Waiting for the G tube

As you have no doubt intuited from the title of this post, we are still going through the process to get Magnus a G tube. First, we had to wait for insurance authorization to do the upper GI study, which finally happened this past Wednesday. Magnus had to drink a barium solution and then lie flat on a table while they took x-rays of his abdomen to determine if the G tube could be placed endoscopically or not. I was really dreading having to force him to drink barium, since he has emphatically rejected anything we try to put in his mouth that is not breastmilk. As it turned out, he actually did take a few swigs of the barium before deciding it was awful (maybe because he'd been fasted for several hours beforehand), and the worst part of the study was having to pin him down on the table so he would lie flat...he screamed and screamed and didn't want to be held down. At this point, I am pretty accustomed to having to do horrible things to Magnus, and I did what I usually do, which is to talk to him in a soothing voice and tell him over and over again that I am very, very sorry. This seemed to annoy the radiologist, who snapped at me that the procedure was not painful. Well, duh, I know that x-rays aren't painful, but it's still pretty unpleasant to pin your child down while he's screaming.

Luckily, it was over pretty fast...I think the whole thing took maybe 10 minutes.

We were hoping that the study would show that his anatomy was conducive to having his G tube placed endoscopically, which means a less invasive surgery and a shorter hospital stay. We found out on Friday that they determined based on his study that he was not a candidate for the endoscopic surgery, although they didn't tell us why. It could be because the placement of his stomach is unusual, or it may be because he has surgical scars in the area they'd want to go through. We have a consult with pediatric surgery this coming Wednesday, but no surgery date yet. I'm not sure how long of a hospital stay this will be...our cardiologist said about a week, but that sounds really long to me. Some kids spend less time in the hospital than that after open heart surgery, and this is far less invasive than that, even with having to do the more invasive procedure. Hopefully we'll get a better idea on Wednesday.

We've really been trying to push things forward as fast as possible, not just because he continues to not eat very well and not gain weight, but also because we've scheduled a 2-week trip to the East Coast leaving on July 31st. Magnus is finally going to get to meet a lot of his aunts, uncles, and cousins, as well as seeing more of his grandparents and other relatives he's already met. If we can't get this surgery scheduled soon, it's going to have to wait until mid-August, when we get back.

On Thursday of this week, Magnus had a cardiology appointment. His oxygen saturations were a little lower than they had been, which is probably just a fluke, but could potentially be one more thing to worry about. Oxygen saturation monitors tend to be a little temperamental, which is probably what was happening, but his cardiologist mentioned that it could be a result of collateral veins, which would be not a great thing. Luckily, he's going to be in the hospital for several days for this G tube surgery and hooked up to monitors all that time, so if there really is a problem with his saturations, it should become evident. Magnus's cardiologist also wanted to talk to us about the risks associated with the G tube surgery. The risks are all basically related to the anesthesia, and while he's never had problems before, it's always a possibility for something Very Bad to happen when you have general anesthesia, particularly when you're a baby with a serious heart defect. Iggy felt like she was telling us this to scold us for not trying harder to get the NG tube to work, and I suppose she probably was. It is still frustrating, for us, and probably also for his doctors, that something that feels like it should be so simple, getting a baby to eat, is so difficult that we're going to have to go through another surgery and another hospital stay, followed by months or maybe even years of dealing with feeding pumps and feeding tubes and various medical equipment. But we really have tried, and it just didn't work.

Anyway, Magnus has now woken up from the nap he was taking when I started writing this, so I'll have to leave it at that for now, but I'll try to write a little more later about our experiences with his reflux issues, which I think might be of use to other parents who have kids with feeding issues.

Assessment

This morning we took Magnus to be assessed by a doctor to see if he was eligible for a state program that provides therapies (physical, occupational, language, etc.) to babies with developmental delays.

This was actually the second stage of evaluation...last week a social worker came to our house to do what they called an "intake assessment." She'd confirmed what we suspected to be the case, which was that he was doing fine with everything except eating and his gross motor skills. And then today, the doctor he saw pretty much confirmed that assessment.

