Wednesday, September 30, 2009

11 Months Old

Lynnea is now eleven months old. She still refuses to roll over, but she continues to make strides in her motor skills in general. This week she's been doing this cute little "butt bounce" -- she lays on the floor on her back, puts her feet on the floor and pushes her butt up in the air repeatedly. She thinks it's really funny. We're waiting for this to become more of a "scoot" than just a "bounce." She also still refuses to let food, or anything that she thinks might be food, anywhere near her mouth most of the time, though today she was willing to gnaw on an apple and on a carrot stick for awhile. She's teething, so I'm sure the apple and carrot felt pretty good against her tender gums. As far as her health goes, her sat's have been staying up in her normal range again, but we'll see if they stay that way now that we're back to only giving her nebulizer treatments when she sounds wheezy (we'd been doing it three times a day since Friday because that's what her pediatrician told us to do to help clear out her lungs), and now that her five day course of steroids are done (also to help clear her lungs). The combination of teething and being on the steroid has made sleeping difficult for her (and everyone else in the house...). Hopefully, she will find a way to sleep peacefully again sometime soon.

Thursday, September 24, 2009

An Unscheduled Trip to the U

Lynnea's blood-oxygen saturations have been running low the past two days (low 60's before a neb treatment, low 70's after; normal for her lately has been 77-82), so our home care nurse called Dr. Gruenstein and Dr. St. Louis yesterday to inform them about it, and to ask what they wanted her to do about it (bring her in? give her oxygen?). They neglected to call her back, so when Lynnea's sat's were low again today, our nurse again called about it. Dr. St. Louis felt that Lynnea should be seen by Dr. Gruenstein today, so we brought her in for a clinic visit. They did an echocardiogram, a chest X-ray, and some lab work. We spoke with both Dr. Gruenstein, and one of the cardiology fellows, Dr. Shepherd and they felt that her echo still looked OK, her chest X-ray was clear, and her labs looked OK, though her hemoglobin is a little bit high, so they sent us home and told us to keep an eye on her sat's and let them know if they continue to run lower than usual. Corey, our nurse who came with us, and I all felt that the doctors weren't entirely convinced that Lynnea is really OK, but there wasn't any obvious reason to admit us to the hospital, so they sent us home and told us to come back for another clinic visit with Gruenstein on Oct. 5. It is frustrating to not have any answers about why her sat's are running so much lower than usual, and we hope that we are not headed towards another long hospital stay in the near future.

Saturday, September 19, 2009

Breaking Even

Lynnea has now spent as many days at home during her life as she has in the hospital -- 162 each. Now, if we're lucky, we won't have any more long hospital stays before her birthday, and then she'll be able to say that she spent more time at home during her first year than in the hospital. I'm optimistic about it.

This week Lynnea decided that she loves to play peek-a-boo, and other assorted made-up baby games that involve people copying things that she does (like clapping, and shaking her head back and forth). She has also decided that nap time is a complete waste of her time, so she avoids it whenever possible. Tooth number four showed itself on Wednesday -- she now has three on the bottom, and one on the top (if we could only convince her that these new sharp objects that have invaded her mouth are good for chewing food, life would be great). We expect another tooth or two soon.

I had an interesting conversation with Ashlyn yesterday about doctors and nurses. She was pretending to be a nurse, so I asked her, "what do nurses do?" She replied, "They listen to people with a stethoscope, and they weigh people on a scale." So, then I asked, "What do doctors do?" She answered, "They listen to people with a stethoscope." I asked, "Do doctors help people get better?" Ashlyn answered, "No, they just talk a lot." That made me laugh pretty hard. Then I had to ask, "Do nurses help people?" Ashlyn replied, "No, they just like to poke people with sharp sticks." Apparently Ashlyn still harbors ill feelings towards the nurse that immunized her at her last doctor's visit.

