Monday evening

We had a nice weekend here with no doctors appointments! :) Valerie and Kira were in town to help out, and they got to go to the zoo with us! Unfortunately, a lot of the exhibits are closed due to the weather (we knew it would be that way, but figured it was worth a try), but we did get to see some giraffes, elephants, lions, and monkeys, in addition to the birds and reptiles that are normally inside anyway. They also have a very cool manatee exhibit with a mama and baby in it. We did have to be careful to keep Emma Kate's toooobs warm so we weren't running ice-cold fluids into her. It was a pretty decent weather day but still pretty chilly! It was great to have Valerie and Kira stay for a few days, and really appreciate the help!

Today was our GI consult appointment, and it was very time consuming. There are multiple people included to cover different aspects of care, and we spent a lot of time talking to each of them. Basically we established an understanding that TPN/lipids does indeed knock out appetite since it provides all necessary nutrients so the body does not feel the need to take anything more in. (We had been told SPECIFICALLY the opposite a few times, and it just didn't make sense to us...) So the next batch is going to be made up with 20% fewer calories in it and they are playing around with the glucose measurements to see if they can provide her a bigger window off the stuff. It's just very cumbersome and limiting to have to have one person specifically designated to carrying the pack and following Emma Kate around on what is essentially a 5 foot long leash. Dr. Putnam expects that recovery to fully eating and drinking capacity is likely to take several months (he was talking about maybe 6-12 months) and in the mean time he believes she is highly likely to need *some* sort of nutritional and fluid support. If she seems to be making leaps and bounds of improvement, then she might only need the TPN/lipids for short-term help, and we might be set with what we have. If she is to be on TPN/lipids longer-term, she will need a central catheter in place rather than her PICC line apparently. If there doesn't appear to be any intestinal issues and her gut is working fine (which it seems to be), and we're looking at long-term support, we might consider having a G-J tube surgically placed so that we can provide feedings through her digestive tract for support instead of IV (which over time takes a serious toll on the liver). Naturally, we just want her to get better and back to normal fast, so its hopefully not going to come to either one of these as a necessity! It just baffles me as to how they expected us to get her to eat anything and re-learn how to swallow liquids if she's not going to want anything while she's being covered by the TPN/lipids... that just seems silly. I mean, we're 3 weeks out here and have been struggling for each and every day of it! How are we supposed to make improvements?!?! Argh.

Mimi and PopPop drove into town to help for a couple weeks to allow Daddy to go back home and back to work. Emma Kate was excited to hear they had arrived, and seemed very anxious to show them right off to the playroom... too bad it was already bathtime! :)

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.

Saturday evening

Emma Kate was a little out of sorts today, don't know if it is some pain due to the activities she did yesterday or not. She got two doses of morphine to try to help with any pain if that is the issue. She has been demanding to be in her wagon nearly every waking moment, even taking a nap in it at one point today! She loves to be pulled around in it, which to me seems to get boring after a while, seeing the same things over and over, but somehow it never gets old for her! She still seems to have discomfort in her throat, and naturally it's still painful when she coughs and sneezes. It's been hard to assess and deal with. We're also seeing an ongoing trend with her blood pressure being elevated, and we don't know if it's a pain thing or related to her surgery in some other way. She didn't pass much urine today and is looking a little bit puffy, so her fluid balance is off a bit, again, it's a bit strange that it's just hitting her today, after so many days without problems. She's still not got much in the way of appetite, and trying to get food in her is very stressful for us, we're trying not to make it stressful for her... which is really hard. She's not sleeping well for some reason, and again, we're not sure if it's pain or something else. It surely doesn't help that she gets interrupted throughout the night still for monitoring or medications. I'll be so glad when she's far enough out to be able to bring her to the Ronald McDonald House where it will be quiet all night... I just hope she's doing well enough at that point to be off of the darn TPN. No big plans for tomorrow as far as I know, everyone seems to be laying low for the weekend it seems.

