Tuesday, May 31, 2011

An update and a plug

So, it's tomorrow. We are second case (ugh), which means he will probably go into the cath lab around noon, assuming the first case doesn't go late again.

Unfortunately, Magnus going into the hospital tomorrow means we are going to miss the sendoff for the Bike4theCHF riders at the Golden Gate Bridge tomorrow morning. This year, our friends Jeni and Nick Busta will be joining Nels Matson in riding cross-country to raise funds for the Children's Heart Foundation. Magnus is featured on their fundraising page and was supposed to be there for the sendoff tomorrow a.m. I know most of us don't have a ton of spare cash these days, but if you would like to donate in Magnus's honor, you can do so here, and it's for a very good cause.

I will do my best to keep everyone updated with news as we get it tomorrow!

Tuesday, May 24, 2011

Next week

This is the longest stretch Magnus has ever gone without being in the hospital. Not coincidentally, it is also the longest I have gone without updating this blog! But both stretches are now coming to an end.

Magnus's cardiac catheterization is scheduled for June 1. I'm really hoping we'll be first case this time, since last time, frankly, sucked (the first case ran late, so we wound up having to fast Magnus all day until 3 p.m. and keep him entertained in the hospital). But of course, more importantly, we are hoping for good news, or at least, not for bad news.

Magnus has now been on oxygen 24 hours a day for more than 6 months in hopes of controlling his pulmonary hypertension and allowing him to be a candidate for the third surgery he's supposed to have. That's more than 1/3 of his life (he just turned 18 months last week)! This cath is extremely important. We could get either very good news (the oxygen & meds worked & his hypertension is better), very bad news (his hypertension is worse and there's nothing else they can do for him), or, probably most likely, something in between.

From what we can tell from the outside, Magnus has been doing very well. He has been growing and gaining weight, learning new things, and catching up in his gross motor skills (he's getting close to walking). I also feel like he just looks better than he ever has; he looks strong, and doesn't have the puffiness he used to have before. He also has tons of energy, and has been healthy ever since the cold that landed him in the hospital back in January. But who knows? I felt confident that he was doing better at the time of his last cath, right before Christmas, and there had actually been no change. So, we are very nervous.

Monday, February 7, 2011

Mostly Normal

OK, it's February 7th, and I have not updated this blog since before Christmas. I think that's the blog equivalent of still having your Christmas decorations up in February. And here's a confession: the only reason why I don't still actually have my Christmas decorations up is because I never bothered to put any up this year!

Things have been busy, but mostly uneventful. And I suppose it is indicative of our lives these days that a couple of months I would describe as "mostly uneventful" involved hospital visits for 2/3rds of our household!

First, about a month ago, Iggy got hit by a car while he was out riding his bike. Thankfully, he escaped serious injury, but he had cuts and bruises, and the police who happened to be nearby when his accident occurred called the paramedics, who took him to the hospital. His bike was pretty much destroyed. Luckily, the driver was insured. But it was quite an inconvenience...he was in a significant amount of pain and walking with a cane for almost 2 weeks. But he's now pretty much completely recovered.

Our second hospital experience was just last week. On Monday, Magnus starting coughing and having the sniffles. By Monday night, his nose was very congested, and he was obviously pretty miserable (nasal cannula + snotty baby = no fun for anyone). We didn't really think much of it, though until Tuesday night around 9 p.m. when he woke up crying. Iggy went in to comfort him, and then a minute later, he called for me to come in the room. I could tell from the tone of his voice that something was wrong. Magnus was making weird noises and seemed to be having trouble breathing. Then he started coughing and vomited. We started discussing what to do. My mind was racing...on the one hand, it was of course very scary that he was having trouble breathing. On the other hand, it might just be because he was stuffed up, and I knew that if we brought him in to the hospital, they would admit him, which would mean a night of no sleep for me, and a day of lost wages for Iggy, not to mention that the hospital is just about the least pleasant place to be when you are not feeling well. I thought perhaps Magnus would recover, but the scary breathing would continue. That's when I felt like we had to take him to the hospital. At first, I thought we would drive him there, but then I started to worry about what would happen if he stopped breathing altogether on the way there. The hospital is about a 15-minute drive from our house...that's plenty of time for something to go badly wrong, so we decided to call 911.

Within 5 minutes, half a dozen paramedics were in our house. They put an oxygen saturation probe on Magnus's foot, and his sats were actually fine, even though he was still having trouble breathing. And then we were off to the hospital. Iggy rode in the ambulance with Magnus, and I took the car and met them there (I actually beat them there by a little bit, which was good, because I was able to meet up with them at the ambulance entrance).

To make a long story somewhat shorter, we ended up in the ER at UCSF, and within 10 minute of arriving at the hospital, his breathing was back to normal. One of the pediatric cardiology fellows came down to see us, she spoke on the phone with our regular cardiologist and the attending cardiologist, they all decided we should be admitted, and then after several hours of waiting around for a bed upstairs, we wound up back on our old stomping grounds of 7 North a little after 1 a.m.

We were hoping he would get released in the morning, but I started to get a bad feeling when our nurse reported back that at morning rounds there had been no discussion of us going home. I asked her if we could talk to one of the doctors, but several hours went by with nothing happening. That is, unfortunately, one of the down sides of being one of the wellest patients on the unit...nobody pays much attention to you.

