Cerebral Palsy, Food, Health, Memories, Our Son, Parenthood, Sebastian's Achievements, Sleep

G-Tube Chronicles: Recovery Part 2, Feeding and Side Effects

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When Sebastian was a baby he cried a lot and rarely slept during the day for longer than 20 minutes at a time. The only way I could take him out in the pram was if he was already asleep. He didn’t like the first carrier/wrap either, unless he was asleep. We finally found the Baby Björn extra worked, but only if he was facing out. He was uncomfortable all the time. He had severe reflux/GERD, diagnosed from birth. His trunk is hypotonic (low tone) which made getting air bubbles out challenging at best.

I wish someone would have told me to stop eating dairy and soy before he turned 1. I wonder sometimes if this would have resolved some reflux issues. Regardless, I have worked diligently to create the best diet for Sebastian and his reflux. Increasing his ‘milk’ intake affects it tremendously. We started him on Neocate Jr (hypoallergenic formula, dairy & soy free, fortified with amino acids) to increase his calories. At the same time (June 2012) we changed his Prevacid dose. What followed was a very challenging two weeks. A lot of reflux. A lot of discomfort. A lot of whining. Very little napping. Part of me couldn’t believe he was drinking formula after successfully avoiding it for all of baby and toddlerhood, the other part didn’t care because he needed to gain weight.

Fast forward to post G-tube surgery. Before Sebastian could come home from the hospital he had to have feeds up to 200ml every 4 hours. Each feed took 1 hour to administer by pump. We got to 180ml with reflux/spitting up. The nurses (and us) wanted to know why 200ml? The dietician said that it was mainly if he was having a bad /sick day then he would need that much. The prescription was 400ml each day. No instructions when, how much, how often. Just 400ml on top of what he ate during regular mealtimes. I knew his body couldn’t handle 200ml in one go, so I had to figure out a schedule that would work for him. Just as I did when he was a baby, despite the schedule the nurses in in hospital tried to instill.

I have spent the past 8+ weeks trying all different combinations of amounts with food, without, etc. While also slowly trying to increase the formula to get it up to the 400ml mark. We learned that Sebastian prefers to eat while getting his milk by pump/bolus syringe, at least at the beginning since the pump feeds go between 45-60mins, depending on volume. A bolus is a 20/60ml syringe we slowly administer. I use these for snack time, twice a day. Sometimes we use them while we are out because it is easier and because to get fed via the pump, he needs to sit still/cannot be moved.

For lunchtimes during the week, he often eats in his bean bag because he’s so tired after school. Breakfast and dinner are in his Red Racer.

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Sebastian prefers eating orally. He loves food. Especially chocolate. His body also loves food. The formula, as hypo-allergenic as it is, is still formula. First ingredient listed is corn syrup solids. Yuck. But he’s gaining weight. He’s also refluxing. While he does need liquids, solids are better for his reflux. I’m planning to switch to a homemade formula and blended diet as supplement to oral feeding. More on that next time.

On Monday we return to the GI Clinic for a check-up, 9 weeks post op. We find out exactly how much weight he’s gained (we weighed him in at home as gaining about 5 pounds!!!). We also find out if and when he’s ready for his Mic-Key Button. He’s stopped napping since his surgery. He still gets tired, but also has more energy and discomfort. His body can’t really lay down after a big meal/feed because of the reflux. He doesn’t want to do much either and he spits up at least once. There is a lot of whining which makes doing activities a challenge (once Lula is down for her nap). Some days are absolutely exhausting for both of us. I remind myself it will get better, but the process is slow.

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Sebastian still gets a lot of air in his tummy and it is still difficult to burp. One bonus of the tube is venting. We can open it up to let air out. It doesn’t always work but when it does, I’m not sure who is more happy, me or him. It is a relief for both of us!

So far it is a love/hate relationship with the G-tube. I love the weight gain and the increased energy. I hate the discomfort and reflux. We are working towards the balance. As things improve each week, I know we will get there. We have to.

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2 thoughts on “G-Tube Chronicles: Recovery Part 2, Feeding and Side Effects”

  1. That pouty pic is so preciousxx thrilled to hear your heading down the blended food diet! I know a few kids who do this and it works beautifully.

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  2. Hi Kara, wishing you and Ali continued strength to be such fantastic parents. Thanks for sharing this. It really gives an insight when one is on the outside. CP used to be all but a diagnosis to me – but thanks to you I can see things differently now.

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