Wednesday, October 17, 2012


Over the past month, food has been a big deal around here. Most of the stuff in this post is probably not of interest to most people, but I am going to give a detailed description of what we've been through in the last month primarily for the benefit of other parents going through the process of tube weaning. This is an area where most of us get little guidance from our medical professionals, so I hope our experiences can be helpful. So as I mentioned in my last post, on September 12th we started trying to wean Magnus off his G tube. We had actually not used the tube for most of the two weeks we were on vacation this summer, and he had managed to maintain his weight pretty well by increasing his formula intake by mouth.

Magnus has always gotten most of his calories from some sort of milk-based beverage. For his first year of life, I pumped breastmilk and we mixed in formula powder to boost the protein and calories. When he turned 1, we transitioned him onto a high-calorie medical formula. The nice things about the formula are that it is high in calories (1.5 calorie per milliliter, or about 50% more calories per volume than human breast milk) and has all the recommended nutrients added to it, so you don't really have to worry about eating a balanced diet. The bad things about formula are that it is high in sugar (in the form of high-fructose corn syrup), heavily processed from cow's milk of uncertain origin, and that when spilled (or puked up), it hardens into a crust that virtually needs to be chiselled off. And, of course, you can't just buy it at the store, which makes traveling difficult and planning ahead essential.

So, the plan starting in September was that he would get his calories primarily from consuming about 24 ounces of formula per day, and then whatever small numbers of calories he got from nibbling at real food would supplement that. And this plan worked great until September 28th. On Friday, September 28th, I called Apria, our home health supply company, to inquire why we had not received the formula order I had placed several days prior. Turns out we had not received the order because they never placed it. We had 2 8-ounce boxes of formula to last us until Tuesday, which was the earliest they would be able to get us a new order of formula.

I was distressed, but also saw it as an opportunity. Our next goal after weaning Magnus off his feeding tube would be to wean him off the formula, and he was doing so well with the first goal, why not experiment with the second? I went to the grocery store and bought whole milk, heavy cream, several kinds of full-fat yogurt, and the highest-calorie puréed soups I could find. I made him bottles (yes, he was still--at age 2 years, 10 months--drinking his formula from a bottle) with a little bit of formula mixed with a lot of whole milk. And he drank it without complaint! This lasted for about a day. And then he suddenly didn't want to drink his bottles anymore. He didn't want to drink ANYTHING anymore except water. I tried chocolate milk, strawberry milk, milkshakes, a couple of samples we had of different kinds of medical formulas, and nothing. He wasn't eating much solid food either. I tried buying him several kinds of new cups, but nothing could convince him to drink a milk-type beverage anymore.

In retrospect, I wonder if all that milk didn't make his stomach upset from lactose. His formula is milk-based, but processed to be lactose free.

At any rate, the milk-drinking strike started on Saturday, and continued even after we got his formula again on Tuesday. He was losing weight fast and acting crabby. His breath smelled like acetone, a side effect of when your body breaks down muscle to use for energy when carbohydrates and fats aren't available. On Wednesday morning, I caved in and tube fed him.

That was also the day he started to really eat. He has "eaten" regular food for quite a while now, but just a few nibbles. He would never take a big bite, and would only eat foods that were soft or easy to chew, like yogurt or Ritz crackers. He would frequently gag and puke when eating solids, and would panic whenever he tried to eat something relatively fibrous, like a piece of fruit.

It was like someone had flipped a switch. Magnus had suddenly become an eater. Whereas before, he would eat 2 or 3 bites of yogurt, now he was finishing off an entire 4-ounce cup of it. He started eating in big bites, and was suddenly game to try just about anything. In September I never would have dreamed that he would eat foods such as almonds or plums or October, he happily ate all of these, WITHOUT PUKING. That's the other thing, the puking has stopped. All his life, Magnus has been a puker. He had progressed from multiple daily pukes as a newborn to maybe once a day puking as a 1 year old, and most recently he would have 2-3 pukes a week. As of today, the last time he puked was on Friday, October 5th, almost 2 weeks ago! He has never gone a week without puking, much less 2!

