There and Back Again: A Primary Children's Story

As mentioned in the previous post, we made a trip to Primary Children’s last Monday. Bryce had a check-up with his dietitian and one of his neurologist to see how the Ketogenic diet is treating him. I know I’ve said this before, but Jus and I are pleased with the results so far. He has been more alert and we have seen a slight decrease in his spasms. However, there hasn’t been much improvement since we made some adjustments two months ago. In fact, some seizures are getting worse.

His dietitian and neurologist were hoping the adjustments helped more than they did. As we discussed Bryce’s seizures, we mentioned that his ability to drink has really gone downhill (maybe it’s because we’ve been paying a lot more attention since we learned he aspirates?). As a result he has been dehydrated. Believe me, we have tried like crazy to get enough fluids in him, but it wasn’t working. So, naturally, Bryce has also been battling the side-effects of dehydration, such as constipation (yep, it’s stuck), increased possibility of kidney stones (thankfully we have been able to avoid those), and increased seizures.

Lovely day at the park!

 We also mentioned that we have decided to go ahead and get Bryce a feeding tube (a very difficult decision, but will share more on that later). Once his doctor and dietitian heard everything we said, it was decided we should make NO changes to the diet until we can get his feeding under control. Our hope now is that his seizures will decrease once we can keep him hydrated and get ALL five meals a day into him.

After the appointment we wanted to enjoy the beautiful weather, so we went to a park before we made the long drive back home. As luck would have it, we were the only ones there! We taught Bryce how much fun swinging is! He wasn’t too sure about it, but he never fussed. We also taught him how fun it is to climb trees! We weren’t able to get too high though, I have yet to figure out how to climb a tree with no hands. It was a wonderful afternoon!

On Tuesday, Bryce woke up as sick as could be! All he wanted to do was snuggle (I may have neglected my house work while I snuggled with him for a week). He slept pretty much all day, had a slight fever and nasty cough, was VERY congested, and when he breathed it sounded like there might be fluid in his lungs. Jus and I were worried it was pneumonia. We had an appointment with his pediatrician the following day, so we tried not to worry too much (quite a challenge for me) and did everything we could to help Bryce feel better.

The next morning we headed to Bryce’s appointment. First we talked with the pediatrician about getting Bryce a feeding tube (the original reason for the appointment). Then we had him look Bryce over. He was also worried it might be pneumonia. He sent us to the pediatric unit at the hospital to get an NG (nasogastric) feeding tube put in and have a chest x-ray done (to check for pneumonia and placement of the NG tube).

Sleeping after getting his NG tube

Oh my, getting the NG tube was HORRIBLE! Bryce cried and fought as hard as his sick, tired little body could. Honestly, I don’t blame him for fighting so hard. Having something shoved up your nose, down your throat and into your stomach can’t be a pleasant experience. Once it was in, Bryce had the x-rays done. Good news, no pneumonia (yay!) and the tube was in his stomach, not his lungs! We were finally able to feed him. Since he got sick, he REFUSED to eat anything (he had nothing to eat or drink for 36 hours, scary huh?). The NG tube has been a blessing! We have been able to keep Bryce hydrated and fed while he slept off his illness (he slept pretty much from Tuesday to Sunday).

Thankfully by Monday Bryce was starting to feel better, and he continued to improve throughout the week (good thing too, we had another appointment at Primary’s). On Thursday we headed back up to Primary’s to meet with a surgeon. He explained the procedure for getting a G-tube (gastrostomy tube, a feeding tube that’s inserted directly into the stomach). I am excited and nervous for the surgery. Excited because it won’t be as irritating to Bryce as the NG tube, but nervous because it is a surgery (I am grateful that it is a fairly simple operation that should only take an hour). Bryce will be getting his G-tube in six weeks. During this time he cannot get sick, so Jus and I have become germophobes.

Bruce, McKenzie and Rohan

After the appointment we had the opportunity to spend a few days with our great friends, Bruce, McKenzie and Rohan! We always have a blast with them! Bruce recently got a Hobie Mirage sail boat, so on Friday the men tested it out. McKenzie and I dropped them off at a lake. Justin and Bruce were carrying the boat down the ramp into the water when Jus found out just how much moss was on the ramp. All at once his feet where above his head and he was on his back in the water! He went down so quickly I thought he must be hurt. I jumped out of the car and ran over to see if he was alright. He was a little scraped up, but after further examination I believe it was mainly his pride that took a hit. He was a trooper though, got back up and finished getting the boat into the water and headed out.

The plan was to meet them at a park on the other side of the lake and have a picnic. Unfortunately, things don’t always go as planned. Turns out the lake they were boating on and the lake by the park are two separate lakes! Neither one of the men had their phones, so there was no way to contact us. Bruce ended up leaving Jus with the boat, then walked around until he found us. McKenzie had to pick them up in the same spot we dropped them off and we went back to their house to have our picnic. This was a little bit of a bummer, for Bryce was just starting to enjoy himself under the trees, looking up at the light though the leaves and listening to the ducks and Rohan quack. Seeing Bryce’s eyes light up as he takes everything in is a beautiful experience to be a part of.

Saturday’s plans worked out a little better. We decided to go to some free aquariums (free because they are located in stores. We started with Scheels. The aquarium there consists of three large pillars and two archways (so you could walk under it). It was AWESOME! Bryce loved being under the archways and watching the light reflecting off the water. Rohan loved looking at all the colorful fish! Then we went to Cabela’s. Their fish are HUGE! Rohan would get so excited each time they swam past him! He is such a cutie! Then it was time to feed Bryce. McKenzie and I found some really comfy chairs to sit in while I fed him. Justin, Bruce and Rohan went and did their own thing while they waited. Turns out they spent their time chasing Rohan through the clothing section. Silly boy has SO MUCH ENERGY!

Rohan is a hoot!

We had such a wonderful weekend and were sad to leave. Thanks Bruce and McKenzie for the fun memories, and for letting us stay with you!