Saturday, September 12, 2009

Home Again

Lynnea was discharged from the hospital this afternoon. She was taken off the ventilator yesterday afternoon, and has been doing pretty well ever since. Yesterday, after all of the doctors and nurses were done picking on her, she sat with me in the rocking chair and was very playful. Last night she did not sleep well, and she was pretty grumpy today until we were discharged. Now that we are home, she is in a pretty good mood, and is genuinely happy to be away from the hospital.

Friday, September 11, 2009

Another Heart Catherization with Unexpected Results

This morning's heart cath went fine from a procedure standpoint, but, like every cath that Lynnea has, the results were not exactly what Dr. Gruenstein was expecting. He went in expecting to take some pictures, and then discuss Lynnea's aorta with Dr. St. Louis to determine what they wanted to do about the remaining blockage in her aortic arch. Well, for now the discussion about her aorta has been placed on the back-burner, and the focus is on the more pressing issue of her left pulmonary vein. We were aware of the blockage in her pulmonary vein, but today's cath showed that the blockage is worse than expected, and worse than it was during the last cath. Lynnea only has one left pulmonary vein flowing into her heart, as opposed to two like most people. On a normal person, each pulmonary vein is about 5 millimeters in diameter. Lynnea's pulmonary vein had narrowed to 1 millimeter. Because of this narrowing, 90% of her blood flow was going to her right lung, instead of flowing equally into both lungs. Dr. Gruenstein presented us with a variety of options for how the pulmonary vein issue could potentially be resolved, each with significant drawbacks, and no guarantees of long term success. In the end, we chose to allow him to perform a procedure that he has never done before, that a cardiologist in Cleveland suggested (this cardiologist has tried this procedure a few times with some success, but it's still a bit experimental, so there's no long term data). Dr. Gruenstein used a "cutting balloon" (a balloon with tiny razor blades on it) to open up the pulmonary vein and place several tiny cuts on the inside of the vein. Then he used a regular balloon to open the vein up more. The results were positive, but he warned us that the doctor in Cleveland has found that the procedure needs to be repeated three or four times before the vein will remain open for any significant length of time. So, Lynnea will probably need to come back to the hospital on a monthly basis to have this done for the next few months. Due to all of this, she will not be having surgery on Sept. 21. That procedure has been postponed, hopefully until this pulmonary vein issue is resolved. Right now Lynnea is in the PICU, she still has the breathing tube in, but she should have it removed later today. There is a chance that she could be discharged from the hospital as early as tomorrow. I will update again when I have more news to report.

Sunday, September 6, 2009

Two Months at Home

We have been home now as a family for two whole months. Lynnea now sits up on her own, claps, and sometimes tolerates tummy time in the beanbag chair. She has also finally gotten another tooth (it's been a long time coming). Unfortunately, we will be heading back to the hospital this Friday (9/11) for another heart catherization in preparation for Lynnea's next surgery on Sept. 21. We had hoped that she would not need another heart cath. before surgery, but Dr. Gruenstein and Dr. St. Louis both thought that it is needed. It is possible that we will be in and out of the hospital on the same day for the heart cath., but that's a best case scenario, and I'm not overly optimistic that we will not have to stay for at least a day or two.

We've also taken advantage of this time at home to transition Ashlyn to a "big girl" bed -- we converted her crib into a daybed. She sleeps OK in it most of the time, except when she falls out and lands on the floor with a nice "thud." It's kind of funny because about half of the time she doesn't even wake up, she just crawls back in bed like nothing happened. (I know this because I've been in the room taking care of Lynnea when she's done this, and it's really hard not to laugh at her.) We're just really glad that it's not a very far fall from her bed to the floor.

Tuesday, September 1, 2009

10 Months Old

Lynnea is 10 months old! Yesterday we had another cardiology appointment at the U of M. As usual, Lynnea hated this. Her echocardiogram showed no significant changes, which is both good and bad news. It's good because it means her heart is still doing OK, so we don't have to move the surgery date up or anything like that. The bad news is that her pulmonary vein did not show any improvement, so when she has her next surgery at the end of September, Dr. St. Louis will need to reconstruct it. We were really hoping to avoid the need for the pulmonary vein reconstruction, but at the same time, this doesn't come as much of a surprise.