Saturday, October 30, 2010

Ahead of schedule

We were scheduled to come in to the hospital next Friday for Magnus's catheterization, but apparently he just couldn't wait and we are here a little early! The good news is that he's doing fine now, and I fully expect us to be sent home in the morning (though we still have to come back on Friday).

On Thursday morning, I noticed that Magnus was having some stomach trouble. I'll try to avoid going into too many vivid details here! I sent him to his nanny share with 2 extra outfits, just in case, but he came home in the same clothes I'd sent him in, and on Thursday night he seemed about the same.

Later that night, though, he got to be extremely fussy, and Iggy decided to disconnect him from his feeding pump around 1:30 a.m. because he seemed to be having such an upset stomach. Magnus kept Iggy up most of the night, and then when I came on Magnus duty at 4:30 a.m., he was super fussy and looked dehydrated to me. I offered him a bottle and he wolfed it down. And then another and another. But it was passing right through him. It occurred to me that maybe we should take him to the doctor, but I knew that the only real treatment for diarrhea was hydration, so I just kept giving him bottles.

When the clinic opened at 9 a.m. I called and made an urgent care appointment for that afternoon, because he was supposed to see his early interventionist that morning. Iggy went in to work early. But Magnus was rapidly getting worse and worse. All of a sudden he was completely soaking through a diaper every 20 minutes. I called the clinic and asked if I could bring him in right away, and they said OK. I fired off an e-mail to his cardiologist saying that I thought we'd probably be admitted, gathered up a few essentials, and we headed to UCSF.

The drive there takes about 20 minutes, but it felt a LOT longer. Magnus was very quiet, so I kept putting my hand on his head to see if he was still moving. He was. Then, the parking garage was completely full. I had to drive around for another 20 minutes looking for a space, while Magnus continued to be scarily quiet. At one point, I just stopped the car to get out and take a look at him. He didn't look good. He was lethargic and pale, with sunken eyes. While I was driving around the parking garage, I missed a call from the urgent care clinic saying that since he was a heart patient with severe diarrhea, they would automatically want to give him IV fluids, so I should just take him to the ER. Of course, I didn't get the message until we were already in the waiting room at the clinic, so they took his vitals there and then sent us across the street to the hospital.

Once we got to the ER, there were a million people in the room, and they immediately started trying to put an IV in him. Even under the best of circumstances, Magnus is a hard stick. First of all, he's a baby, and then he's a heart patient who has already had a lot of his best veins tapped out in previous hospitalizations. Add severe dehydration to the mix, and I was not optimistic. So everyone set to work trying to locate the best vein whisperers in the hospital. Meanwhile, one of the cardiology fellows came down to assess him and said that not only did he need to be admitted to the hospital, but that given the vehemence of his stomach problems, he needed to be in an intensive care unit.

With all this excitement was going on, Magnus hadn't had anything to drink for over an hour. He had actually drunk his entire day's allotment of bottles at home, so the only thing I had with me for him was a vial of frozen breastmilk I'd grabbed on my way out the door. I asked the nurse if it was possible to just give him some pedialyte by mouth while we were waiting for the IV, and eventually someone rustled some up, and wow, he started drinking like crazy. The hospital pedialyte comes in 2 ounce bottles, and he was sucking them down in less than a minute. I only had one nipple, so when I had to wrestle an empty bottle away from him to switch out the nipple on the new bottle, he would start crying and holding onto the bottle as hard as he could. Normally, he won't even drink pedialyte, but he drank 13 bottles of it while we were down in the ER.

It took TEN tries by four different people to get his IV started. Needless to say, this was a distinctly unpleasant experience for all parties involved. Finally they got an IV in his foot, but then it turned out that whenever he moved his foot, the IV would clog up. After all that, he wound up never even getting any IV fluids!

After a few hours in the ER, we got moved upstairs to the pediatric ICU. He's always been in the cardiac units previously, so we'd never been on that floor, but we ended up having some of the same nurses we'd had before. Going up to the floor from the ER was a surreal experience. The pediatric unit was having a Halloween party, so we walked down a corridor full of people dressed up in costumes and Halloween decorations.

Magnus got a small amount of pedialyte through his G tube, but he mostly made up for his dehydration with continued vigorous drinking. In fact, he drank so much that by the middle of the night, he was looking puffy to me. In the morning, when the doctors did rounds, I learned that in his time in the hospital, Magnus had a positive fluid balance of one liter, meaning that even with continuing to have diarrhea and some vomiting, he had taken in a liter more of fluid than he'd put out, which is pretty amazing, considering his size and the fact that he'd taken nearly all of that by mouth!

By this morning, while he was still having tummy trouble, it seemed more like the garden-variety sort. The doctors said they wanted to keep him one more day, but he was clearly on the mend so we started him back on breastmilk. Unfortunately, he seems to be having some trouble handling the breastmilk, which is making me a little nervous about our prospects for getting out of here tomorrow morning.