We've spent enough time in the hospital now that we understand how things work, which makes the process slightly less frustrating, but I was still irritated. (Here's a funny aside: being used to "hospital time," Iggy and I were pleasantly surprised when he was released from the ER within a couple of hours after his bike accident. One of us commented on how efficient the ER was, and one of the nurses who overheard us did a double take and said "we don't hear that very often!") I had to leave for work at 11 a.m., and I knew I wouldn't be back in the city until 10 p.m. (and yes, this on top of a mostly sleepless night at the hospital), and since I had to drive to work, I knew that even if Magnus were released sometime during the day, Magnus and Iggy would have no way to get home.

Finally, our nurse managed to get ahold of one of the fellows, who told her that since Magnus had come in on an emergency call, he had to stay a minimum of 24 hours for observation! This seemed absurd to me, but at least now I knew I could take the car to work. Unfortunately, though, Iggy had been planning to go to a show that night that he'd been looking forward to for months (we were planning to have our babysitter stay late that night) and now he wouldn't be able to go.

Then, later that afternoon, the attending doctor came around and said that Magnus actually could go home, even though it hadn't been 24 hours. But Magnus and Iggy had to wait for me to come back from work with the car. Sigh.

Throughout our stay at the hospital, all the doctors we saw told us that we did the right thing in calling 911. With his pulmonary hypertension, any respiratory problems could be imminently life-threatening. And yet...nothing was actually done for him medically at the hospital. His breathing problem resolved on its own and never came back. And instead of being able to be sick in relative comfort at home, Magnus had to be sick at the hospital, where he was poked and prodded and subjected to noisy roommates. I had a night of barely any sleep, and probably not coincidentally ended up catching Magnus's cold. Iggy missed a day of work and missed going to his show. So, you know, knowing what we know now, calling 911 was clearly the wrong decision. But of course based on the information available to us at the time it was the right decision, and if I were in the same situation again, I'd do the same thing.

OK, judging by how much I have written (and this was the very abridged version), I guess the last 6 weeks have been more eventful than I thought. But mostly we have just been living our normal lives. Magnus has finally started getting physical therapy and has been making lots of progress with his gross motor skills. He is now a very good sitter and supported stander. He can pull up from sitting to standing, although rarely chooses to do so. And he's SO CLOSE to being able to crawl, but hasn't quite put together all the pieces of the puzzle. Instead, he sometimes does a funny modified crawl where he crawls with both legs and one arm, but keeps one shoulder on the ground. Iggy calls it the "wounded Marine!"

He also FINALLY got a third tooth this week. His first two teeth came in within a week of one another back in late September/early October, and everyone told us that they would start coming in quickly after that, but all this time he's had plenty of teething symptoms, but no actual teeth. One of the nurses in the cardiac unit told me that cardiac kids frequently have delayed tooth eruption. I tried to see if I could find any other information about tooth delays, but there's not much out there. I haven't been too worried because you can see that he HAS teeth in his gums, they are just taking their sweet time in coming out. So, between his tooth situation, his gross motor skills and his size, he looks like a typical 9-10 month old. Of course, given that he's 14 months, that is not optimal, but it's better than when he was 8 months old and was the size of a 2 month old. We're moving in the right direction.

Wednesday, December 22, 2010

Well, that was fast

We're home!

I think that sometimes the speed with which you get discharged is really just a matter of the whims of whatever doctor happens to be in charge of you. This time around, the doctor's whims wanted us out of the hospital, and so we are. Magnus is fine, albeit a bit crabby. He had a low-grade fever this morning (an expected reaction when a foreign object, like titanium coils, is placed in your body) but seems OK now.

And I'm going to take a nap.

Tuesday, December 21, 2010

"Not bad news"

We're back up on the ward. Magnus woke up about half an hour after they turned off his propofol IV, and gulped down some sugar water. We had to do a few things to get him adjusted, but now he's back asleep again, and I'm really hoping for a peaceful night! We have one of our favorite nurses tonight, so that's a big plus.

When we got back up to the ward, Magnus's regular cardiologist was here. She had only spoken briefly with the cath team, but she said that she wasn't too disappointed by today's cath. "It's not bad news," she said. "He could have gotten worse." She said that she was hoping to get us off the oxygen, but obviously that's not going to happen until his pressures start to improve. She also said that she was heartened by the fact that they were able to do what they set out to do today in the cath lab. She also laid out a bit of a longer time frame for his next cath, something like 3-5 months from now.

So, yeah, I guess that's pretty much how we're feeling. We didn't get great news, but we're relieved that we didn't get really bad news, either.

All done

We're in the anesthesia recovery unit right now waiting to see Magnus. We got the call that they'd finished up a little after 7.

The good news is pretty much what you've already heard: the cath itself went smoothly, and they were able to coil off his remaining collaterals in less time than they expected.

The bad news: his pressures are not too much different. However, the doctor who I spoke to on the phone, who was rather pessimistic with me when Magnus had his last cath, said that this may just be because not that much time has passed since his previous cath. The upshot is that he will need ANOTHER cath in a couple of months, and then we will really hope to see some improvement in his pressures. That cath should hopefully also be easier because they will hopefully just be checking his pressures and not doing so many interventions.

We had hoped that this cath would give us good news about his pressures and that maybe then we'd be able to wean him off the oxygen, but I guess not.

The update

Just called in: everything's going "fine," they're still coiling off collaterals, and will probably be another hour or two. Not sure if this completely rules out unpleasant surprises, but I guess so far, so good!