We're home!

Actually, we got home yesterday afternoon around 1 p.m. I had thought we were going to get out of the hospital on Monday, but then on Monday morning, they came and talked to me about some of his lab results. His hemoglobin was low, so they wanted to give him a blood transfusion. They also said that they had to adjust his lasix dose since he is now consuming so much more fluid.

I wasn't crazy about him getting a blood transfusion, but I'd noticed that his oxygen saturations were a little low over the weekend, which could be a result of the low hemoglobin. I also wasn't sure when they had drawn these labs...was it when he still had the really bad edema from the IV fluids? I couldn't remember. Being in the hospital really messes with your brain. Every day is the same, so it's hard to keep track of time, plus sleep and sensory deprivation, along with boredom, conspire to rob you of your mental acuity. I was a little confused about what was going on, but was willing to do whatever the doctors wanted to get out of there. Iggy wasn't there on Monday morning, because he'd been up at a wedding in Sonoma County on Sunday evening. Originally, we were all supposed to go to the wedding, but Magnus and I had to cancel due to his hospitalization.

But then a couple of hours later, the doctor came back and said that he had changed his mind, and that Magnus didn't need the blood transfusion. I was relieved, but also felt guilty for not arguing more about the blood transfusion in the first place.

Anyway, in parallel with the confusion about when we were going to get out of the hospital and what we needed to do to make that happen was the renewed potential that we might get to go on our trip after all. As you may recall, we were scheduled to go on a 2 week trip to the East Coast leaving this Saturday, the 31st. When we had our original consult with the pediatric surgeon, she said it would not be a good idea to travel so soon after surgery. But on Sunday evening, our regular pediatrician stopped by to see Magnus, and remarked on how well his recovery had gone, and said "and you still get to go on your trip!" "Do we?" I asked. Everything seemed to be going fine, but I'd assumed that cancelling the trip altogether was our only option.

The next day when I met with the surgery nurse practitioner I asked her about traveling, and she just shrugged her shoulders. "Why not?" she said, "if anything happens, they have hospitals on the East Coast."

But we still hadn't gotten clearance from the cardiology team. When the cardiology fellow came around to talk to me, I asked him and he was noncommittal. "Let's talk about it tomorrow," he said.

That night, Iggy stayed over at the hospital while I slept at home, and that night, our regular cardiologist came around to check on Magnus. Iggy asked her about traveling, and she indicated that she thought it might be OK, but wanted us to go for a shorter trip, and to skip our plans to visit Iggy's grandfather, who lives on a small island in Maine that is accessible only by boat.

But then the next morning, when the cardiology fellow came to talk to us, they told us that the team's recommendation was no travel for a month! I told him that our regular cardiologist had indicated that she thought it was probably OK, and in the end, she actually ended up coming in and talking to them in person, and so as it stands, we are tentatively planning to go on a shortened version of our trip next week, as long as Magnus continues to do fine with his tube and a cardiology appointment we have on Monday goes OK. I really, really, really hope it does, not just because we would love to go on this trip, but also because at this point my parents have already spent a fortune on booking and rebooking air travel, and I don't want it to be for naught!

So anyway, we got out of the hospital yesterday with probable authorization to go on our trip. The biggest challenge since then has been adjusting to life at home with the tube and figuring out how the pump for his overnight feedings works. There are definitely pluses and minuses to life with a tube. In the minus category: Magnus is still clearly not quite adjusted to his new feeding volumes, so he fusses quite a bit at mealtimes, and had one big puke last night. For the moment, we are sticking with the feeding regimen we were assigned in the hospital. I know I said it was stupid, but there is something to be said for trying to get Magnus on a more normal feeding schedule (i.e. eating 5 times a day instead of a dozen or more times), and I'm hoping maybe this will help "train" his stomach. I don't think we'll do it forever, though, especially since we don't plan on asking his nanny to do tube feeding with him. There's also the fact that we have all this new equipment to deal with/worry about, although I suspect that as we get more accustomed to it, it won't be that big a deal.

