8 Months Old

Lynnea is eight months old now. She had a pretty good day today. She was in a better mood than yesterday, so I'm guessing she's feeling a little bit better. This morning they pulled out her chest tube, and removed her A-line, and her IJ (the line in her neck through her jugular vein), so all she has now is one peripheral IV in her hand (which we're really hoping doesn't go bad before Thursday). She moved out of the PICU back over to 5A this afternoon, and she seems happy to be back (we're in the same room that we've been staying in for the past two weeks, so it probably feels pretty familiar to her). She had another echocardiogram today, but I haven't heard any results from that. She has a CT Scan scheduled for Thursday (which will require and IV, which is why we hope the one she has lasts that long), so we will be in the hospital at least until then. She is still on a tiny bit of oxygen support, but hopefully she won't need that for much longer.

Recovering

Lynnea spent the day recovering in the PICU. She will probably be moved out to the general floor tomorrow. She was taken off from the ventilator a couple hours after moving out of the OR up to the PICU. She is still on some oxygen support, but seems to be doing pretty well (she absolutely hates having the nasal cannula in again though). She's been pretty grumpy since she woke up from the anesthesia, but this isn't particularly surprising. This evening, she was feeling pretty spunky, and managed to ruin one of her peripheral IV's by kicking her legs so hard. She bled all over her blanket, but she's fine now. She still has her arterial line in, and her chest tube is still in. I believe the plan is to pull these sometime tomorrow. They have slowly re-started her G-tube feeding at a slow rate with unfortified breast milk. Hopefully she will manage to get some good rest overnight and have a good day tomorrow.

Out of Surgery

We talked to Dr. St. Louis a short while ago. The surgery went fine. After doing a bunch of diagnostic testing -- looking at pressures in her heart compared to pressures elsewhere in her body -- St. Louis concluded that there was no reason to do any aortic arch repair; her aortic arch is as good as it's going to get for now. So, since he didn't need to do any reconstruction, he didn't need to go in through her sternum again, instead, he went in through a small incision in her side. He pulled her aorta away from her pulmonary vein, but he's still not convinced that it really did much good as far as helping increase the blood flow through the vein. She will have another CT scan in a few days to determine whether this procedure did any good. Most likely, St. Louis will still end up reconstructing the pulmonary vein at the same time that he goes in to do her Glenn procedure. This will make that surgery much more complex than it normally would have been, but he feels that it's probably better to do it all at once rather than doing it as two separate procedures. It sounds like we will probably have all of that done sometime later this summer.

Surgery in the Morning

Lynnea will have another heart surgery tomorrow (Monday) morning at 7am. Dr. St. Louis plans on reconstructing the part of her aortic arch that is still a bit too narrow, as well as repositioning the aorta slightly so that it is not pushing against her pulmonary vein (I learned the other day that Lynnea only has one pulmonary vein, not two, like most people. . . just an interesting little tidbit). His hope is that, by moving the aorta, the blood flow in the pulmonary vein will no longer be blocked, which would eliminate the need for him to reconstruct the pulmonary vein in the future (he says that if it needs to be reconstructed, he would be able to do it during her next surgery, which should be the Glenn procedure). He expects the surgery to take about four hours. She will be placed on partial bypass, which is significantly less risky than complete bypass. Overall, the procedure is relatively minor compared to some of the other surgeries that she has had, and Dr. St. Louis expects it to go well. I will keep everyone updated throughout the day tomorrow.

Surgery on Monday

Lynnea had another pretty good day. This morning she was in a good mood -- lots of smiles for the resident doctors during rounds, and she was even fairly tolerant during her echocardiogram. This afternoon she was fussy, but overall appears to be doing well. She is still off from the oxygen, and has been doing fine. I had a conversation with Dr. St. Louis this afternoon about possible surgical options for Lynnea. He has booked the OR for her on Monday morning (I'm not sure if it would be a 7am or 8am start time) but he still hasn't made a final decision about exactly what he plans on doing to her. Corey and I have discussed it (because Corey was at work when I was talking to Dr. St. Louis) and we will discuss it further with Dr. St. Louis over the weekend and come up with a concrete plan.