This afternoon we got moved up to the cardiac ICU. He doesn't actually need to be in an ICU but they have us here because he might be contagious so they don't want him mixing with the general patient population. It's actually a lot nicer in here because we get our own private room with a TV! So we didn't even have to miss the World Series (although boo that the Giants lost). And tonight I will only have to be awoken by ONE crying baby!

Anyway, everyone keep your fingers crossed that we'll get out of here tomorrow. If not, I guess at least it's a good thing that he's way too young to care about spending Halloween in the hospital!

Saturday, October 16, 2010

Cath scheduled

Magnus's cardiac catheterization will be on Friday, November 5th. I'm not sure exactly when because the case order doesn't get decided until the last minute. We definitely hope to be the first case of the day, because he'll have to be fasted for several hours beforehand, and it's easiest to do that while he's asleep. Also, the last time he had a cath, he was first case and actually got to go home from the hospital the same day. However, that cath was a more straightforward procedure just to check things out in preparation for his Glenn, so I'm not sure if avoiding an overnight stay is a possibility again this time, but it would be awfully nice.

In preparation for the cath, I had to bring Magnus in for a flu shot last week. Magnus's pediatrician wanted him to get it well in advance of his going into the hospital. He's pretty amazing; he screamed when the needle went in, of course, but in less than a minute, he was over it and was smiling and happy when we went to go visit some friends who work at the hospital afterward, showing off his TWO new teeth. Yes, he went for more than 10 months with nary a tooth, and then just one week after the first one popped through, another one started to come in, too!

Tuesday is going to be Magnus's 11-month birthday, which means that his real birthday is coming up soon! As you may recall, we never had a baby shower for him, so we're excited to finally have a real party to celebrate, although actually planning a party seems totally overwhelming to me right now, since I continue to be incredibly busy at work. Somehow, we'll get it done, though.

It's obviously a huge milestone for Magnus to celebrate a birthday. I don't like to dwell too much on how grim things seemed at this time last year, but suffice it to say that Magnus has brought tremendous joy to our lives and we have a lot to celebrate. And yet, perhaps the most exciting thing for me about Magnus turning one is the prospect of weaning!

I breastfed Magnus for a few weeks initially, but when we stopped using his NG tube, I switched to exclusive pumping so that he could take fortified breastmilk with formula powder mixed into it. Yes, I have been exclusively pumping for almost a year! When you count setup and cleanup time, I spend about 2 hours every day pumping breastmilk. But beyond the time committment, the hardest part of pumping has really been the feeling of being shackled to the breastpump! Every few hours, I have to find a private place to pump, which for the most part has meant that I haven't ventured too far from home. Then there's the physical discomfort, and the, uh, anatomical changes that mean that although I now fit into my pre-pregnancy pants again, I still can't wear most of my pre-pregnancy shirts. And I've had to deal with fun situations like students knocking and knocking on my office door while I pump before a 4-hour lab class, knowing that I am inside, and wondering why I won't open the door! So as you can tell, I'm pretty excited to finally feel like I have my life and my body back!

Monday, October 4, 2010

One more time

Magnus had a cardiology appointment this morning. Unfortunately, his head has continued to grow a bit, plus his oxygen saturations were on the low side, in the low eighties instead of the high to mid-eighties. The upshot is that this means a trip to the cath lab and another brief hospital stay sometime in the next month or so.

I suppose this is not good news, but it's not the end of the world, either. The thinking is that both his increased head pressure and low sats are probably due to either collateral veins or a narrowing of something in his circulation, both of which can be pretty easily fixed with a cath. If it's not either of those things, then they can at least do some poking around and measure his pressures. There is a possibility that they wouldn't find anything from the cath, in which case we just wouldn't do anything.

We're not exactly thrilled that he has to go back to the hospital, but the head size thing has been hanging over us for a while, plus I have noticed that he's seemed a bit bluer lately, so it would be really nice if the cath could fix these problems and we didn't have to worry about them anymore.

He also had an echo at his cardiology appointment today, and that looked good, so everything else seems to be OK. He did have a cold last week (the second one he's had in his life), but has otherwise been doing well. He's getting better at sitting up on his own, and even got his first tooth last week, on the same day as our 2nd wedding anniversary!

Last week, Magnus also saw a feeding therapist, which was really helpful for us. We've been trying to get him interested in solid foods for 6 months now, with no real success, and were feeling pretty discouraged about the whole thing. The feeding therapist said that he was somewhat "orally defensive," (though it seems to me that it is rational to be "defensive" about strangers putting things in your mouth?) and suggested that we just put him in his high chair for a short time each day and let him play with a few kinds of food. So far, this mostly just means that he ends up with pureed squash in his ears and hair, but occasionally he will lick food off a spoon. She also suggested that we buy some tools to stimulate the area around his mouth and to help him practice chewing, so those are on order.

To finish up, here's a cute video from this weekend. Arlo's mom and I have known each other since we were 5 years old, and now we live a few miles from one another and have sons who are 2 months apart in age. And yet we have been really awful about taking the time to get together. I think that's going to change, though, especially seeing how much fun those two have together!