There Will Be Blood

I don't remember if I've mentioned this here before, but Magnus likes to scratch himself. He is prone to rashes on his face and he will scratch himself until he tears his skin open if we let him. We try not to let him, but he is usually too fast for us. I cut his nails several times a week, and we put socks on his hands when he's sleeping and when he's in an especially itchy mood, but he can't live his whole life with socks on his hands...he needs to be able to play with his toys and develop his fine motor skills. As a result, our boy usually has an impressive collection of scratches and scabs on his face and head.

Adding to this drama is the fact that one of the medications Magnus takes is aspirin, which thins the blood. So when he scratches, this boy BLEEDS, sometimes quite impressively.

And then lately we have added teething to the mix. I have known other babies with a scratching problem, but Magnus is the first one I've heard of who scratches his gums and makes them bleed.

Anyway, yesterday, Magnus had his 6-month checkup with his pediatricians. Since I work right across the street from the pediatricians' office, and since Iggy stays home with Magnus on Mondays, we agreed that Iggy would bring Magnus in the car and I'd meet them in the waiting room. Their trip was uneventful until shortly after Iggy pulled into the parking garage and Magnus started screaming. When he went to retrieve him from his carseat, he found that Magnus had badly scratched his gums and that his face and hands were covered with blood! His actual wounds were minor, but it was quite a scene.

After we cleaned him up with paper towels and water, we had our appointment, which was mostly pretty uneventful. Weight gain continues to be a struggle, but I was pleased to see that he'd grown almost 2 inches in the last 2 months, so he's catching up linearly, at least! As I expected, the pediatricians recommended that he be evaluated for developmental delays so he can get physical or other therapy to help catch up if needed. There are definitely a few areas where I think he could use a little extra help, especially his gross motor skills and strength, so this is a good thing. I guess we'll be setting that up sometime soon.

Magnus was very charming with his doctors and demonstrated his smiling and laughing quite a bit for them, as well as his ability to use his legs to scoot around when he's lying on his back. I think he liked the fact that the table was covered with that paper stuff and that the paper made a noise when he moved around!

And then it was time for shots. Magnus got 3 injections and 1 oral vaccine, and he was none too happy about it. After he was done, I picked him up to console him, and after I'd held him for a few seconds, both Iggy and I noticed that one of his injection sites had bled so much that it saturated the band-aid and made it fall off. There was blood all over Magnus's leg, my hand and arm, my shirt, and a nice little puddle on the floor that made the bottom of my shoe all sticky. Luckily, I was wearing black so it wasn't too noticeable. The nurse put on a new band-aid, Magnus settled down, and we all went home.

Another funny element to all this is that Iggy and I have been joking for a couple of weeks that Magnus is a vampire baby because he hates it when the sun is in his eyes. I notice it when we are outside, but it is even more pronounced in our house: we have a skylight in our dining room, and whenever we pass through the beam of light while carrying him, he lets out a yelp of displeasure. So I guess the bloody mouth and hands just adds to the joke!

So that was April

It's been a while since I last updated this blog. Since I last wrote, Magnus:

-Turned 5 months old (on the 19th)

-Figured out to roll from back to front and front to back

-Finally figured out how to do a push-up

-Tried his first solid food (rice cereal mixed with breastmilk...not a great hit)

and most importantly

-Has been very healthy and grown a lot!

Magnus is still a very skinny boy, but he's finally passed the 5 kilo mark, and is continuing to gain about an ounce a day. He's also getting taller and is growing out of a lot of his clothes these days, which means he's also growing into a lot of the cute outfits people got us when he was born.

We had a cardiology appointment yesterday, and everything looked good: his oxygen sats were good, his heart and lungs sounded good, and his cardiologist said we could decrease his medication further, so now he's only on one dose of diuretic per day. His next cardiology appointment will be in early June, and that one will be a bit more involved. He'll have to have some bloodwork done, as well as an echocardiogram and an EKG. So, that's not going to be any fun, but if everything still looks good, our next appointment after that won't be for another 3 months!

So really, everything is going about as well as we could possibly hope. Despite that, I still worry a lot. I worry about what will happen with Magnus's health in the future, and I worry that his growth and developmental delays (though extremely minor) will translate to problems later in life. And everything we've been through has left Iggy and myself both a little bit raw. We find ourselves becoming emotional at random moments (like last week, when the Stevie Wonder song "Overjoyed" started playing on my iPod and I had to skip it because I was about to start crying. In fact, just thinking about it now makes me feel like crying!)

But despite all that, life feels pretty good these days. Magnus is mostly a pretty happy boy and he smiles and laughs often. He loves being kissed and tickled and sung to. Everything we've been through has been totally worth it.

Back home

As expected, we got the all-clear to go home around 8 a.m. However, we ended up not leaving until around 11 because of various administrative stuff that I will not bother to go into. But Magnus had a very nice afternoon at home. My parents are in town visiting from the East Coast, which was a very good thing, because I seem to have caught the cold we've been passing around so I was able to nap all afternoon while my parents watched him. Anyway, all in all, this was a pretty easy hospitalization.

An abundance of caution

The bad news is we're back in the hospital. The good news is that it's not serious, and if all goes according to plan we'll be home tomorrow.