Friday night

We got transferred out of the CICU and back into the complex airway unit this morning! It has not only made it easier on us to manage, with the baby and all, but it has allowed Emma Kate to finally get back out in her wagon! She is doing amazingly well- the nurse practitioner says Emma Kate gets the crown because she is the queen of progress! She was out of bed playing a little on her mat today, and sitting in her wagon.... a..... lot! It's still hard to assess her level of discomfort, but clearly coughing and sneezing are very painful. Otherwise, she's been really content, interactive, and smily today. The one hangup we're having is her blood pressure- it's historically been normal, or even on the low end (she required serious medications for it being too low at Wake Forest). We have noticed her heart rate also being higher than it normally is, so we don't know if it's just underlying pain or anxiety versus something else more serious. We're going to check her bloodwork in the morning and make sure her kidneys are doing ok. It's scary to think of the things that could be causing this- her blood pressure was normal going into surgery, and during surgery they actually administered medication to help bring it down because it was high. Hopefully it will settle down soon and I can quit worrying about it.

It was amazing to me tonight while putting Emma Kate to bed, she was breathing so easily and quietly, and when I put my hand on her chest, I was so thrilled that it was rising and falling smoothly as opposed to vibrating with each breath. What a wonderful difference!!!

I'm not sure if she cheated a little on the hospital bed or not, but Gretta rolled over onto her tummy this afternoon! (I think the bed may have been slightly angled... :)

Thursday evening

It has been quite a big day for Emma Kate- she had a bit of a restless night, and has been requiring her PRN morphine every two hours, and it tends to last her a little less than two hours... assessing her pain has been a bit challenging. Unfortunately, she threw up her feeding tube early this morning, so this one lasted under 12 hours... she's hooked back up to her TPN again so at least she is getting nutrition somehow... hopefully she will be more comfortable eating and swallowing in the coming weeks, and the vomiting mucous will subside quickly... Today she got all her remaining IV catheters removed, as well as the chest drain- that thing was humongous and way in there, so hopefully having it out will improve her comfort greatly! She also had a dressing change over the incision site and it looked great. She's been talking a little bit to us, and although her voice is hoarse and high-pitched, it's wonderful to hear! She's been assessed by the speech pathologist, who is thrilled that she is talking, and was happy to see her swallow two of the tiniest tastes of applesauce this afternoon. PT/OT visited her as well and got her smiling several times by making her stuffed animals do "GYMNASTICS!" on her legs and bed. It was really cute. We tried watching "The Lion King" but it didn't captivate her for long, and we were back to Dora and Aristocats... :) She'll be moved back to the complex airway unit tomorrow, and has been released from bedrest, although I don't think we're going to push much in the near future- she went through a lot today, and hopefully will have a decent night's sleep!

Wednesday evening

After much anticipation, Emma Kate did actually get extubated today! We were told it would likely be around 8 or 9am, and although she seemed ready, the team was still rounding for hours... it was almost noon before it actually happened. She did really well considering that, although it was really hard for us to watch for so long. She also got her foley catheter removed, and she has urinated normally after that which is great. We're struggling a little bit with her pain management, it's so hard to tell exactly what discomfort she is in... she has a little bit of a whine on exhalation, and it's difficult to tell if she's showing pain that way or if it's related to her laryngeal paralysis. She's on tylenol regularly, as well as morphine as needed. Sometimes the morphine seems to make a difference and other times not so much. She's still getting a precedex drip as well. She sat up a couple times today and was actually watching "Aristocats" which is her new favorite by far. We all have it well memorized of course. Hopefully tomorrow she will have her arterial line removed and if her chest drain doesn't have significant accumulation of fluid, it will also come out. They are looking at getting us out of the cardiac ICU and back to the complex airway unit sometime before the weekend, but it will happen when it happens of course... Until then, we're hoping to get a little bit of enteral feeding going through another NG tube while we have the chance, before she vomits this one up. We are hoping that being on the medications for pain, she might be a little more sedate, and possibly less likely to vomit it out so quickly. When it does happen though, it will be the end of the NG tubes- we are not going down that well travelled road again, as it just doesn't work for her. Someone mentioned possibly getting the speech pathologist to come tomorrow to assess her for oral feedings, and they did go ahead and start up her TPN this evening as well so the bases are at least covered for now.