I suppose this is both good and bad. It's good to hear that given all the abuses his nervous system has been through (heart bypass, general anesthesia, chronically low oxygen saturations), he appears to either be on track or even advanced in his fine motor skills, language skills, social interaction and cognition, at least to the extent that these things can be assessed in a 7-month-old. The finding that he is delayed in his gross motor skills was not really bad news, since we already knew it, and we're glad that this qualifies him to get some extra help, although working another weekly appointment into our schedule is going to be a pain.

We are still waiting to hear back about where he will receive services, but we're hoping it will be at a particular center where they have an integrated therapy program that includes a feeding clinic. It's obvious to everyone that Magnus's gross motor skill delays are directly related to his feeding problems. He's too skinny, thus he has poor muscle tone, thus he's not strong enough to sit up or start to crawl. The eventual G tube placement should certainly help to bulk him up, but I definitely would love it for him also to have therapy that could possibly help him take more by mouth, since the goal is to try to get him off the tube as soon as possible.

Speaking of the G tube, progress there has been slow. Apparently, our insurance company has been dragging their feet in granting approval for the imaging study that needs to be done in order for the process to be initiated. In the meantime, Magnus has been eating pretty well for him, but only gaining weight at about half the rate we would like for him to achieve.

Basically, other than that, life has been pretty normal! Iggy's mom is in town visiting, so Magnus has been happy to have lots of grandma time. This weekend, we took him to a party at the beach, and while he seemed a little overwhelmed by all the people, he eventually got over it and made a few new friends.

So now we just have to wait to hear about the G tube and figure out how we're going to fit his therapy into our schedule. I guess we'll manage somehow!

Update

I'm totally exhausted right now, but we have heard from so many supportive friends and family in the past week since I wrote about our trials with NG feeding, I wanted to post a quick update, and to say that things have settled down a lot and that we're all doing OK!

On Monday, I e-mailed the GI doctor we'd seen last week to say that we wanted to go ahead with the G tube. She wrote me back and said that she would help us with that, and that the first stage in the process was to set up an imaging study to see if Magnus could have a G tube inserted endoscopically (this would depend on the location of his stomach within his ribcage and whether any of his surgical scars would interfere with endoscopic placement of the tube). That still hasn't been scheduled, but we're hoping this will happen early next week, and are hopeful that the surgery can happen in the next couple of weeks.

We still haven't met with the GI doctors about the G tube, but based on very helpful comments other parents left on this blog, I think that Magnus can be successful with the G tube without doing a fundoscopy.

Like I said earlier, things have been pretty normal this week. The Prevacid seems to be working better on Magnus's reflux than the Zantac was, and he has been eating relatively well. Unfortunately, it's not quite enough to get him where he needs to go. It's definitely been hard to give up on the idea of a child who can meet all his caloric needs "naturally," without the use of a tube. But what really drove home the need for a tube for me was when I sat down with a growth chart and discovered that even if Magnus gains an ounce every single day, which is a lot, nearly double the rate of weight gain that a normal baby would have at this age, it will take him four months to even get on the growth chart, which would put him in the 5th percentile for weight. The realization that even this modest goal was going to be wildly ambitious for us without being able to give supplemental feedings really made it kind of obvious that this is what we need to do, even though it will require another surgery and hospital stay, and will be some extra work to maintain.

Anyway, things are OK, we're OK, and we want to just get this over with quickly, and start fattening our boy up soon.

NG Nggggggh

It's been an eventful couple of days.

At Thursday's cardiology appointment, we requested a GI consult, and somehow were magically able to get an appointment the following day. Our GI appointment was mostly pretty uneventful. They approved the cardiology plan to supplement his feedings via NG, and gave him a prescription for Prevacid, since it seems clear that the Zantac isn't really working for Magnus's reflux.

We had decided to wait until Friday night to insert Magnus's NG tube, partly because Iggy had to work late Thursday night, and also because we figured it might be best to try out his new nighttime NG feeds on a night when I didn't have to go to work the next day.

So when I got home from work Friday, we got down to business. We swaddled him, we prepared all the bandages to keep his tube in place, we got out the tube, and I took a deep breath and started to insert it.