On Friday, we had noticed that the top of Magnus's incision from his last surgery was somewhat redder than it had been. By Saturday morning, it was redder, raised, and seemed to have some pus in it. I e-mailed a photo of it to his cardiologist, who forwarded it to the surgeon who said that it looked like breakdown of the suture (normal) that was causing a bit of inflammation. They prescribed oral antibiotics and told us to clean the wound out with betadine, bandage it, and keep an eye on it.

On Sunday it was looking a little better, but then by yesterday afternoon, it had started oozing a little bit, and on top of that, he was showing symptoms of a mild cold. Iggy had been sick since Friday, so we weren't surprised, but we were a little nervous, so this morning, I e-mailed his cardiologist again and said that we wanted to bring him in. She squeezed him in at the clinic this morning, and she said she thought he looked better, but also wanted him to be looked at by one of the nurse practitioners who works with the surgeon. Our regular N.P. was busy with an emergency case, so we saw a different N.P. whom we'd met before but didn't know well. She also said she thought it looked better, but the surgeon, Dr. Azakie, was in a cautious mood and wanted him to be admitted to get IV antibiotics.

So here we are. He's had a dose of IV antibiotics and they cleaned his wound out and dressed it. In the course of cleaning it out, they opened it up a little bit so they want to make sure the wound looks "dry" tomorrow before they send us home. They also took some blood to do a white blood cell count (to check for inflammation) and it came back normal, which is great.

While we're not happy to be back at the hospital, it is kind of nice to have the monitors tell us how well he's doing! His oxygen sats are in the low to mid-80s, much higher than when he left the hospital. I had been a little worried about his sats since they lowered his diuretic dose a couple of weeks ago, but they're perfectly fine! And everyone has been impressed with how much weight he's gained. So hopefully, this is just a little blip and we go home tomorrow.

Post-Glenn

It seems like life has been more hectic than ever in the past couple of weeks, what with being back at work and having out of town visitors and taxes coming up and our car conking out and requiring expensive repairs. But I am having a momentary lull at work and so wanted to post an update!

Magnus had his follow-up cardiology appointment last Monday. They did an echocardiogram (not so fun, he was very wiggly, but it went pretty fast) and everything looked good. His cardiologist told us that her goal is to transition him completely off diuretics, which means that eventually, his only medications will be aspirin and maybe zantac if he still needs it! This was surprising to me and very exciting! And she went ahead and told us to reduce his diuretic dosage from 3 times a day to 2 times a day. It's not a huge change, and yet this makes things tremendously easier for us. For one thing, I don't have to remember to pack his medication for him when he goes to the nanny's. For another, twice daily medication means that we can give his meds at the civilized hours of 7 a.m. and 7 p.m. when he's usually awake anyway, as opposed to before when we had to give him medication at 11 p.m., which was not terribly conducive to getting him to sleep soundly at night.

In addition to the meds being easier, Magnus's weight gain has really taken off since the Glenn, and especially in the last week or so. His post-Glenn physiology gives him a slower metabolic rate, making it easier to gain weight, and his cardiologist also mentioned to us that his diuretic, Lasix, tends to dull the appetite, and we did notice that his eating really improved after we switched to twice-daily meds. The last time we weighed him, we found that he had gained 200g in a 3 day period...that's almost half a pound! He's still tiny for his age, but if he can keep this up, he'll actually be on the growth curve for weight in a couple of months, for pretty much the first time since he was born. He's a bit closer to the curve in his length and head circumference, so maybe he'll catch up on those even sooner.

Magnus's next scheduled cardiology appointment is not until the end of next month. We may end up having to come in sooner if there are any problems, but if not, that will be the longest he's ever gone without seeing a cardiologist in his entire life!

Life at home

This week has really flown by since we got out of the hospital. We went home early on Saturday, and Magnus continued to be pretty fussy for his first few days at home, which made life kind of difficult because we had to go back to our regular work routines. We had a few really bad nights where he would wake up every hour or so. But I would say that as of around Thursday, Magnus was pretty much back to his old self. We posted a couple new videos showing that our happy guy is back.

On Monday, Magnus had his 4-month pediatrician's appointment. We see two pediatricians: a pediatrics resident and the doctor who supervises her. I like this arrangement because it's kind of nice to have two different perspectives on what's going on, and I like both of our doctors individually. Anyway, I think their expectations for Magnus were fairly low given what he's gone through, but we spent much of the appointment assessing his achievement of various developmental milestones, and impressively, he's more or less on track when it comes to most things. The one thing he's definitely lagging on is doing a push-up (but we're not even letting him try to do one right now because he's not supposed to strain his chest muscles until his incision is fully healed). Unsurprisingly, he also hasn't rolled over yet, but again, we don't want him to right now anyway.

So, things are pretty much back to normal around here. In a way, it's hard to believe that Magnus had open heart surgery less than 3 weeks ago.

And then tomorrow, it's our good friend Julianne's turn. Julianne has a different heart defect from Magnus, Ebstein's Anomaly, but her doctors are treating it with the same 3-stage surgical sequence. Julianne's a tough girl, and I feel confident that she'll do great tomorrow, but I'm sure her mom Clare and the rest of her family would appreciate if you stopped by her blog to offer your support, as well as sending your prayers, positive thoughts, good vibrations or whatever ethereal support you have to offer their way!

Going home!

We got the all-clear a little after 8! He's had his dressing changed and an EKG done, and now we're just waiting for cardiology to "come take a look at him" and then we're out of here!