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.

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.

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.

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.

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.

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.

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.

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.

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.

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.