Inserting an NG tube is really pretty straightforward. You stick the tube in one nostril, and then just keep pushing it until it gets down to the stomach. Except the first time, it didn't work. The tube just got all bunched up in his throat, so I pulled it out and tried again.

The second time, the tube went all the way in, but then he immediately vomited it back up. Ditto for the third time. By then, all three of us had had enough. Magnus was screaming his head off, and Iggy and I were about ready to cry, as well. I sent a panicky e-mail to our cardiologist, and decided that we could bring him to the urgent care clinic the next day to have a nurse insert the tube. But it was pretty unnerving that we would be unable to reinsert it.

Our cardiologist e-mailed me right back and was very reassuring. Take him to urgent care tomorrow, she said, and you guys can get more training next week. It was exactly what I needed to hear...a little pat on the head.

So this morning, I brought Magnus in to urgent care to have the tube inserted. Iggy had to go to work, so I was by myself. With great struggle, the nurse and I managed to get the tube inserted, but she had to call another nurse to help check placement, and Magnus got so upset during the insertion that he screamed until he turned blue, and then vomited up a bunch of bile afterwards. I think even the nurse was a little bit traumatized. She suggested that we stick around for a little while to make sure he was tolerating the tube, and we did. He seemed to be OK, although not very happy, so after half an hour or so, we went home.

I think he was mostly asleep on the drive home, but as we pulled into the garage, he started to fuss. As I gathered up our things and tried to comfort him, I accidentally dumped the contents of my purse on the garage floor, and somehow, that was the thing that sent me over the edge. Magnus was crying, and I was crying, and I just felt completely devastated, knowing that Magnus was going to have to live with this horrible tube that was nightmarish to insert, and then probably uncomfortable for him all the time. Even as a 6-week-old, he managed to pull his tube out on a regular basis, and I imagined that surely things couldn't be any better now. Since we couldn't do it ourselves anymore, how often was I going to have to take him to the doctor's to have the tube re-inserted? Was I going to be driving him to the clinic several times a week, skipping out on work, and having to shell out a $10 co-pay, plus $6 for parking, in order to have this incredibly horrible thing done to him?

I managed to pull it together and bring him inside. I put him down on his sheepskin to play, and he actually cracked a smile and seemed to be doing OK. I left him there because I was way overdue to pump breastmilk, so I sat down to do that. About 10 minutes into the process, I noticed that Magnus was fussing a little bit. His back was turned to me, so I couldn't see what was going on, so I just talked to him and hoped he would settle down, but he didn't. I stopped pumping and went over to check on him. And wouldn't you know, he had pulled his NG tube entirely out. The outside part was still taped to his face, but the part that was supposed to be in his stomach was just flapping around freely.

At this point, it became clear to me that an NG tube just wasn't going to work for us. We had gone through so much to get this tube inserted, and then it didn't even last 2 hours! There's really no way you can prevent someone from pulling out an NG tube, short of taping over their entire nostril, preventing them from breathing. Or keeping them in a straightjacket. Neither of these options seems particularly desirable.

I sent an e-mail to the cardiologist saying that the NG tube was just NOT working out, and that we would have to move on to other options next week.

What other options do we have? Well, it seems that we really only have one. Magnus could have a permanent feeding tube surgically placed in his abdomen, a G tube. While this involves another surgery, it can be done endoscopically, and typically only requires patients to stay in the hospital for a day or so.

The issue there is that a G tube can make reflux worse. Since we think that reflux is a big part of the reason why he's not eating enough now, that's a big problem. For this reason, GI docs often recommend that babies with reflux who have G tubes placed also undergo another simultaneous procedure called a Nissen fundoplication. This typically cures reflux, but comes with its own set of possible complications, including problems with gas, digestive problems, and most alarmingly to me, it makes it impossible to vomit.

So basically, while the G tube sounds very attractive to me, I'm scared that he won't tolerate it without the Nissen fundoplication, and the Nissen, quite frankly, terrifies me.

