Well, we are home again after our latest trip to Cincinnati. About a month or so ago, we noticed that Emma Kate was starting to have more breathing effort than she'd had through the summer, and her doctor decided to get her seen now instead of waiting until December as we had initially planned for her checkup. The trip up was great, the girls did AWESOME in the car- we were able to break up the trip into 1 1/2-2 hour stretches and it was a gorgeous day, so we spent our breaks at parks and church playgrounds that we found along the way. We even got far enough on our first day that we had extra time to go to the zoo on Monday for a short while, before her appointment with the pulmonologist. Everything went fine there, mostly just a preliminary visit with him before he would see her in the OR on Tuesday. We were pretty bummed though, because before we left the zoo for the appointment, she was having such a fun time riding the train that we bought tickets for unlimited rides on the train/tram/carousel. We were promising her all along and during her appointment that she could ride the train as many times as she wanted when we went back to the zoo... well, by the time the appointment was over and we got back to the zoo, it was after 3pm, which means (unbeknownst to us) that the rides were all shut down. Um... wow, that was a real bummer. She was really sad about it, but she perked right back up when we found a place to get an ice cream cone! :)
Tuesday morning we spent the customary 2 hour wait in the preliminary exam room with all the various people coming to check her out before anesthesia and all, and she went in finally around 9:30am. We were fully expecting them to come out and tell us what they found and what they had done to fix it and turn her right around, but that's not at all what happened... They went in and looked and that's about it. The pulmonologist said her lungs (including the upper right lobe) were so pristine that he didn't even feel compelled to do the BAL (a flush of her airways to get cell samples to look at and culture), which is a little funny because he was totally saying just the day before that it was a very low risk procedure and "if you're in there, why not" sort of thing... she must have looked REALLY good to change his outlook! Naturally, the source of her breathing effort is that G*DAM*ED pericardial patch put on in the first surgery. It's still flexible and collapsing into the airway, being pushed by the pulmonary artery which lies right on top of it. They could see it pulsating from inside her airway. It is causing the airway to narrow considerably. Because of the proximity to the major artery, they decided it wasn't worth the risk of dilating the airway or cauterizing the patch to scar and stiffen it. We have 4 "plans" available- 1. Do nothing (Dr. Rutter told us we have probably got a better than 90% chance she will improve on her own with more time) 2. Insert a temporary stent in her airway (which we have been told all along, even back to the doctors at Wake Forest, is fraught with complications) 3. Very very VERY carefully cauterize the patch (they are either going to be too aggressive and risk damage to the pulmonary artery or too cautious and essentially get no effect) 4. Open her up and do another slide tracheoplasty on her again (which is scary by itself, not to mention that in their words "she is not a fun girl to operate on"). So, naturally, we are doing the wait and see approach. She's going to be on inhaled steroids through the winter (too bad we turned in the 2 huge boxes of Pulmicort we had from last winter already) in an effort to keep swelling and fluid to a minimum in case she picks up any illnesses, since even just a small amount of swelling or fluid would have a huge impact on her ability to breathe, and we have been told to be very careful not to expose her to illnesses through the winter. Dr. Rutter expects us to make a few trips to the ER this winter when she does get sick, to get treatments to reduce inflammation in her airway more aggressively. The doctors tried to explain to us that with a lot of these surgeries, there is a period down the road where things get worse, and then after some time they start to get better again- supposedly we're at the "getting worse" point. It's pretty upsetting after having such a great response to the revision surgery and an excellent summer pretty much symptom-free, to be back to such a noticeable effort again. She has shown us all along that she doesn't like to follow the "typical" path, and maybe this is the same again.
So anyway, after she recovered, they gave her a room in the complex airway unit, and after a couple hours of getting fluids, they took her off- she was already eating and drinking well- she bounced back after the scoping just like she has for all the others. After a while we were released to go to the playroom, and got to spend a few hours out and about between lunch and dinner. Night was a little rough, Gretta and I stayed in the room to help get Emma Kate through the night, and it took Emma Kate a loooong time to go to sleep. She was very restless and when she woke up around 3am, she was AWAKE. We watched TV quietly for a little while, and somewhere around 4:45 or so, Gretta woke up. Emma Kate stayed awake a bit longer with Daddy before she finally cuddled up with Gretta and me and went back to sleep. Fortunately things went pretty quickly Wednesday morning, and we had her IV out and discharge papers signed a little after 9am or so. After showering and packing up at the hotel, we hit the road to come home, hoping to make it all in one day, however, the weather was not so kind- it was dreary and rainy and windy, which makes it hard to find places to let a 3 year old and nearly 1 year old romp and play... It was hardest on Gretta, not really getting a good activity break, and around dinner time we caved in and found a hotel for the night. It was a good thing, we all needed a decent (or at least more "typical") night's sleep, and we got it at the hotel. After grabbing a nice breakfast at the hotel, we finished the trip home, making it in time to stop for a few groceries and be home in time for lunch and naps.
Shortly after getting home, Gretta decided to show us that she had learned a lot from her time at the hospital, where we spent a lot of time holding hands and walking around, and she has been walking a few feet at a time, balancing well and everything! On one of her longest journeys, from the sofa to the spring horse, she lost it right at the end and did a face plant on the floor... now she has a big fat top lip... :( I'm just relieved she didn't cut her lip open or anything... Funny how all of a sudden she can't be more than an arms-length away! She seems to be doing great otherwise, and we're hoping to get lucky and have no one get sick after our hospital stay, where it is nearly impossible to deal with a cruising baby... she touched so many surfaces that made me cringe... but she surely wouldn't let us hold her the entire time either! She has become very opinionated lately, and if she doesn't get exactly what she wants, she will throw herself backwards and kick the floor, or if she's being held, she will go limp and straight, making it nearly impossible to hold on to her! It makes me wonder what we have in store for us as she becomes a toddler... :-/
All in all, we are happy to be home and are looking forward to some peace and quiet...