In the plus category: the obvious answer is that we don't have to worry about feeding him enough calories every day, but to me, really, the biggest advantage is that we don't have to give him his meds by mouth! Before the tube, the worst part of my day, no matter how bad a day, was always the two times a day I would give Magnus his Prevacid. I haven't tasted it, but it smells awful, and I had to give him a large volume of it. Now I can just squirt it in the tube, with no tears or screaming! The other big advantage of the tube is that with continuous overnight feedings, last night, Magnus only woke up once during the night, at around 3 a.m. To say that this had never happened before is a huge understatement! Before, on a good night, Magnus would sleep 3 hours at a stretch. On a bad night, it could be as little as 45 minutes all night long. We also finally moved Magnus into his own bedroom, and out of ours. Because he woke up so frequently before, it made more sense for him to sleep in a co-sleeper attached to our bed, but our bedroom is tiny, and the co-sleeper made it a tight squeeze, and there was no way we could also fit his feeding pump etc. in there, too. I was worried that I would miss sleeping next to him, but to be honest, it's nice to have all that space back in our bedroom. I can finally open the drawers on my nightstand for the first time in months! Not to mention that the possibility of one day sleeping through the night, formerly a crazy fantasy, now seems like it might actually happen soon.

Day 4

And things are moving along pretty well. He's still a tiny bit puffy, but looks much better than yesterday. And the really good news is that he's been tolerating all his tube feedings very well, and hasn't thrown up or anything at all. He's occasionally gotten a bit fussy during feedings, but I think that's mostly because the dietician has him on a really stupid feeding schedule.

Ordinarily we feed Magnus many small meals; he usually eats every 1 to 2 hours during the day and consumes 1-3 ounces at each feeding. This is how he chooses to eat, and I think it's because when he has bigger meals, it aggravates his reflux. We told the dietician that our plan for when we go home is to feed him ad libitum from the bottle during the day, and then do continuous tube feeding at night to bring him up to his goal volume for the day. I guess the dietician just completely threw this plan out the window, because what she ordered for him was 4 ounce feedings every 3 hours; he takes whatever he will from the bottle, and then he gets the rest as a bolus through the tube. This sounded completely nonsensical to me, because why would he tolerate such large feedings through the tube when he won't tolerate them by mouth? Luckily, though, thanks to the fact that everything is always running behind in the hospital, in practice, he ends up getting all his tube feedings late, so it ends up getting spread out reasonably well. Anyway, I don't really care what we do here as long as he's not too miserable and we can get out of here soon, and it seems that we are well on track to do so.

His nighttime feeding plan was equally ridiculous. The idea was that his last bolus feed during the daytime would be at 5 p.m., and then he would start continuous feeding at a very slow rate, 5ccs (about 1/6 of an ounce) per hour. Of course that meant that he went for 3 hours with no food, and then got hardly anything through the tube, so of course he got hungry and fussed. Basically, after stuffing him full of food all day, they were starving him at night! So I gave him a bottle and he went to sleep. Luckily, the nurses have been pretty cool about our subversion of the plan.

Anyway, like I said, despite the stupid feeding plans, Magnus has been tolerating all his feeding well, and has been gaining weight. Fingers crossed that this continues!

Day 3

As I write this, Magnus is getting his first feeding of milk through his G tube. They started using the tube this morning, but have previously only given him pedialyte through it. They've also been letting him drink milk by mouth today, which seems to have improved his mood significantly, although he's still not back to his usual happy self.

Yesterday was a pretty rough day. He was mostly asleep, but when he did wake up, he screamed inconsolably. It took a long time for them to get orders from the doctors for him to get any pain medication. First they gave him oral morphine, which didn't seem to do anything for him, and then they decided to give him IV morphine, at which point they discovered that his IV had infiltrated, and his poor left arm was swollen up like a balloon. However, once they got the bad IV out he was immediately much more comfortable and fell asleep...so deeply asleep that he barely stirred when they put in his new IV!

Since he wasn't allowed to eat yesterday, they continued to give him IV fluids, but I noticed that he hadn't been peeing much. This made them worried that he was dehydrated, so they tried giving him more fluids, but he still didn't pee...he just got all swollen and bloated. The bloating got worse overnight, and I spoke about it with all the medical personnel I encountered, but nobody really seemed to take it seriously until this morning, when our regular cardiologist stopped by. She got the team to order him some diuretics, and also told us to prop him up in bed, since most of the swelling was in his face and neck. Nobody knows why he got so swollen, but they said maybe from the IV fluids. Since then, they've given him doses of IV lasix, and he's looking a lot better, but still much puffier than normal. So hey, at least now he looks fat!