Gretta has had a great day, mostly nursing and napping, and her awake time was jolly! She can be so personable sometimes, making the cutest little expressions and moving her arms like a silly little dance. I get a big kick out of the change in her forehead when she perks up! I call it her "LBR" or Little Brow Ridge... it's so precious!

Tuesday evening

Well, Emma Kate is through with surgery and is now in the cardiac ICU. She got into the OR around 8am (after waiting in the prep area for over an hour... with a not-too-enthusiastic-two-year-old, it was a bit challenging). We got to stay with her until they gave some versed- she got quiet, then just started giggling... it was really sweet. She didn't mind at all when we had to hand her off to the nurses. They kept us updated on progress fairly regularly through the procedure, and by 3:30 or 4pm, the two doctors came out to talk to us. She did well through the surgery, but there was an awful lot of scar tissue from the first operation. It took them a LONG time to carefully dissect everything out and leave minimal damage. They enlarged the insertion of the left pulmonary artery first, using a pericardial patch (fancy that...) and splitting on the opposite side, and now it is slightly bigger than it would naturally be. They don't expect any future issues with it but it will be monitored regularly. Then they addressed the airway- they performed a slide tracheoplasty and they were able to do it they way they preferred as far as where it attaches front to back. They did end up leaving the patch in place, and she's left with a short airway that has 3 tubes at the bottom instead of two- her pig bronchus comes off down at the carina now, along with the two mainstem bronchi. There is a bit of a "figure 8" to her trachea now, which is often expected with these, and they don't think it will be a big issue. Unfortunately, there was so much scarring around her left recurrent laryngeal nerve, and with all the manipulation it has endured with the two procedures, they suspect there is damage to it (likely permanent) and that she will have paralysis of her left vocal cord. They have assured us that there is a good likelihood that she will compensate for it and that we might notice a hoarse voice and there is a potential for some increased swallowing issues until the compensation is established. Apparently children compensate a whole lot better than adults do for this issue.

So she is set up in the cardiac ICU for the night with hopes of extubating tomorrow as long as she "behaves herself." Lets hope she does and the healing can begin.

Tuesday morning

Well, here we are on surgery day... Emma Kate did great yesterday and enjoyed most of the day out in her wagon- it's so much fun for her! We even rode down to the cafeteria for dinner, and Emma Kate was in a slightly better frame of mind for eating, although we still only got about 1/4 of a ravioli and 2 blueberries in her before she started getting stressed out about us offering more food. She was happy to get back in her wagon for the ride back upstairs.

Surgery is planned this morning at 7:30. Sounds like there is a chance that they will pretty much redo everything that has been done. The pericardial patch will be removed and a slide tracheoplasty will be performed. They will also examine the reinsertion of the left pulmonary artery and determine if they need to redo that as well. I guess the echo showed "acceleration" there, and the CT scan showed some possible infolding of the wall of the vessel. The nuclear scan showed 70% of the blood from the heart going to the right side of the lungs and 30% going to the left, so there might be some restriction there. It's something they probably wouldn't get too excited about it if we weren't already opening her chest again for something else. Better to get it addressed this time and hope to avoid the need in the future.

We'll keep everyone posted after surgery and through the next few days, but we will be very busy, especially since Gretta won't be allowed in the cardiac ICU where she will be recovering for several days.

Emma Kate's first "toooobless" walk around the unit

Friday evening

We've had a couple of awesome days this week- Emma Kate has made great strides in her PT and is walking unassisted now (albeit a little flat-footed still) and she usually only needs help if she sneezes really hard and it throws off her balance! She's squatting and standing up great and can lean a bit to reach for things. We even got to go to "Emma Kate's Personal Gym" where they have some nice equipment for her to play on and to get a change of scenery. Everyone has been really impressed to see how much she was getting out and walking around the unit! Yesterday we even met with Dr. Rutter again to make sure we were doing the right thing- she has been doing so well and breathing so easily even with activity, compared to what she was doing a couple weeks ago. But yes, this is the right path to take... he was pointing out to us (again) that all it might take is another little illness to "have the wheels fall off the cart again." So we are scheduled for surgery Tuesday morning at 7:30am.

