Saturday, May 30, 2009

Feeding Problems

All week Lynnea has been having a difficult time tolerating her G-tube feedings. It started out as just a feeding here and there (usually the feedings that included giving her medications) upsetting her tummy, but by Thursday all of her feedings, including her overnight drip were causing her to spit up. So, last night we called the U and ended up taking her in to the ER to have her electrolytes checked. They said she's fine. They increased the amount of acid-reducer that she's on (Omeprezole), told us to keep her on a constant drip feed, and sent us home. They called to check in with us this morning to see how her feeding went overnight; the overnight feeding went OK, so they told us to watch her over the weekend and follow up with our primary doctor here in Zimmerman on Monday. Well, shortly after getting off the phone with the doctor this morning, Lynnea started spitting up again, and has been spitting up off and on all day. For now, we'll just keep an eye on it, and hope that there's some way to get her in to the clinic on Monday (getting same day appointment at our clinic is pretty much impossible, which is super frustrating). Our cardiologist, Dr. Gruenstein, didn't seem to think that this was a cardiac problem, so he's not concerned about it. We're not sure how or why he so easily ruled this out without actually doing another Echocardiogram on her (or having anyone from the cardiology team examine her), but he did, and we hope he's right (not tolerating feedings is a potential early sign of heart failure).

Friday, May 22, 2009

First Tooth

Lynnea has been fussier than ususal since we came home from our last hospital stay, and now we know why: she has her first tooth, and her second should come through any day now. I've only gotten a brief glimpse of this tooth -- she's being rather tight lipped about the whole situation -- but I've felt it, so I know it's the real deal. Also, since we've been home, she's been having all kinds of fun doing new things. She's decided that the black and white bag that's bigger than she is would make a great purse. . . it's never too young to start learning how to accessorize. She has also decided that her G-tube extension is a really fun thing to grab and tug on. . . it tastes pretty good too (we keep trying to tell her that she doesn't need to put it in her mouth because her food is taking a more direct route, but she won't listen). And, she has mastered yanking her Nuk out of her mouth, now we just wish that she would master putting it back in. We hope to continue enjoying our time at home until she goes back in to the hospital for her next heart catherization that is scheduled for June 4th at 8:00am.

Ashlyn has also enjoyed our time at home as a family. Potty training continues to go well -- we haven't had any daytime accidents for the past couple weeks (we still haven't switched her into a "big girl bed" so we continue to put a diaper on her at bedtime and nap time). She loves helping take care of Lynnea, and getting some quality time with Mommy and Daddy.

Monday, May 18, 2009

Lots of Appointments

Today I took Lynnea and Ashlyn (with lots of help from Megan) to the U of M for some doctor appointments. We started our morning off with Lynnea's echo and Dr. Gruenstein appointment. Dr. Gruenstein said her echo looked good (the same as the last one). He is hoping to be able to do another heart catherization on her the first or second week in June, and then go from there to decide exactly when she should have her next open-heart surgery. While we were in the hospital last week, Dr. Kochilas seemed to think that Lynnea wouldn't need the next surgery until later in the summer (July or August), but Gruenstein is thinking it should be earlier than that. . . of course, the final decision will be from Dr. St. Louis, and as far as I know, no one has has asked him when he would like to do this yet, so we still don't really know when it will happen.

After we finished up with Lynnea's early morning stuff, we moved on to Ashlyn's echo. Yes, we also decided that it would be a good idea to have an echocardiogram done on Ashlyn because, even though no one has ever heard a heart murmur on her, she has been turning blue around her mouth and eyes since she was tiny, and now seeing all of Lynnea's problems, there was enough reason to have one done as a precaution. Unofficially, the echo tech said that she's fine, which is a huge relief.

Then, this afternoon, Lynnea had Physical Therapy and Occupational Therapy. Both went much better this time than they did a month ago when we were in. She's making great progress. Now, the big thing is getting in some much needed tummy time (which she absolutely hates) before her next surgery.

Wednesday, May 13, 2009

On Our Way Home

We are all packed up and waiting for the discharge paperwork to get done, and then we are on our way home from the hospital again. We are running Lynnea's tube feedings over 1.5 hours, instead of 1 hour, which seems to be helping her tolerate them better. She still has a little bit of a cough, but it seems to be getting better everyday, so everyone is OK with us going home today (although Dr. St. Louis did say that we are certainly welcome to stay another night if we want...obviously we don't really want to do that).

Tuesday, May 12, 2009

Maybe Tomorrow

This afternoon during rounds, Dr. St. Louis said that, as long as Lynnea still seems to be doing OK, she should be able to go home tomorrow (even though, he kind of implied that he would prefer it if she would stay until Thursday). As far as her virus goes, she seems to be doing a little better today -- still coughing some, but still not needing any oxygen or other support. Unfortunately, I'm afraid that she isn't really tolerating the increased amount of food that we've started giving her during each of her feedings; I'm hoping that the they will just tell us to run her feeding pump at a slower rate and still send us home tomorrow, but there's a chance that this is just the kind of thing that would give St. Louis an excuse to keep us an extra day, so we'll see.