The Wizard of Oz

Lynnea had another OK day. She is off the oxygen completely for now. So far, she has managed to keep her saturation levels up, except for a few dips into the low 60's this evening that didn't last very long. Tomorrow we should find out more about when she will have her surgery, and what exactly they plan to do (I guess there is still some discussion about whether, or not, they really think that they can fix her problem without actually reconstructing her pulmonary veins).

This evening, my parents stayed at the hospital with Lynnea while my brother, Tim, took Ashlyn and me to a HopeKids event. We went to see The Wizard of Oz musical put on by Stages Theatre Company in Hopkins. It was fun. I enjoyed getting to spend some much needed quality time with Ashlyn, and it was good to get out of the hospital for a little while.

Tired and Queasy

Lynnea's saturation levels continued to stay up today. Unfortunately, she was very lethargic all day, and she's really not tolerating her feedings well. The doctors don't seem to have any good explanations for the feeding problems, and I haven't talked to them about how incredibly tired and sleepy she was all day. The rumor about her surgery is that it might happen next Monday, but no one is willing to give a concrete date/time just yet.

Still Waiting. . .

Lynnea has been keeping her saturation levels up throughout the day yesterday and today, which is very encouraging. She is still on a little bit of oxygen support, but most of the time she has her nasal cannula places other than in her nose (she's a big fan of only having it half in, and she still frequently manages to get it out of her nose entirely). She appears to be feeling better overall, and, now that she's feeling better, she's tired of hanging out at the hospital. She appears to be bored, so the nurses and I have had to continually find new ways to keep her happy. Today she spent time in the infant swing (which is something she often enjoys, but with all of the extra cords and wires that she's hooked up to in the hospital, it can be challenging to get her in and out of it, so I don't use it unless I'm pretty desperate), and we found a bunch of new toys for her to play with. She is constantly trying out new positions to lay in her crib as well; laying sideways is a favorite, and earlier today she took a nap laying upside down (which is kind of funny because the head of the bed is raised to help her breathe easier). We are still waiting for a surgery date; everything we've heard is that the plan is still to do it sometime next week.

The Low Saturation Levels Continue

Lynnea has been dropping her saturation levels more and more frequently over the past two days, which is a big concern. Last night, she was up several times coughing, and then her saturations would dip down into the 50's, and it was difficult to get her to settle down and go back to sleep (which is pretty unusual for her). She is also beginning to show signs of not tolerating her bolus feedings again -- she started to gag and spit up during a few of her feedings today. Dr. St. Louis stopped by this morning during rounds. Even though all of her viral cultures came back negative and her blood work looked good, he is still worried that the cough she has is due to some sort of illness, so he's hesitant to operate on her in the near future. At the same time, he is also very concerned about her low saturations and increased work of breathing, so he knows that she needs surgery soon. His plan for right now is to watch her closely over the next couple of days and then decide when the best time to operate would be.

Feeling a Little Bit Feisty

Lynnea seemed to be feeling a little bit better today -- she and I played several rounds of "where does the nasal cannula belong" throughout the day; she thinks that it belongs in her hand, or on the top of her head, and I think it belongs in her nose. Obviously, in the end, I always win out, but that doesn't seem to stop her from giving it her best shot. Overall, she had a pretty good day, until this evening when she decided to drop her saturation levels into the low 50's again around bedtime. There doesn't seem to be any obvious explanation for it (for instance, it's not happening just because she's upset or anything), which makes it a little scary. In the end, they just end up turning her oxygen up for awhile until her saturations come back up, and then the slowly turn the oxygen back down.

Blood work was done a couple of days ago to see if her white blood cell count was elevated (a sign of infection). Everything looked normal. So far, all of her viral cultures have come back negative. Without any concrete sign of infection, the plan for now is to try to see if Dr. St. Louis has any openings in his surgical schedule either late next week or early the following week for her. I believe the feeling among the cardiology team is that her symptoms are probably all cardiac related (probably heart failure, though no one is actually saying that yet because her last echocardiogram still looked OK) and operating on her sooner rather than later would be the best thing for her.