Surgery took 1.5 hrs later we were called into the consult and told how it went. He did perfect and we met him in his room 30 minutes later. One thing I didn't think about was while he was under, they intubated him and when he cried back in our room his voice was raspy. I'm not sure why this bothered me, but again tears.
He wasn't allowed to start feeds until 24 hrs later & this was 1 time I saw him starving, it was late that night, almost 24 hrs without feeds, was one of the few times I saw him hungry wanting to eat and couldn't feed him. When he was allowed his first bottle it was 70mls, little over 2 oz and he downed the WHOLE bottle! Ummm, ya. Did we make a mistake? Is this a fluke? We were definitely second guessing it. In true Noah form, his next feed he hardly took any and we used his g tube for the first time. We were scared we were hurting him, being sore from surgery, but he didn't seemed bothered until the end, he retched. I has never seen a retching episode and OMG, I was freaked out. I thought he was choking. It was terrifying. Since he had a Nissen he wasn't able to throw up at all. So instead, his body wanted to, but he wasn't physically able to and made this awful noise. It was terrible to watch, to this day it sucks seeing it.
I do not regret his tube, he thrived getting proper nutrition and even became a chunk. For us, a fundo wasn't needed, but we consented to it and the Drs. said it's what needed so we did it. Drs know best right? Ha, no. Sadly, we have learned many have no idea. I 100% believe his nissen caused a lot of his oral aversion. If you tried to vomit, couldn't, did this 6-15 times a day, eventually able to vomit, again 6-15 times a day, would you want to eat? He quickly learned food = pain so don't eat. Then here I am forcing food in him, he vomits it, try later, vomits....it was a horrible cycle. We had no answers to why he vomited every feed other than reflux. We aren't talking a spit up. I mean if we feed him 2 oz, he'd vomit, retch, gag until 2 ozs came up. Could take 20 seconds or 3-5 minutes. It was miserable. He shouldn't have been able to get any food up, but he retched so much and so often he loosened it so food could come up. We had 3 upper GI's to make sure everything looked ok and it was, it was just loosened up and for him it wasn't needed to go back in a retighten it.
We did the formula dance. Changed a ton, trying to find one he'd tolerate. We thought his vomiting was do to a formula intolerance. We ended up on Neocate, which is an elemental formula and not cheap. Approximately, $35.00 a CAN. A can lasted maybe 3-4 days. Of course the older he got, the more he needed, the more cans he needed. "Luckily" because he was tube fed insurance covered it. It didn't help with vomiting.
He was still vomiting everyday, most feeds. It was our norm. We had puke buckets everywhere. We were getting use to stares in public when he would start retching and vomit. It wasn't pleasant. People can be rude, people would think he was sick and here we are shopping, puking, back to shopping. I am sure they thought we were terrible parents. We should be home, not out shopping.
Since no one in KY could seem to help us get Noah's vomiting under control we opted to go to Cincinnati Children's Hospital. They have been so helpful to us. They changed reflux meds, suggested trying a GJ tube.{A gastrostomy-jejunostomy tube - commonly abbreviated as "G-J tube" - is a tube that is placed into your child's stomach and small intestine. This tube is used to vent your child's stomach for air or drainage, and / or to give your child an alternate way for feeding.} Redoing a Gastric Emptying Scan--to see how fast his tummy emptied. We did all these things, hell we would have stood on our heads if it helped him. He went back under for a GJ tube placement....why didn't any of his specialists in KY suggest this? I asked them, they told me no....I asked for another emptying scan, they told me no, it was all reflux, he was fine. Call me crazy, but vomiting 10 times a day at 1.5 yrs old is NOT normal. They redid his emptying scan,which proved he did have Delayed Gastric Emptying.
He was a different kid with a GJ tube. He still retched and vomited some, but not near what it was. When you feed into a J, you have to go slow, no more blousing. So he had to be hooked up and fed 20 hrs a day. It wasn't always fun, but beat vomiting constantly. He didn't mind, there were days we tried G feeds, he'd vomit a ton and ask for his backpack. (pack pack he calls it.) Plus his backpack is tiny and cute. Lol
In January 2011, we found out he has multiple allergies; environmental and foods. He tested positive to trees, grass, molds, dustmites, ragweed, milk, peanuts, oats and rice. He started allergy shots that May. I haven't noticed a big difference yet, still hoping. His allergist also put him on a nebulizer to help with his constant coughing and wheezing. His allergist has been 1 of the most helpful people to us.
So, this kinds brings us up to today. I fast forwarded some. I told you all those stories to get to where we are today. We are trying to wean off J feeds, trying to do a blended diet during the day. That's where we basically blend up real food, then push it through his G Tube. There are many benefits to a blended diet, (BD) more calories per ounce, which is nice when you child can only handle small amounts per feed, or has DGE. (slow emptying) plus, it's kinda fun to feed him things other than elemental formula. Also a BD can help with vomiting. It has some for him. He is on 2 meds, given 3x's a day each to try to help his emptying and vomiting. So far so good.
He is in OT, PT, Feeding & Speech, most weekly. He does have sensory issues that play a huge role in his oral issues. He has a very hyperactive gag and IF he puts food in his mouth, he will almost immediately gag. He can look at certain foods, ravioli and jello to name some, and gag and most of the time puke, just looking. He hates crowds and the noise in it. He freaks out, though it's getting better. He hates stickers on his hands, he will gag and puke if he gets squishy foods on his hands. He hates long sleeves shirts if they go too far over his hands. He loses baby control when we wash his hair. He struggles with going down steps, he flips out cries and shakes unless you hold him. Brushing his teeth ha! We force him every night to do it. He is getting better now though. He will bite certain foods, crackers into, though it takes a lot of persuasion, then he spits it out faster than you can say cracker. He never says he is hungry, he will take sips of liquids, never enough to count for anything. He could care less his brother eats. We were hoping he'd see Brock eat and he'd want to, not so much. He simply doesn't care.
We have a long road ahead of us. When will Noah get his tube out is a question we get a lot. The simple answer is when he eats and drinks enough to gain weight and grow on his own. Will that happen this year, probably not, he is becoming more interested in foods, but no actual eating. Could he have his tube for years, yep he's already had it 2 years now and counting. Do I hate it? No, I don't. I hate him vomiting, but I love his tube. It saved his life, I believe that 100%. Do I wish he ate "normally?" Sure, of course I do.
All in all, he is a normal, sassy two year old who happens to eat differently. He makes me laugh everyday with what he says. He is so funny and there is no way I could love him more. If you have any questions, please ask.
Here are some pics of Noah after his g tube surgery and in the NICU with his first feeding tube.
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