Monday, May 11, 2009

Disagreements about When We're Going Home

It turns out that one of the viral cultures that were done on Lynnea came back positive; she has Parainfluenza, which is a flu virus that isn't particularly serious, but can cause some serious respiratory problems (like pneumonia or bronchitis) in infants. There isn't anything they can actually do to treat the virus, and since Lynnea started coughing last Monday, she should be on the tail end of it, and is probably past any significant risk for complications. She has been off from oxygen since yesterday, and has been doing fine.

This morning during rounds, Dr. Kochilas (one of the cardiologists) felt that we should be able to go home sometime today, or tomorrow, but before he would discharge us, he wanted to double check with Dr. St. Louis (Lynnea's surgeon) just to make sure that he was also OK with us going home. Well, Dr. St. Louis was in surgery all day, so we didn't get to talk to him until late this afternoon. It turns out that he feels that Lynnea should stay here at least until Wednesday, or Thursday. Dr. St. Louis' reasoning was that, babies that have had a Norwood procedure, but haven't had the Glen procedure (the next heart surgery that Lynnea will need) are at a high risk for having things go very badly if they happen to catch a respiratory virus like Lynnea has, so he feels that she would be better off staying here so that if she is showing any signs of a respiratory infection (like pneumonia) we can recognize it right away and treat it as soon as possible. On one hand, I understand his desire to use some extra caution where Lynnea is concerned, but at the same time, it's not like Lynnea is receiving any sort of treatment right now -- like I said before, she's off the oxygen and breathing OK on her own, her cough is not as bad as it was when we came in, and there's nothing more that they can do for her to speed up her recovery in any way, so sitting here in the hospital until Wednesday, or Thursday seems a little silly. But, Dr. St. Louis seems to always have the final say in these things, so if it makes him feel better having her stay here, obviously that's what we'll do. I just hope that by Wednesday her cough is completely better so that he has no more reasons to keep us any longer.

Mother's Day

Sunday, May 10, 2009

Hanging out at the Hospital

Lynnea had a pretty uneventful day yesterday. We tried taking her off from her oxygen for awhile yesterday, but she seems to do better with it on. We will try taking her off again today to see how she does. She's still coughing some, but not quite as much as on Thursday and Friday. During the night she had one long coughing fit that required suctioning again. The plan for now is to stay for at least one more day and hope that she continues to improve so that we can go home without any oxygen support.

Friday, May 8, 2009

Home for a Month, Now Back in the Hospital

When we were discharged from the hospital last time, I had said that my personal goal was to get to stay at home for a whole month. Well, on Wednesday, it had been a whole month. Now we're back at the hospital. Lynnea has had a cough all week, and Wednesday evening it started to get worse than it had been earlier in the week, so, yesterday we called her Home Health nurse to come and check her to see if it sounded like she had anything in her lungs. The nurse said she was wheezing a little bit, and recommended that we have her seen at the hospital. We called the hospital to let them know, and of course, they insisted that we have her seen by her primary care physician at the Zimmerman clinic. Well, that's a little complicated considering that Dr. Ferry, her primary doctor, very abruptly left the clinic a couple of weeks ago and we haven't actually chosen anyone new, plus, when we called the clinic to see if anyone was available to see her, they told us that they didn't have any available appointments with anyone all day (and our clinic doesn't have any urgent care hours). So, this left us with the only option being taking Lynnea to the E.R. We had the choice of taking to the U of M, or to Princeton, and for some reason we chose Princeton (because they're a whole lot closer, they're a much smaller hospital which we hoped would mean a shorter wait in the E.R., and a small part of me was still really hoping that, when they took her chest X-ray, there would be nothing significant and we could simply go home). After spending nearly four hours in the E.R. in Princeton, the cardiologist at the U told the doctor in Princeton that he wanted us to come in. Lynnea's chest X-ray was clear for the most part -- no signs of pneumonia or fluid, but the fear was that her cough could be a sign of heart failure, so they wanted to do another echocardiogram. We arrived at the U of M around 9:45pm, and we went to the E.R. because the cardiology fellow was still hoping that, if they did an echo and it looked OK, we wouldn't have to actually be admitted to the hospital. Well, her echo looked pretty good, but her cough is awful, they ended up admitting us anyway. Respiratory Therapy gave her a nebulizer treatment, but that only helped a little bit. She's on oxygen support because her saturation levels are lower than they would like (she's sitting in the 60's - low 70's, but they would really like to see her in the high 70's). They are testing for viruses, and so far the rapid responses for influenza and RSV have come back negative. The doctors still haven't done morning rounds (because it's Friday, and the cardiology team always rounds late on Fridays) so I'm not sure what the plan is from here. If I had to guess, I'd say they're going to want to watch her for a few days to see whether she gets any better (or any worse, for that matter) and we'll make a plan from there.