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.