I stayed over at the hospital with him last night, and I actually got a pretty good amount of sleep. Magnus slept almost the whole night through, thanks to my asking the nurses to give him morphine every 4 hours. I just wanted him to be comfortable and rest, and also didn't want to have to worry about him pulling anything out while I was asleep. I am especially worried about him pulling out his G tube, which is possible. When we go home, we'll be able to keep the tube covered up and out of temptation's way by dressing him in onesies and one-piece outfits, but here in the hospital, he just wears a diaper, and the nurses like everything to be out in the open where they can see it (which makes sense...part of the reason why we didn't realize for a while that his old IV had infiltrated was because they had covered it up with a lot of tape and a "spiderweb" bandage to prevent him from messing with it or pulling it out).

So he seems to be doing better now. He hasn't had any pain medication since 5 a.m., and while he hasn't seemed very happy, he hasn't been too fussy, either. I think getting to eat again has helped a lot. I also suspect that he'll be a lot more comfortable once we finally get all the excess fluid off him. I myself had terrible edema after giving birth thanks to my preeclampsia, so I know how uncomfortable it is.

Out of surgery

We just got the call from the surgeon that everything went about as well as could be hoped. They were able to do the surgery laparoscopically (which basically just means he won't have another big scar, but we were relieved about that), and they were able to place a button type G tube right away (sometimes they have to place a different type of tube and then switch it out for a button later). We're still in the waiting room now, but they said we'll get to go up and see him in 5-10 minutes (which means 10-20 minutes or more in hospital time).

Well, we're here!

We checked Magnus into the hospital at around 1 p.m. We are back in our old cardiac unit, and they managed to get Magnus one of the best rooms in here--we only have one roommate instead of two. I feel kind of sorry for that roommate, though, who looks to be a boy around 9 years old. I think he's getting out of here in a day or so, though.

Not much has happened so far other than chatting with the nurses and with our pediatrician, who stopped by. They don't even have Magnus hooked up to the monitors or anything, but they're about to draw blood and try to simultaneously put an IV in him. If they can't get the IV in with the same stick as the blood draw, they're going to put the IV in tonight. The whole reason why we're here in the hospital a day early is so he can get IV fluids while he's fasted overnight to make sure he doesn't get dehydrated.

After we got here, Magnus napped for a while, but of course then one of the fellows came to look at him and woke him up by prodding him with a stethoscope. Now he's just hanging out and playing with the many toys we brought from home. Yet again, I'm very thankful he's too young to understand what comes next.

It's on

Needless to say, the past couple of days have been pretty stressful for Iggy and me. Not only were we not sure what we wanted to do about Magnus's surgery, I was very worried that he and I would have trouble agreeing about what we wanted to do. The more Iggy thought about the surgery, the more concerned he became about it, and he started talking about trying NG feeds again.

We hadn't come to any resolution, and then yesterday, Magnus's cardiologist e-mailed me and said she wanted to talk to us. We agreed to talk to her on the phone this morning, and resolved to make a decision after that.

If you are a regular reader here, you have probably learned by now that I am not the type to blindly follow the advice of any medical practitioner. But we have something pretty close to complete faith in Magnus's cardiologist. She has always tried to work with us when we wanted to do something differently, and we know that she cares about him deeply and has his best interests at heart.

She was quite blunt with us. She said that putting off Magnus's surgery for another few weeks would be very dangerous, and that it would make the surgery sufficiently risky that there would be a real chance that he could die. And well, after she said that, it was pretty obvious what we had to do. We also discussed the possibility of revisiting doing the surgery endoscopically, and she said that she didn't think it was a good idea in general for cardiac patients, and especially in his case.

We check in to the hospital on Wednesday, and if all goes according to plan, we should be there about a week.

So, this means that we have to cancel our vacation, which is a huge disappointment for us. My parents rented a house at the Jersey Shore, and the plan was that we'd spend the first week there with my parents, my sisters and their husbands, and my new nephew I haven't met, as well as my aunt and uncle and several of my cousins, none of whom has met Magnus. Then we were going to drive up to Massachusetts and see Iggy's side of the family, including Iggy's brother, who still hasn't met Magnus, and a bunch of friends. And finally, we would drive up to Maine with Iggy's mom for Magnus to meet his great-grandfather.

