Today's Heart Catherization

Lynnea made it through yet another heart catherization without any problems during the cath itself, though she did spike a fever afterwards, and no one is really sure why. I'm not sure if she is still running a fever (it was still above her normal temp the last time the nurses checked, but "technically" it wasn't a fever -- probably because she was given Tylenol; we'll see what it is after the Tylenol wears off).

The first issue of concern was her pulmonary vein stenosis. For the past week and a half, or so, at home, Lynnea's sat's have been a bit low, her heart rate has been high, she has been wheezing (and has not really been clearing after her nebulizer treatments), she gets sweaty even when she's not upset, and she hasn't been tolerating her feeds as well as usual. These symptoms typically point to some sort of a cardiac problem, and these are all symptoms that we have seen a few weeks after each of her cutting balloon dilations, so it was no surprise that her pulmonary vein, once again, had narrowed and needed to be ballooned open again. This is the third time that Dr. Gruenstein has performed the experimental cutting balloon dilation on Lynnea. Prior to the first dilation, her vein had narrowed to 1 millimeter; after the first dilation, it opened up to 3.5 mm. One month later when she had the second dilation, her vein had narrowed back down to 2.4 mm, and after the second dilation it opened up to 3.5 mm again. Today her pulmonary vein had narrowed down to 2 mm, and after the dilation it only opened up to 3 mm. So, Dr. Gruenstein isn't sure if this is really working, considering that we don't seem to be making much progress. He's not willing to give up on it yet -- the cardiologist in Cleveland who has done this on three or four other patients warned that it typically takes three or four times before any real progress is seen. So, Dr. Gruenstein plans on trying at least one more time before giving up on this process.

The second issue of concern was her aorta. The spot that was stented during her last cath still looked pretty good, though Gruenstein attempted to open it up a little bit further by sending a balloon through it. The real concern was an area near the stent that had narrowed since last time, and because of its location, cannot be ballooned or stented open. To tell how bad narrowing is in the aorta, they measure the gradient of blood flow through it. A high gradient is bad, a low gradient is good. Prior to stenting last cath, the gradient across the narrowed area was 40. After stenting, it was 10, which is good. Today the gradient through the stent was still 10, but the area near the stent was up to 40. Dr. Gruenstein feels that, because he can't balloon or stent the spot that is narrow, she will probably need more surgery to repair it sometime in the near future (he was pretty vague about when he thought this would need to be done, and when I talked to Dr. St. Louis briefly in the hallway today, he hadn't had a chance to look at the cath results yet).

The third issue was her B-T shunt. Just like last month, Dr. Gruenstein feels she is outgrowing it and it needs to be replaced. Again, we're hoping that Dr. St. Louis will be able to replace it and address the issues with the aorta at the same time.

Due to the concern about the aorta, Lynnea is scheduled to have a CT scan in the morning to get an even better picture of things. Because of this, the doctors decided to keep her intubated and sedated until morning. As has become the pattern with Lynnea, keeping her sedated has been a challenge. She has built up a bit of tolerance to many of the sedatives that they give her, and manages to wake up even after she has been given significant doses of medication. Since Fentanyl, and Versed were having very little effect on her (she was awake and trying to sit up despite the several boluses of each she had been given), she was switched to Ativan, which so far seems to be doing the trick. Hopefully she will have a peaceful night, and be able to go home sometime tomorrow.

Making Potato Soup

Yesterday, Ashlyn, Lynnea, nurse Michelle, and I made potato soup for supper. Lynnea enjoyed sitting in the middle of the kitchen floor playing with two potatoes that we gave her. She would hand one to me, and one to Michelle, and then want them both back again. She thought this was a really fun game. Ashlyn helped wash the potatoes, and then helped stir the soup, and tasted it to make sure that it was good. It was fun to have a "normal" day cooking with my two little girls.

