Hellobee

Hello everyone! It’s been almost two years since I last checked in with the hive! For those who are new (or would like a refresher) – I have two boys, now 3.5 (D) & 5.5 (K). D had a rocky medical journey (detailed in great length in the D’s Journey series) and still uses a feeding tube. As he has grown, our ways of dealing with his GI issues have changed a lot, so I thought I would share an update!

Right now, D only uses the tube because he has short gut syndrome. When he first got the G tube (at 6 weeks old), it was because he couldn’t safely eat without getting food in his lungs. Right now, he needs the extra calories and hydration because his body (specifically, his intestines) tends to waste some of it. Because of this, when he was younger, he would have diarrhea multiple times a day, every day. Thankfully, the bigger he gets, the more manageable his poop situation is becoming! Since he was about 3, he has recognized when he has to poop and will tell me so I can take him to the potty – a huge improvement from before! We are still working on full potty training, but I’m giving us both a pass given his medical stuff. Anyways, enough poop talk…

When D was diagnosed with short gut syndrome (SGS), he was in the NICU recovering from the removal of part of his intestines. We stayed with the GI practice at that hospital until he was almost 3, but the better he got, the less satisfied I was. When we came for weekly clinic visits in the beginning, the entire team had a good handle on D’s situation and was able to closely fine tune the treatment plan to his needs. As he got better (able to handle more solid food, keeping good lab numbers, gaining weight and staying on his curve), our visits got spread out a lot, and it felt like we were falling through the cracks. I think because D was less of an emergency (and they were dealing with tons of very critical cases) the staff wouldn’t follow up with me as well, including about needed medication changes or tests. They would also continuously remind me that no matter how good he looked/acted, I had to always remember he was sick. I know they said this so I wouldn’t just totally ignore their nutrition advice, but still, that’s a rough thing to say to a parent of a thriving child!

Holding his own at an Indian buffet 

After two very unsatisfactory visits a few months apart, when the team seemed totally uninterested in working towards getting D less reliant on his feeding tube, we finally made the decision to seek a second opinion. My thought was that his history was actually preventing him from getting the best care – instead of the team being able to look at him with fresh eyes, and evaluate his current state, they were stuck thinking of how sick he was as an infant. D’s pediatrician referred us to a GI doctor who runs a much smaller SGS clinic at a different hospital.

Meeting the new doctor was like a breath of fresh air. She devoted a solid hour of her undivided attention to discussing D’s medical history and present needs, and we talked about my hopes for him. D has surpassed a lot of expectations – when he first had his brain injury, we were told he may never walk, talk, or eat. He’s weaned himself off of occupational therapy, physical therapy, nebulizer treatments, IV nutrition.. the list goes on. I explained some of this to her, that D is just a special kid who can do a lot more than people give him credit for, and my belief that we can get to a place where he won’t be as reliant on his feeding tube.

October 2013 / October 2016

The doctor was very encouraging, and said that he was in such great shape, we could certainly push him a little. Needless to say, we switched to the new clinic and couldn’t be happier. Since it’s a smaller clinic, they have more time to devote to us, including via email. I’ve been taking D to them every few months for almost a year now, and they have us on a plan to reduce the amount of formula and oral rehydration solution he gets through his tube, and increase what he eats by mouth – both quantity and variety.

We have no illusions that he won’t struggle with GI issues for the rest of his life, but in some cases, it can be managed through diet or supplements alone. We are hopeful that this new clinic will help us get him safely off of tube feedings. Although his tube is AMAZING and we will forever be grateful to that tiny piece of medical technology that has kept him alive and thriving, it’s a huge pain in a lot of ways. Because of the timing of his feeds overnight, I literally never get 8 hours of sleep a night, since I have to get up to turn it off (Mr T stays up late to set it up and we stagger so it’s not running while he’s falling asleep/waking up). Semi-regularly something happens and the bed gets fed for a few hours. A few months ago, D pulled his tube out at daycare and I ended up taking him to the ER – which is a story for another day!

All that said – D is making really great progress, and we’re hopeful it will continue. I’ll keep you all updated! For those special needs parents out there, don’t hesitate to go with your gut (get it?) and seek a second opinion if you think the practice you’re working with doesn’t have the same goals for your child that you do. It’s amazing what a fresh perspective can do, for everyone!