I’m trying to stay on track and keep up with posting at least every other week, but we’ll have to see. This month has been a bit rough, with James being in the hospital those first two weeks of the month, and running back and forth between work, the hospital, and home. If you read through the hospital post, we still don’t have any answers as to what is going on with his digestive system.

It’s been a bit aggravating, but we’re trying to just take one day at a time. We had been slowly increasing his feeds since he came home from the hospital and trying to get him back to his normal amount of food/calories without pushing him too much. We thought we were on the right path, but it does look like we were pushing him too fast and had a little bit of a setback and ended up taking him back to the ER Sunday morning. More on that later, but before we get to that, I want to go over the other things that have gone on in James’ life over the past week and a half since he came home from his two-week hospital stay.

There really hasn’t been much going on since James got home from the hospital on the 14th. As I previously stated, our main goal was to slowly increase his feeds and work him back to his normal calorie intake. Over those two weeks in the hospital, they were unable to find any reason for his GI/digestion issues. They did not see any blockages anywhere in the digestive tract. The only thing that they found was that his digestive system was moving slower than it should but couldn’t give us a reason why it was happening.

The only real suggestion they came up with was to run James’ feeds at a lower amount and at a slower rate. They had tried this while he was in the hospital, and he seemed to be tolerating his feeds better, so we continued this at home. This really messed up our schedule, though. When you have a child that is tube fed, it’s hard enough to work things around feeding schedules. But when you extend those feeding times, it makes getting even the simplest things done even harder.

Giving James a bath is a good example of one of those simple things that was made a little bit harder to do with this new feeding schedule. His normal routine is to get up in the morning, get a feed over an hour from 6 am to 7 am, have two hours to relax in his chair to digest his food, go on his belly at 9 am to drain his secretions, and then get another feed at 10 am.

On Sundays James gets a quick bath at the beginning of that 9 am – 10 am belly time slot. That was the normal routine. We were used that routine. But when you suddenly have to change the feeding time from one hour to three hours, it really messes you up. Especially when you’re a bit sleep deprived. Your body just automatically wants to do something because it is in that routine of doing it. Last Sunday Stacy was starting to get James’ bath ready at 9 am because that was the routine her body was used to. It wasn’t until she went to pickup James to take him to the bath that she remembered he was on a new feeding schedule and had to wait another two hours to give him his bath.

When James left the hospital on the 14th he was only getting 450 calories a day through his feeds, which is well below his normal caloric intake. By Tuesday of last week, just under a week after getting out of the hospital, we had him up to 800 calories a day, and also had reduced the time of the feed down to two hours. He seemed to be handling it okay, but we had a setback this weekend.

Saturday night he took a bit of a turn. We thought that it was just a minor bump in the road and hoped he would be better in the morning. He progressively got worse through the night, and we ended up taking him back to the ER Sunday morning at around 6:15.

They took some x-rays and some blood. The X-ray showed that his digestive tract was a little bit backed up again. After giving him some IV fluids they sent us back home and recommended that we slow down his feeds again. I guess we were increasing his feeds and shortening the feeding time faster than his body could handle. He has been doing much better the past couple of days. Hopefully this won’t be a recurring issue this year.

Other Happenings in James’ Life

Okay, so this isn’t really James related, but Stacy and I were able to have a date night on Sunday the 18th. After spending two weeks in the hospital with James, she really needed a break from him. Don’t get me wrong, she loves him. I do to. He is our entire world. But a break for a few hours is a good mental reset.

James’ regular babysitter was available, and James had been doing well so we took the opportunity to go out and grab some dinner. The date didn’t totally go according to plan, though. The plan was to go to a local sports bar that had good food and pizza and just have a nice dinner. My car had other ideas, though. This happened on another one of our date nights, too, so I’m starting to think my car is jealous of Stacy. There is a trigger switch in the doors that tells the car that the doors are closed and to turn off the interior lights. Sometimes the switch in one of the doors doesn’t trigger and the interior lights stay on and run down the battery.

The first time this happened, the battery died, and we had to call AAA for a jump. Ever since then, I check to make sure the interior lights go off whenever I leave the car. I have learned since that first time that the faulty trigger switch is in the passenger door which explains why the issue only happens on date nights. Sometimes we are able to get the switch to trigger by opening and closing (sometimes slamming) the passenger door. This time it didn’t work, so we changed our plans a bit. Instead of going in to eat, we placed an order for pickup and ate it in the car, which was actually probably better. It was quieter and we could actually have a conversation and not have to shout above the noise.

When we got home, James was totally passed out. We hated to disrupt his sleep to take him to bed, but we had to. Sorry buddy. If you notice, this is one of the rare times where his eyes are closed. He usually keeps his eyes open, even when he’s sleeping.

James went back to school last Tuesday and even though we had his feeds down to two hours, this new feeding schedule was still a bit of a burden. I know, it’s all about James. We need to do what’s best for him, and not us. I feel bad for Stacy because she’s the one that handles the morning routine. Since James gets his first feed before he goes to school, she had to adjust her morning schedule a little bit. She set her alarm for 4:15 am, got up, gave him his usual percussion vest treatment, and fed him at 5 am so they could be out the door for school at 8:20 am. While James was eating, Stacy got a workout in, took a shower, and ate breakfast. I don’t know how she did it, but she did it. Talk about a super mom!

James has been using a Nap Nanny since he was a baby. There was a recall on them a few years back because a few kids had died due to improper use. I believe the company that made them ended up going out of business because of that recall and the lawsuits that were filed because of those deaths. We ended up keeping ours because it was perfect for James and because he is not mobile, there would be no way that he would hurt himself while using it.

James was starting to outgrow the Nap Nanny, so we were looking for something similar that was a little bit bigger. Unfortunately, we were unable to find anything. Then we found a guy that was able to make James an almost identical chair in a larger size. The best part? He didn’t even charge us for it. We offered, but he refused. Awesome guy! Here is James in his new chair with the original Nap Nanny in front:

I think that’s all I’ve got for now. We do want to thank everyone that has been there for us and continue to be there for us. It’s been a bit of a rough year, but just getting a simple message saying that you’re thinking of us or asking if there is anything you can do means more to us than you will ever know. So, thank you.