We probably can make the trip back East as soon as Magnus is healthy enough to travel, but it won't be the same. There will be no week at the shore with my whole immediate family around. And we while everyone else is there without us, we will be at home recovering from yet another surgery, or perhaps even still in the hospital (that would make for maximum self-pity potential, wouldn't it?).

So yeah, we're pretty hugely bummed out. And yet, after we'd made the decision, we both felt oddly relieved. We'll get through the surgery, and then we'll finally be able to fatten him up, and won't have to worry every day about how much he is eating, and we'll go back East later, and even though it won't be the same, Magnus will still get to meet everyone.

p.s. Oh yeah, and then we gave him a bath and weighed him this evening, and the little stinker had gone and gained 80 grams in the last 2 days! Unfortunately, it's too little, too late.

Surgical Consult

Yesterday afternoon we had our consult with the surgeon who will place Magnus's G tube. I'd have to say it did not go very well.

We found out about the appointment through a voice mail message last week, saying that we were to come in at 2:30 on July 14th. They did not leave a phone number, and didn't tell us if a surgery date had been scheduled, so that was our number one question going into the appointment.

So our appointment was at 2:30, and they told us to arrive at 2:15. Since we're not suckers, we showed up and signed in at 2:25. And waited. We weren't called into a room until 4 p.m. A nurse practitioner greeted us, and we asked her if she knew if Magnus's surgery had been scheduled. "I'll find out," she said. She disappeared into the hallway and we never saw her again.

Finally, the surgeon came in, along with someone else who never introduced herself. We asked her if the surgery had been scheduled, and she told us that we had been scheduled for next Thursday, July 22, at 7:30 a.m. "Are you sure they didn't tell you?" she asked, "because I find that very strange." I assured her that the surgery date had not merely slipped our minds.

We've been planning to leave for a big family vacation on the East Coast on July 31st, so that was the first thing we asked about. The surgeon said that Magnus was likely to be out of the hospital by then, if everything went smoothly, but that it would not be a good idea to travel with him so soon post-op, setting up problem number one: if we go ahead with Magnus's surgery as scheduled, we will have to cancel our vacation. It would be one thing if this were just a trip for fun, but this was going to be the big opportunity for Magnus to meet a bunch of his relatives. If we cancel, I don't know when we'd have a chance to do it again, probably not until next summer at the earliest. My sister had a baby in February, and I still haven't gotten to meet him, either.

When we mentioned this to the surgeon, she was very clear that she thought that waiting was a bad idea. However, she also made it clear that she didn't know anything about the particulars of Magnus's case, and that the urgency in scheduling this surgery was at the request of his cardiologist. When we met with his cardiologist last week, she did say that she hoped he could have the surgery before we left, but didn't seem quite so emphatic about the dangers of postponing it.

The next thing we talked about with the surgeon was Magnus's reflux. When we mentioned that reflux had been a major factor in his eating problems, she told us that if he had reflux, that he should undergo a fundoplication when he had the G tube inserted. I told her that I had major reservations about the fundoplication surgery, and that I didn't want to consign him to a lifetime of problems with gas and an inability to vomit. She stared at me for a moment, and then just said "well, that's my recommendation."

My next question was why he wasn't a candidate for the endoscopic surgery, and she said she didn't know, that someone else had made that determination. I asked her what kind of G tube he would be getting, and she said she didn't know, that it would depend on how things went in the O.R. She also said that the determination of whether the surgery could be done laparoscopically or not would be made in the O.R. Really, she wasn't able to tell us much of anything except that the date for his surgery had been set.

So now we are faced with the decision of whether or not to reschedule his surgery. Medically, of course, the answer is that he should have the surgery as soon as possible. But I'm not sure exactly how urgent the situation is. He has been doing pretty well with eating lately, and has been steadily gaining weight, albeit at a slower rate than we would like to see. And that could change at any time. His reflux is a moving target, and it seems like as soon as we find a combination of meds that work, they stop working. He's been malnourished for a long time now, will three more weeks really make a difference? I don't know. And if this surgery is so urgent, why has it taken more than a month to schedule it? Anyway, we have a big decision to make, and we need to do it soon.

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.