Home Until Next Tuesday (Hopefully)

Today we played the all too common "to discharge, or not to discharge" game all day, and this evening they finally decided to send us home. Lynnea's triponin levels that they checked last night still looked fine, and she seems to be in stable condition, so the cardiology team felt that it was fine for us to go home for now. She has another heart catherization scheduled for next Tuesday...I don't have an exact time, but she is scheduled as the second case of the day (so probably late morning). The doctors feel that the most likely cause of her extra high hemoglobin levels is her narrow pulmonary vein. The narrowing of her pulmonary vein causes her blood-oxygen saturation levels to dip even lower than her usual, which makes her body think that it should try to compensate by producing more red blood cells, which contain hemoglobin. Hemoglobin is the part of the blood that carries the oxygen, so more hemoglobin should mean higher sat's. Unfortunately, in Lynnea's case, this doesn't really bring her sat's up, and it can cause extra problems because more red blood cells means thicker blood, which is more likely to clot off her B-T shunt (this is why she takes daily aspirin as a blood thinner). Hopefully, another heart catherization which will include another cutting balloon dilation should open up the pulmonary vein enough so that her body stops producing extra red blood cells, and her hemoglobin levels should return to normal. If her hemoglobin remains high after the cath, they will look at other options, including changing some of her medications (most likely increasing her aspirin, or adding an additional blood thinner).

Back at Our Home Away from Home

This morning Lynnea had an echocardiogram and appointment with her cardiologist, Dr. Gruenstein. After looking at her echo results, Dr. Gruenstein "didn't like what he saw" and decided to admit us to the hospital again to run a few more tests. Lynnea had a chest X-ray, an EKG, and some lab work done. During afternoon rounds, there was some debate about whether, or not, Lynnea's echo really showed a decline in heart function, and increase in her tricuspid valve regurgitation (this is not a new problem, and often varies in severity, which is generally a pretty good indicator of early heart failure for her). Dr. Pyles, the attending cardiologist this week, and Dr. Bass, head of the cardiology department disagree on the echo results, but the both feel that her EKG from today actually looked a little bit better than the last EKG that she had done. Her lab work showed that her hemoglobin is higher than normal (her levels always run a little on the high side, but today's results were high even for her) which the doctors can't explain. It also showed that her triponin levels were normal, which is a sign that she is not in heart failure. She had more labs drawn this evening, again to check her triponin levels, just to make sure that the earlier results were accurate. I haven't heard the results of her chest X-ray. For now, the plan is to keep her here overnight to continue to monitor her, and if she seems to be remaining stable, and doesn't have any unforeseen issues, they might discharge her tomorrow.

Happy Birthday Lynnea!

Birthdays are always important milestones, and in Lynnea's case, being able to celebrate her birthday today was extra special because there were several times over the course of the past year that we were reminded that reaching her first birthday was not a guarantee. During her first year, she had five heart surgeries, six heart catherizations, she spent 176 days in the hospital, and 189 days at home. We celebrated today with a party that included grandparents, aunts, uncles, and a few of our close friends. We were worried about how well Lynnea would handle having so many unfamiliar people around at once because she still has a significant amount of stranger anxiety, but as long as Mommy and Daddy stayed close by, she really seemed to enjoy herself. She was excited about the balloons, and curious about the cake. She stuck her fingers in the frosting, and then promptly began to fuss because her hands were sticky. She absolutely refused to allow any cake or frosting into her mouth, but we kind of expected that from her. She had fun pulling presents out of the gift bags, she liked playing with the wrapping paper, and Ashlyn did her big sister duty of "helping" Lynnea open her gifts. Ashlyn also acted as "gift inspector" and thoroughly checked out all of the new toys before giving them to Lynnea to play with.

Lynnea has another cardiology appointment at the U of M on Monday. We are hoping to spend at least another week at home before she needs to go back into the hospital for another heart catherization, but we'll see what Dr. Gruenstein has to say about that.

