Friday evening

Yesterday we finally got to go out and have some family fun! Uncle Chris was in town to hep us for a week, and he came with us to check out the aquarium that is just up the road from the hospital- it was really nice! Surprisingly big for being so far from the beach, and excellent exhibits. Lots of underwater tunnels and petting areas. Emma Kate was excited to get out and be a normal kid again, although we did have to hook up her toooobs about halfway through... she did great and only started to tire towards the end of the visit, which pushed her nap really late anyway. Other than Mommy taking a detour on the way home (this area is what I like to refer to as a vortex... I never get back to the house the same way twice...) it was a great afternoon out! The first in a very long time, and hopefully the first of many more fun days to come!

I loaded the pictures in backwards order, so there are some hospital pictures at the end, but don't let it confuse you- we are out of the hospital finally!

Today was our scoping appointment- we were supposed to take her in on Wednesday, but after the night of vomiting for Mommy and Emma Kate, they elected to postpone it until today. After an excruciating 2 hour wait with lots of people coming to talk, ask questions, and examine Emma Kate, she finally got in and was done in about 15 minutes. Dr. Rutter was pleased with what he saw, there was only a small "mushroom" shaped piece of granulation tissue that he easily removed, and he doesn't even see the need to put her on any nebulizer treatments at this point. He felt like she was doing really well, especially considering that she was a "redo" surgery. Our next scope will be on Feb 9 and if everything looks good there, we will likely wait 6 weeks until the next one. We have an appointment with Child Life tomorrow to try to help address the insecurities she has developed from all this, then there is a GI consult on Monday to talk about how we are handling her feeding issues and TPN/lipids, tuesday we go for a consult with the sleep center to address her sleep difficulties and possible nightmares she has been having since this started, and finally, there's the scoping on the 9th. Hopefully outside of these appointments we won't have to put her through a lot of stress over at the hospital. I guess we will probably be in and out for speech to assess her feeding as well.

We had a great week with Uncle Chris helping out- Emma Kate warmed up to him quickly, and he was great with Gretta too! We have Valerie and Kira coming tonight to help for a few days, and expect Greg to be headed home for a few days early next week when Mimi and PopPop come to help take care of the girls while Daddy is gone. I can't believe how fast January has gone by, hopefully before we know it, we'll be back home with a healthy and good-eating little girl!!!

Wednesday evening

Wow, so it's been a few days since I posted... We mostly hung out over the weekend, just working on eating and drinking and feeling like there is such little progress, but it's just day to day. Hopefully week to week (or shoot, even month to month) there will be more notable progress. We were planning on getting discharged Monday to RMH, but there was some sort of miscommunication or something, and the ball got dropped along the way. So, after one more night at the hospital, Emma Kate was finally discharged Tuesday around lunchtime! We've been thoroughly instructed on how to set up and run her TPN, and shortly after we hooked her up on Tuesday, I started feeling yucky. A couple hours later, I was on the floor of the bathroom... Not fun. The really bad news is that a couple hours after I started, Emma Kate started waking up crying and would throw up shortly after. She and I must have picked up the same virus or something. We were both pretty miserable through the night, and poor Daddy and Uncle Chris had to take care of us. Needless to say, no one got much sleep... except Gretta I think! Emma Kate woke up around 6 and was ready to go to the playroom, I on the other hand felt like I'd been hit by a truck. It's taken me most of the day to get some energy back, and neither one of us has eaten much yet. We're just hoping and praying that no one else gets this, and that it's going to be a quiet, easy night for all! This will officially be Emma Kate's first night in a quiet, dark room, uninterrupted by people coming and going, monitors going off for no reason, and people messing with her while she is trying to sleep... and hopefully no throwing up!

Emma Kate got a dressing change on her PICC line this afternoon and she sat so nice and still for it, even though she was very upset and crying about the tape being pulled off. It just seems so painful! She's such a good girl. Gretta has been getting all kinds of attention from people as we walk around the house, she smiles a lot and just seems so interested in everything! She is holding her head up independently and is so strong with her tummy time! Hope to be posting some pictures soon!

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.

