Saturday, October 31, 2009

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.

Thursday, October 22, 2009

"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.

Monday, October 19, 2009

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.

Sunday, October 18, 2009

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).

Saturday, October 17, 2009

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).

Monday, October 12, 2009

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).

Sunday, October 11, 2009

Maybe Home Tomorrow

Lynnea has been tolerating her bolus feedings all day today, so we will probably go home tomorrow. She now has a cough and has been sneezing a lot, but unless she gets significantly worse, the doctors feel she would probably be better off at home where she is less likely to catch any other illnesses. Her sat's have been fine. There was some sort of abnormality showing up on her EKG earlier this afternoon, so she had to have labs drawn; I have not heard any lab results yet, which probably means they were fine. We're hoping for a quiet night, and as long as there are no surprises, we'll head home sometime tomorrow.

Saturday, October 10, 2009

Starting to Feel Better

During the night last night Lynnea was taken off from oxygen support and has been doing fine breathing on her own ever since. This morning she was moved out of the PICU and back onto the general floor (5A). Her rapid influenza and H1N1 cultures came back negative, but the final results are still pending, so for now she's still in isolation, which is nice because we get our own room. Today they began slowly restarting her feedings. Most of the day she only got small bolus feedings of Pedialyte. She was gaggy during her first one this morning, but has handled the rest just fine. At 7pm they started her back on a slow continuous drip of formula, and so far it seems to be going OK. If she handles the formula all night, then tomorrow morning they'll slowly start her back on bolus formula feedings. If all goes well, I would guess we might get to go home on Monday or Tuesday. Last night Lynnea decided that she was thirsty, and for the first time in many months, allowed us to put water into her mouth. She was willing to "drink" water off from an oral swab (a small mint flavored sponge on a stick). She continued this today and over the course of the day drank a couple of ounces of water, which was really nice to see. Of course, this evening she is back to swatting my hand away whenever I offer her a drink, so either she's not thirsty, or she remembered that she hates having anything in her mouth. Sometimes she's just silly like that. But, overall, she appears to be feeling much better than she has been all week, which is very encouraging.

Friday, October 9, 2009

More Disappointing News

Lynnea had her heart catherization this morning. The procedure itself went fine, and Lynnea is doing OK. Dr. Gruenstein performed another cutting balloon dilation on her left pulmonary vein. He continues to have high hopes that repeating this procedure a few more times may open up her pulmonary vein enough so that she can eventually have the Glenn procedure done. There was some narrowing of her aorta that has been a slight concern for a while now (so, not a new problem) that had gotten worse. So, Dr. Gruenstein decided to put a stent in to open the area up. There was also another spot on her aorta that was narrow that had not been narrow before. This spot is near the place where Dr. St Louis merged her aorta and pulmonary artery when he did the Norwood procedure, and it is not a place that can be ballooned or stented open. At some point, probably in the relatively near future (it would need to happen before she can have the Glenn, which of course, is still unscheduled so it's difficult to have a clear idea of when it would actually happen) this would need to be addressed surgically. Also, today's catherization showed that she is beginning to outgrow her B-T shunt. Dr. Gruenstein told us that it will probably be necessary to replace her B-T shunt with a larger one some time soon; he's hoping that Dr. St. Louis will be able to replace the shunt and repair her aorta at the same time.

Lynnea will be spending the night in the PICU, and as long as she remains stable, she will move back to the general floor tomorrow. They were able to extubate her a few hours after her cath, and she is only on a little bit of oxygen support. We will be staying in the hospital until Lynnea is able to tolerate her feeds again.

Thursday, October 8, 2009

Still Planning on Doing Heart Cath Tomorrow

Lynnea was restless and fussy all through the night last night, and much of the day today. Her sat's have been fine, she still sounds a little wheezy, and her upset tummy continued throughout the day today. The cardiology team still feels that it is in her best interest to go ahead and do the heart catherization tomorrow morning. I don't have an exact time, but the best estimate they could give me was around 11:30am.

Wednesday, October 7, 2009

Back in the Hospital...Again

Yes, we were home for less than 24 hours this time, a new record, though not necessarily one to be proud of. This morning when our home-care nurse, Michelle, arrived at our house, she listened to Lynnea's breathing, and, of course, Lynnea was wheezing again. So, we gave her a nebulizer treatment. This helped some, but did not completely clear her lungs like it usually does. Also, during Lynnea's morning feeding, she was gagging and spitting up. She was not running a fever or anything, but she was really crabby. We waited for a few hours until we could give her another nebulizer treatment to see if that would clear out her lungs. It didn't. And, during her noon feeding, she began throwing up even more than she had this morning. So, Michelle called the hospital and told them that Lynnea really needed to come back because she was in worse shape than she had been on Monday when they first admitted her. So, we're back in the hospital at least until her heart catherization on Friday; they put in an IV, and are giving her IV fluids to keep her hydrated because she's not tolerating her feedings, they did another chest X-ray (I haven't heard how it looked), and they are running her labs to make sure that they are all still normal. Maybe we'll know more tomorrow, though I suspect that we won't have any real answers until after her heart cath on Friday.

Tuesday, October 6, 2009

At Home Until Friday

This afternoon the doctors decided that Lynnea is fine and should go home until her heart catherization on Friday. From a cardiac standpoint, I agree nothing has changed in the past 24 hours that would warrant keeping her in the hospital until Friday. Unfortunately, her temp is a little higher than normal for her, she's irritable, and she is gagging during her feeds. My guess is that she might be getting sick. If I'm right, they will probably have to reschedule her catherization. We'll see how she does tomorrow. On the bright side, she is definitely happy to be home, which is really good to see.

Monday, October 5, 2009

Clinic Visit Turned Hospital Stay

This morning Lynnea had another cardiology visit at the U of M with Dr. Gruenstein. We told him that things haven't improved since we were in a week and a half ago. She still has some wheezing in both lungs; she clears when we give her nebulizer treatments, but the wheezing returns within a few hours. Her sat's have been running a little lower than her norm over the past week at home, and this morning when we were in clinic she was sitting in the low 60's. She had another echocardiogram this morning, and Gruenstein said it looked OK, but it was pretty obvious that Jim, the echo tech, did not think it looked good at all. Also, Lynnea is not gaining weight the way that she should. All of these factors managed to get us admitted to the hospital. The plan is to run viral cultures on her to make sure she doesn't have any viruses (they still haven't swabbed her; it's been an "on again, off again" order all day, and it still hasn't gotten done). Even though she doesn't appear to have any sort of illness -- no runny nose, no coughing, no fever -- it's nice to run the cultures because it means she gets a private room at least for 24 hours. She tentatively has another heart catherization scheduled for Friday (I don't have a time, but I heard she'll probably be second case, so not first thing in the morning) to get a look at her pulmonary vein to make sure that it's not closing up on her again (it most likely is). Rumor has it that we should expect to hang out in the hospital at least until after her heart catherization, so it looks like we'll be here all week. Lynnea doesn't enjoy being here, and it's challenging to keep her entertained.