The cardiologist did find something on her echo to suggest that she might need some dilation at the site of reimplantation of her left pulmonary artery and ordered a nuclear scan to determine perfusion of her lungs to decide if dilation was necessary. Emma Kate did awesome for the scan- they just used her PICC line to inject the isotope (?) and she had to sit under a camera for 4 minutes being very very still. She was actually so good that she was moving a bit from laughing and being a little overzealous with responses to our questions! Luckily the scan was good and showed no defects, so we are good there. Looks like we're just up for revision of the airway surgery, thankfully.

Today, I guess you could say... "here we go again..." She started with a low grade fever, high heart rate, and increased rate/effort of breathing very early this morning. It has responded well to tylenol, but she was under the weather all day, just hanging out in bed and taking short naps throughout the day. They did a nasal swab and a pharyngeal suctioning for cultures and testing to determine if there's anything serious going on. She finally perked up a little bit this evening and was enthusiastic about dinner but didn't actually take a whole heck of a lot in. She fell asleep very easily this evening and hopefully will have a quiet night.

The poor little girl has definitely been touched-out, and she's upset easily by getting her temperature taken in her armpit, or even trying to wash her. Hopefully the emotional effects of being messed with constantly will wear off after being home for a while, and the same hope is there for eating- hopefully she hasn't just had so many things shoved in her mouth and nose that she has an aversion to putting food in her mouth. This could be more complicated than I ever would have thought, even after we end up going home.

Surgery Day

Surgery will be Tuesday the 11th at 0730. It is about 6 hours total where she will be on heart/lung bypass. If all goes to plan (yeah right), we are in PICU for a day to two and then complex airway for 2 weeks and then RM House for another week. Then discharge! Robyn has more details so we'll let her post more if I missed something.

Monday evening

We got to meet the infamous Dr. Rutter today! He was very nice and explained his plan for Emma Kate... He feels like she is far enough out from the initial surgery to go ahead and do a revision. We will be getting her another CT angiogram tomorrow and a cardiac echo wednesday. Then she will go to surgery as soon after that as they can get her booked. So it could be even as early as Thursday it seems. The hope is that she can be extubated the following day, spend a few days in PICU, then a couple weeks in the complex airway unit, then a couple weeks locally (at RMH I hope) then we should be able to go home. Knowing Emma Kate, she will defy all logic and upset the plans in many ways, but that's the basic idea. We've learned well that things don't happen until they are happening, so we're still waiting to see. Dr. Rutter plans to do the slide tracheoplasty technique on her, and they have to get a bit creative with the design since her trachea has already been opened and patched, plus she has the pig bronchus that changes the options too. He hopes that this will be a permanent fix and that she will be asymptomatic for life. She will be on cardiopulmonary bypass again for the entire surgery, about 6 hours he estimated. Hopefully she won't have the same issues with blood pressure and edema like she did after the last surgery... One other risk (of many, of course) is irritation of her left recurrent laryngeal nerve and resultant weakening of her left vocal cord. Usually this just causes a hoarse voice for a few weeks or an increased rate of aspiration, but it usually gets better with time and sounds like it should resolve completely if it does become a problem.

Right now Emma Kate is doing great- she is breathing slower and more comfortably than she has since November 1, and is walking unassisted around the unit several times daily. She is also having fun riding in the wagon they brought for her to use. She still has significant issues with coughing, and we seem to be having a bigger and bigger issue with vomiting and hope all it is is withdrawal symptoms... they've stepped up her taper quite aggressively and she's supposed to be done in just a couple more days. Today the vomiting was much worse, and sometimes seems unexplained. We're having more and more trouble getting food to stay down, and she's still up on full TPN and Lipids. This has become quite the puzzle. Hopefully it will respond to some zofran and the poor girl will catch a break!

Emma!!

Yay, we have our camera again!!