Last Friday, October 12th, we went in for a follow-up and weight check with Magnus's GI doctors. He had lost a pound over the last month, which they weren't too concerned about. They vaguely encouraged us to continue with the tube weaning, but didn't have a specific plan to suggest to us, so I decided to take matters into my own hands and come up with a plan. I bought a digital scale. I decided that we were going to give Magnus 6 ounces of formula through his tube per day (down from his goal of 24 ounces per day before we started weaning) and he would get all his other calories from real food eaten by mouth. So far, he has been able to maintain his weight. If he's able to do that for a couple more weeks, we'll decrease the formula down to 4 ounces, then to 2, and then, hopefully, to nothing.

Having a child who is starting to eat like a normal person has been a revelation. On Sundays, we often go out for pizza as a family. This is pretty much the only time we ever go out to eat together because it only takes about 10-15 minutes to eat a slice of pizza, which was previously about the limit of Magnus's patience for sitting around watching his parents eat. This Sunday, he ate about 1/3 of my slice, plus a couple of meatballs, and of course, because he was actually eating instead of just sitting there with nothing to do, he was occupied and well-behaved. On the way home, we stopped at a neighborhood playground, and found that a local blogger was doing a photoshoot that involved a "donut tree." She invited all the kids passing by to partake, and Magnus did so enthusiastically. Happening upon a "donut tree" in our slightly gritty neighborhood is unexpected enough, but on top of that to see Magnus finally able to enjoy something like donuts like a normal kid was quite an emotional experience for Iggy and me. So much so that I felt compelled to explain to the blogger that we were weaning Magnus off a feeding tube, and I'm pretty sure she really had no idea what I was talking about, but it was really a very special moment for us. Below is a photo Iggy took, and you can see the blog post here.

While it's very exciting to have Magnus enter the realm of normal eating, it has also been challenging. As most 2-year-olds are, he can be very opinionated about his diet, and it's been hard to suddenly adjust to having to meet his nutritional needs by actually feeding him. He might be able to meet his caloric goals with the Krispy Kreme tree, but we need to make sure the other stuff gets in there, too. Thankfully, he is pretty adventurous about what he will try (especially if he sees someone else eating it first). Anyway, we are keeping our fingers crossed, and are hoping to be completely tube free within a month or two. After that, we would still need to have the G tube in place without being used for 6 months before they would remove it. But we're getting there.

Thursday, September 27, 2012

Normal life

Yes, it has been a very long time since I posted here! Life has been busy, but medically uneventful, for the most part. Nobody has been in the hospital this year except for the 2 days in January when Magnus was in for his cath, which is quite a departure from what we've been through in the last few years! Magnus is doing great, and this month started going to pre-K 3 half-days a week. Magnus is very social, so we'd wanted to do something like this for a while, but his eating issues and feeding tube have been the primary obstacle in the past. He doesn't need to use his feeding tube all the time, but we knew that many places were not going to want to deal with having a g-tuber and having to be prepared for if the tube were to come out. Luckily, we found a place just a few blocks from home that was not daunted by the feeding tube, and since the school day is only 3 hours, we wouldn't have to worry that much about whether he was eating at school. And now we are actually experimenting with 1 month of not using the feeding tube. So far we're about 2 weeks in and he doesn't seem to have lost much, if any, weight! The GI docs say he has to go without using it for 6 months before we actually take the tube out. One thing I'm NOT looking forward to, though, is having to transition him back to taking all his medications orally. We sometimes have had some success squirting a little bit of some of his medicine in his mouth, but I'm sure he's not going to like taking ALL those meds orally twice a day. I have to admit that I have my own set of neuroses surrounding this topic; I used to get a lot of ear infections as a kid and would have to take foul-tasting "cherry" flavored penicillin pills. It was actually so traumatic that I would hide the pills under the couch cushions instead of taking them, even though my parents threatened me that if I didn't take them I could go deaf! Deafness seemed preferable to swallowing those pills! (Luckily, as it turned out, my parents were bluffing, and my hearing is just fine). So that's pretty much where we're at right now. I will end with some pictures of what we've been up to since January:
This was an outtake for the Valentine's cards we sent out this year. It's only from January, but he looks so much younger here!
This spring he tripped and hit his forehead on the concrete floor in our garage. He subsequently developed a huge goose egg and 2 black eyes thanks to his daily aspirin therapy!
Playing in the sand during our East Coast summer vacation. And yes, wearing that same Star Wars shirt!

Thursday, January 5, 2012


We are home!