I don't really know what to do. It feels like we have no good options...the NG just isn't working, the G tube seems like it would create as many problems for him as it would solve, and the status quo of limping along with weight gain certainly isn't satisfactory either. So for now, I'm drinking a big glass of wine and saying to myself that we'll figure it out next week.

Back on the tube

Well, it's official, Magnus is going to be an NG tuber again, at least for a couple of months.

Even though he's started to pick up his eating, it's not enough to get him caught up on his growth. The dietician we met with wanted us to have him on NG feeds all day long, but we talked her down to letting him eat by mouth during the day and then making up what he needs to get to his goal volume for the day at night.

Hopefully this means we won't have to worry about his growth any more, but I'm very nervous about how he's going to do with the tube now that he is so good at grabbing and pulling on things! Hopefully he'll get used to it and leave it alone.

Feeding issues

Magnus had a cardiology appointment yesterday morning. I guess that was the longest (6 weeks!) he's ever gone without seeing a cardiologist!

We had been worried about this appointment, mostly because of Magnus's weight. After his Glenn surgery, his eating and weight gain dramatically improved. But all of that seemed to come to a screeching halt at the beginning of May. All of a sudden, he didn't want to eat anymore, he was fussy all the time, and his weight gain leveled off. We attributed the fussiness to teething, although he still doesn't have any teeth.

And then, two and a half weeks ago, he came down with some sort of virus. His symptoms were oddly diverse: conjunctivitis, diarrhea, and a cough, but when I took him to see the doctor, she said it was probably all caused by the same virus. He never got really sick, but his eating got even worse, and he actually started losing weight. He finished off the month of May lighter than he'd been when it started, and since he's been growing, he just looks so terrifyingly skinny.

So, we were nervous about going to see the cardiologist. Nervous, because we knew she was going to want us to put his NG tube back in, but I was also nervous that his weight loss and fussiness could be attributed to a problem with his heart. Luckily, that latter possibility was not the case, and cardiac-wise he is doing just fine. That leaves us with the eating.

What would be so terrible about putting the feeding tube back in? Well first, even when he was a tiny baby, he was a champion at pulling his tube out. Now that he's stronger and has better fine motor control, I shudder to think how often we'd have to replace that tube. Second, the tube seems to be uncomfortable for him. He would often gag on it, and he would frequently just scream the whole time we were using it to feed him. This made feeding an extremely slow process, which leads me to problem number three, which is that the tube is inconvenient. It's a bunch of extra equipment to worry about and in his case is much more time consuming than feeding by mouth. And fourth, he'd have to go around with a tube on his face! This might sound trivial, but I guess one of my coping mechanisms in all this has been to strive to live our lives as normally as possible. A baby with a tube on his face is NOT NORMAL and is visible to the world as a SICK BABY.

But really, my biggest frustration with all this is that a tube won't really do anything to fix his feeding issues, it will merely circumvent them. As things are now, Magnus typically only eats one or two ounces at a time, and then he turns his head away or pushes away the bottle. If you try to get him to eat more than that, he screams. I don't know if it's from reflux or gas, or just him feeling full, but it feels wrong to me for the solution to be to force-feed him through a tube.

But I don't have an alternative solution. We just started adding probiotics to his food on Sunday evening in the hopes that it would improve his diarrhea (which has now been ongoing for 17 days) and maybe generally improve his bowel function and appetite. He then ate fantastically on Monday morning, but dropped off during the afternoon and evening and ended up having another meh day of eating.

These feeding issues are so frustrating...all last month, I've felt like I was fighting with him all day to get him to eat, and then because he eats such small meals, he usually wakes up every 2 hours during the night. And then lately, he won't even eat at night, but we feel like we have to get up with him to at least try.

Anyway, if Magnus doesn't turn things around right away, we have to go back to the cardiologist's next Thursday and he'll be back on the tube. I'm going to keep trying with the probiotics, but I'm not terribly optimistic. One positive thing, though, was that Magnus was actually in a really good mood all day yesterday, despite the fact that we had a very long doctor's appointment that included an echocardiogram, an EKG, and a blood draw. Between the "teething" and being sick, it had been a long time since he'd had such a cheerful day, so maybe those probiotics are doing something after all.

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!