nectar-thick liquid, but at least this time she did cough in response to it, so that will help protect her airway more. They don't really have any clear reason behind why she is suddenly not tolerating the thicker purees and soft food like noodles or bread as well as she was last week, but we hope she will come around quickly. We are trying to only offer her "safe" things to swallow so she can gain confidence with it and be more willing to eat and drink at meals. We're still only getting a couple hundred calories in her each day with a pretty good amount of effort on our parts, and even then, on occasion she will choke on something and end up throwing up everything she ate. Like tonight, we had a pretty successful dinner experience, and when we got up to her room, we started to give her a dose of ibuprofen before bedtime- she choked on the third little tiny squirt of it and ended up vomiting up all that hard work. So it's been very frustrating and I can't say there has been any serious progress yet, but I think we're going to have to look at the long term picture and expect things to get back to normal maybe in many months down the road. I was finally able to find a food mill to make some pureed meals from fresh fruit and veggies, so hopefully she will eat more of that instead of the 3 or 4 things we can order from her menu every day... it just seems like eventually she would get sick of it. Oh well, it is definitely a slow work in progress.

So, that's the somewhat frustrating end. The better news is that Emma Kate may be getting out of the hospital soon! She's been so stable with her airway that there's really no need for her to be there for that, so we're going to be sort of transferred to the GI service to continue dealing with the feeding issues, vomiting, and the TPN/lipids, all of which apparently can be dealt with on an outpatient basis. We met with a nurse today to give us some detailed instructions on how to deal with the PICC line for her IV nutrition, and we will get more practice tomorrow on how to hook it up and work the pumps. At that point we will be able to have her here at RMH (and not on monitors with a bazillion interruptions every night) and have a nurse come here to take care of bandage changes and such. We'll go in periodically for other needs, including her airway scoping, which keeps us as eligible residents at RMH thankfully. The room continues to get more and more crowded with the regular beds, a cot, a toddler bed, and a little fridge for the TPN to be kept in... luckily there are good places at the house where we can play and hang out outside the room! :) So, we're not sure how much longer we will be staying here, but it will at least be a couple more weeks I imagine. I don't think we will be leaving until we are getting enough calories in her every day that we can stop the TPN, and who knows how long that will take us at this pace... we are just so excited at the prospect of having everyone together again!

Speaking of the house, we did manage to get "passes" to take her out of the hospital Saturday and Sunday, just to have her come to RMH for a change of scenery and to hopefully get her in a better environment to foster regular eating. She was really excited to be here today and tomorrow will be even more fun, since we will have more time with everyone here (Daddy had to attend a seminar to allow us to enroll in some financial assistance programs this morning). Hopefully this will be a step in the right direction to get Emma Kate back to feeling like there is some routine in her life and to let her forget about all the constant poking and prodding she has dealt with for so long.