Wednesday evening

Today was relatively quiet in the way of hospital-happenings... the only thing we were somewhat inconvenienced for was another nuclear scan to determine blood perfusion of Emma Kate's lungs post-operatively. Luckily it's an easy, fast test, and she tolerates it just fine. We have finally gotten her moved from an evening window to morning for her time off of the TPN (and without tooooobes and wires), which was really nice. The window has moved to 7am-1pm, so not only did it get moved to a better time to be off that stuff, but it's also been extended by 2 hours. I guess the window will get progressively longer and longer as she is able to take in more and more calories on her own. She seems more willing and interested when it comes to meals, but we're still far from meeting her needs, especially since she is needing extra energy for healing and repair. She's actually taking several bites of food on her own before we resort to little games to get her to eat more. She did well for breakfast and lunch (the speech pathologist joined us for lunch to observe, and she was pretty happy with how Emma Kate did), but when we switched to "soft mechanical" foods from dinner, instead of the purees she has been on until now, she did seem to have more trouble with it. I don't know if she's so weak in the muscles for chewing that she's not able to chew it enough, or if she's having trouble swallowing the larger mass of food. I think we're also relegated to sticking to the honey-thick liquids, since she seems to be coughing with the nectar-thick unless it's literally just enough to wet her tongue a bit. We're giving her tiny sips of thin liquids in the end of a straw, and she actually seems to tolerate those just fine, but it's likely because it's just such a minute amount, I'm sure. Anyhow, this is still our biggest hurdle to overcome, and we're so anxious for Emma Kate to be back on a normal diet! Besides, the toddler menu at the hospital is quite limiting, she pretty much has macaroni and cheese, spaghetti, and ravioli at every lunch and dinner, with an occaional attempt at peas or cottage cheese... It will be so wonderful when she can eat and drink normally and we can get her back to the home-cooked meals and variety she is used to!

Emma Kate spent most of the day outside of her room, either walking around or riding in her wagon. She's building up better stamina every day- today she walked from the cafeteria nearly all the way back to her room, which is quite impressive! She also got a visit from the music therapist, which was pretty fun, especially since the lady knew some of the songs from the Dora cartoon... :) Because of the way the day played out, she had a very short nap, only about 10 minutes long, including the trip down for the nuclear scan... so she was very tired and ready for bed tonight. It's so wonderful to curl up with her and have her go to sleep so smoothly!

Miss Gretta continues to attract much attention at the hospital, we get lots of comments on her! Today she was laying on Emma Kate's bed on her back, and I witnessed her roll over onto her tummy all by herself! The one arm was still sort of pinned underneath her body, but otherwise she was all the way over, and the bed was completely flat, so no cheating this time! It was pretty exciting! She's been quite chatty lately, and she wakes up in such a good mood in the mornings, with so many smiles, she's our jolly little elf!

Tuesday evening

Emma Kate got her 1 week MLB scope this morning, and although the pictures look extremely bizarre and just plain wrong to us, Dr. Rutter is actually quite pleased with the way things are looking. He did have to remove a small piece of granulation tissue, and there is quite a bit of a "figure 8" effect in there. The pig bronchus to her upper right lung lobe is pretty dramatically compressed, but he thinks that will improve over time, and we have to remember that the rest of her lungs are getting ventilated soooooo much better than they ever have before in her life, so it shouldn't be any huge concern. He plans to scope her again 1 week and 2 weeks from today, to monitor granulation and healing progress. If we weren't having to keep her on TPN and deal with feeding issues, we'd likely be discharged to RMH pretty soon- the progress from this surgery is absolutely stunning when you compare it to the timeline we dealt with the first go-round... it's just tragic to think of where we could be sitting if we had been here first... argh. Hindsight is a painful thing.

Emma Kate did quite a bit of walking around this afternoon, but she was a little slower than normal, having had the anesthesia from the scoping in the morning. She was just settling down for a nap when the transport guy came to get her to go down to the ultrasound department to get a renal exam done. She was a trooper throughout the procedure, and hopefully we'll get a report from that by the morning. They want to make sure her kidneys are normal and there's nothing going on there that could be the cause of the mild hypertension she's been dealing with for a few weeks.

We had a great dinner together in the cafeteria tonight, Emma Kate was actually very enthusiastic about the meal starting about 45 minutes before we had the food to sit down to, and she did great, eating much more than she has for us recently! She still has a ways to go before we can go without relying on the TPN to keep her healthy and healing well, but this was a wonderful step in the right direction!

(Great) Aunt Kathy's visit

Greg's Aunt Kathy came to help out with Gretta and Emma. Here she is spending some time with Gretta at the Ronald McDonald House.