Whew, the last couple of days have been exhausting. The cath itself really went as smoothly as we could have hoped (including the excellent news that came out of it, AND having one of our favorite nurses both days) and Magnus's recovery was a lot easier than last time. It was mostly easier on us parents, too, although I didn't mention that I did have an hour of anxiety when the cath lab paged us to say that they were finished, and when I called back they said that they were finished but that they "didn't really do anything" and that the doctor would explain when he met with us in an hour or so. This made me very nervous, since the plan going into the cath was to coil as many of his collateral veins as his pressures wouldn't allow, so not doing anything seemed like it meant bad news. As it turned out, they didn't coil any of his collaterals because they felt they didn't need to, and as I mentioned yesterday, basically everything looked as good as could be hoped.

Last time he had a lot of bleeding at the cath sites and clearly didn't feel good for about 24 hours afterward. This time, he was a bit groggy when we first saw him, but the nurse in the anesthesia recovery unit said that he had woken up "really fast" and was mostly his old self right away. After a cath, you're supposed to lie flat and keep your legs straight to protect the catheterization site in the groin. Definitely NOT easy to enforce with an active 2-year-old! We managed to keep him distracted pretty well with videos, but he kept trying to get up and run around.

At 5:30 his "bedrest" was finally over, and shortly after that, we got a pass to go down to the playroom, which we'd never done before. Magnus had a great time playing with toys and drawing pictures, but by 7:30, he was clearly tired, so we took him back to his room and tried to get him ready for bed. Of course, in the hospital, you don't always have a lot of control over your own schedule, and the nurses had to come in and check his vitals and stuff, and with all the excitement, even though he was really tired he didn't end up falling asleep until nearly 10.

Then, at 2 a.m., when the nurse came to check his vitals again, we found that his feeding tube had become disconnected from the feeding pump, and his bedding, pajamas, and diaper all needed to be changed. He didn't fall asleep again until 5 a.m.! We got 2 more hours of sleep and then had to be awoken for more medical stuff, but we basically got to go home first thing this morning! We had a few little hiccups with medication changes (he's now on all once or twice a day meds, which is much easier for us!) and a little bleeding incident when they took out his IV, but we were home by 9:30. And now I am going to take a nap.

Wednesday, January 4, 2012

"A perfect situation for him"

Magnus is done, and we just got an excellent report from the cath doctor! They didn't do much but that's because they said he looks so good they didn't need to do much. The title of this post is a direct quote from what he told us. For the first time, his pressures are low enough that he could be a candidate for the third Fontan surgery, although he doesn't need to have the surgery right now. We also don't have to do another cath for another year! In a few minutes we can go down and see him...last time he woke up pretty unhappy, and I imagine this time will be the same.


We dropped Magnus off at the cath lab a little after 9 and he's still up there. Things generally went smoothly this morning, with the exception that the cold I thought he had entirely shaken was still evident when the doctors and nurses listened to his chest. However, they determined that since the congestion is in his upper airway and not in his lungs, it was safe to go ahead with the anesthesia and cath, but they said it might take him a little longer to come off the breathing tube when they're done.

We haven't heard anything from them, which is good, since the only reason we would expect them to have called by now is if there's a problem. My guess is that he'll probably be in there for another hour or more.

Tuesday, January 3, 2012

I think we're on

Magnus's cath is scheduled for tomorrow. Last week, I was a bit worried that we'd have to reschedule, because he came down with a cold early in the week, but he seems to be fine now. Apparently we are scheduled to be first case, which is amazing; they do two cases a day in the cath lab, with the first starting around 8 a.m. and the second scheduled to start around noon. However, the last two times we've been second case and the first case has run late and we got started several hours late. Generally starting on time is one of the big advantages of being first case, but the real advantage is the time frame, since Magnus has to be fasted for 6 hours before he starts. Obviously, fasting from 2 a.m.–8 a.m. is a lot more pleasant than fasting from 6 a.m.– noon or several hours later. Also, there is a theoretical possibility that we could avoid an overnight stay being first case, although I'm not counting on that. Actually, I'm not counting on any of this until it actually happens because I know that today we could well get a call saying that Magnus has been bumped to second case or perhaps rescheduled altogether if there is an emergency. Hospital stays are charmingly like air travel in that way.

But hopefully all will go as planned, they will find no problems, and I can focus all my worry on the fact that last night our dishwasher started leaking into one of our downstairs fire alarms, causing it to repeatedly go off (miraculously, M slept right through it).