"Stable Respiratory Status"

Lynnea was discharged from the hospital again this afternoon. After discussing her situation with some of the doctors (Dr. Martin -- the attending cardiologist this week, Dr. St. Louis -- the surgeon, and Clare -- Dr. St. Louis' nurse practitioner) we decided that we are comfortable enough with having her at home, even though she is still coughing a lot, and her sat's are still lower than normal. Corey, Ashlyn, Lynnea and I are all still coughing and feeling a little under the weather, but it is nice to be home, and I think we will all appreciate sleeping in our own beds tonight.

Another Day in the Hospital

Lynnea continues to keep her sat's lower than usual, but still does not require oxygen support. She is still coughing, sneezing, and wheezing. The nurse this morning informed me that during rounds the doctors were discussing the possibility of sending her home tomorrow. This evening the note in the computer said "discharge pending stable respiratory status." I have no idea what the doctors are considering "stable respiratory status" these days, but the way I see it, she hasn't really improved any since we brought her in on Saturday, so I'm pretty sure she won't be ready to go home tomorrow. I haven't actually talked to any doctors since Saturday when we were in the E.R. because they have been doing rounds in the hall and neglecting to send anyone in to talk to me afterwards. This is nothing new; the same thing happened last time we were in the hospital. It's frustrating, and incredibly irritating.

Anyway...since I haven't posted any pictures in awhile, I figured I should do so now. So, here is a picture of Lynnea snuggling with Corey at the hospital, and a picture of Ashlyn that I took the other day when she decided to style her own hair.

Influenza A

Lynnea's rapid culture for influenza A came back positive; they sent the H1N1 culture, but we won't know the results of that for a few days (a lot of positive influenza A patients actually have H1N1). Overall, Lynnea had an OK day; she's grumpy and has had a difficult time getting the rest that she needs due to her cough and difficulties breathing. Her sat's are still low, but she is still getting by without any extra oxygen support. She is getting her nebulizer treatments every four or five hours, and we're giving her Tylenol around the clock for comfort. This evening she seems to be in a better mood -- not screaming at everyone who walks through the door, and doing "naughty" things like pulling on her G-tube, trying to get her oxymeter probe off, etc. I am hoping that tonight she is able to get more rest than last night because we could both desperately use a good night's sleep (I have also managed to catch the flu, which makes it pretty miserable to be in the hospital trying to take care of a sick baby).

Sick Again

Lynnea is back in the hospital. She is coughing, wheezing some, her sat's are kind of low (low 70's instead of high 70's), this morning her heart rate was high, and she was running a fever. So, the doctors are running viral cultures again, they did a chest X-ray which looked fine (no signs of pneumonia), and they are running her labs. It looks like we'll be hanging out here until Lynnea is back to her usual self (hopefully this will only take a few days, but with her, sometimes it takes a little longer).

One Step Forward, Two Steps Back

Lynnea was able to come home from the hospital today, and she has been very happy and excited ever since. Unfortunately, last night, and again early this morning, there were some "irregularities" that were showing up on her EKG. It turns out she has what is known as a "heart block." Heart function has two main components: electrical (the system of electrical signals that tell the heart when, and how hard to beat), and "plumbing" (the muscle, arteries, and blood vessels that allow the heart to efficiently pump blood to the entire body). Up until now, Lynnea's heart problems have all been with the plumbing part of things, while her electrical system has been fine. Now it looks as though the electrical signals that that tell her heart when to beat are not coordinated exactly as they should be. The doctors had a discussion about it this morning, and are hoping that this problem is pretty benign. They said that, in a normal healthy adult heart, this problem wouldn't be an issue, but since Lynnea is a baby, and more importantly, the anatomy of her heart is very different from most people, they aren't exactly sure how serious this could end up being. They sent her home with a small monitor to record her EKG for 24 hours so that they can get a better look at how often her heartbeat is irregular. This will help them determine whether or not a pacemaker is something that she will need to correct the problem.

On a lighter note, I noticed today that Lynnea now has seven teeth, four on top, three on the bottom. As always, we hope that she figures out that they are for chewing food sometime soon (rather than just grinding them, which she seems to like to do, and which drives me crazy).