1 Month Post-op!

Carter had his surgery exactly 4 weeks ago, today. What a month! Those first couple of weeks..UGH! I had this constant nagging montra in my head "What did we just do to our little guy?" He was in a lot of pain, refluxing, meds every couple of hours, suctioning, no sleep, and lots of crying. Like I said.."What did we just do?"

But after those first two weeks it was like a switch flipped. The pain subsided.We winged him off of his coma inducing pain meds. His adult dose of reflux medicine kicked into high gear. He was happy again! So it was just that stinkin' food aversion. The ENT surgeon kept reiteriting "He has to eat, a lot, orally, and now!" The muscle in his throat, WANTS to close back up. We are trying to fight against what the body wants to do. He has to eat, now! The pediatrician at the hospital, said that she has never seen a baby, go 8 months without eating orally, and then drink from a bottle, so don't even try the bottle. Initially he saw food and he would gag and retch. After a couple days he only gagged if we touch the food to his mouth. Each day was a slight improvement. I kept pushing the bottle, because he seemed slightly more interested in it then in a sippy cup. The whole issue was that he was scared to swallow. He knew it was going to hurt. It just got to the point, that I had to force him to keep the bottle in his mouth until some drops dripped out, and he was able to see that it wasn't painful. This helped, and he would drink one or two sucks and then gag, because frankly formula is GROSS! So Karl tried putting a small drop of choclate syrup in a bottle, and he did a ton better. We did change to just putting a sprinkle of sugar in each feeding, and it took just a couple of days for him to realize that

EATING IS FREAKIN' AWESOME!!!

He is now a champ bottle drinker!!! He loves it! He is eating 100% of of his food orally!!! In just 4 weeks!!! He is one stubborn cuss. The only thing we use the tube for is to give him his meds, frankly because its easy. Ang get this...he lost quite a bit of weight after the surgery. But, between week 2 and then end of week 3, HE GAINED OVER A POUND!! We are still working on solids. He WILL not touch baby food without gagging. But, he is kind of eating pureed regular food! Kind of...

We had a swallow study on Monday. I was nervous beyond nervous. We have never had a really great swallow study. I swear I was like a Dwight sticking his hand out for a breath mint every time he heard the Windows startup sound. Except for me, I would hear the word swallow study, and instant get a pit in my stomach. And this swallow study was a make or break us moment. If it wasn't a good test....I don't even want to think about it. Anyway, it was the most BEAUTIFUL swallow study on the face of the earth. Serioulsy, BEAUTIFUL!!! He had the slightest lag, but as soon as he swallowed again it went down. The OT said that for a baby that has only been swallowing for essentially 2 weeks, that is totally normal. She also gave him some baby food mixed with barium, and although he wasn't thrilled, he DID swallow it.

So he is doing great! He is happy, gaining weight, and eating!

Foreshadowing???

Kyle and Kyra were playing "Anakin and Princess Amadalia". At this specific moment they were re-enacting the wedding scene. I think there may be some foreshadoing going on.

Curly?

I think Kyles hair is thinking about going curly. This was about the age that Kyra's hair really started going curly as well. I'm want to let it grow out a little more and see what it does...I'm not sure how much longer Karl is willing to let me wait! Here is little man just before church.

Surgery

On Wednesday morning we took Babycakers to UMC for the laser myotomy of his cricophyrangeal muscle. They have the kiddos put on these surgical gowns, but they are one size fits all. He was so cute. He kept trying to find his arms, and would finally find them and get so excited, and start to shake them, and then they would fall back into the sleeves. The previous 3 times he has been under anesthesia, it was hard, but this time was far worse. Something about watching your baby walk away being held by a stranger, taken somewhere where you can't follow, to have neccesarly things done that you can't just fix, simply put, it JUST SUCKS!

The surgery took quite a bit longer than we expected. It turns out that not only did they laser the muscle in half, but the sugeron had to take a large chunk of it out. This is Carter's esophagus prior to surgery. As you can see it is completely closed.

This is a picture of his throat in the middle of the surgery. At this point the doctor has lasered the muscle in half, and that is it so far. Again, the esophagus still appears closed. Carter's muscle was unbelievably thick, and fiberous. He couldn't just simply slice it in half. He had to take a big chunk out of the middle. You can see how large the esophagus is now, but how HUGE of a chunk of muscle is gone as well. The one thing I was not prepared for, was the amount of pain that Carter would be in. He was miserable. They put him on two different pain relievers, which turned him into a zombie baby. His eyes would glass over, and he would start to drool. It was ripe your heart out sad. By the morning of day two, he would open his eyes for about 5 minute periods without crying. At that point they took him to do a swallow study. Just before we left the room, to go down they gave him both of his pain meds. By the time we were ready for the test he was back in zombieville. They were able to get him to drink two sucks, before he passed out. But those two sucks went down PERFECTLY, without aspiration!! The test did show that his reflux is HORRIBLE. After all the fluid had gone through, there was evidence of a small amount just hanging out in his throat, but not near his airway. They did some follow up x-rays, and found that a very small amount of formula had kind of pooled in a small pocket where the muscle used to be, but that there was no chance of aspiration with it, and that once the swelling goes down, that will probably decrease as well. So they gave us the go ahead to try and feed him!!!!

Unfortunatly, the biggest side effect to this surgery is acid reflux. The reason being that the muscle is gone now, so the esophagus stays open, so food can go down, but it can easily come back up. Starting in the middle of the night on day two the acid reflux hit him hard. If you can imagine he has this raw burnt area of his throat, that is already killer, and now acid is being spashed around on top of it. He would reflux, scream because of pain, until he started wretching and finally vomit. There was a 20 minute period where he vomited 5 or 6 times, and was just screaming. I think those few minutes may of been the low moments of this entire thing.

But we are allowed to feed him....and he has gone 7 1/2 months without a single inkling of food aversion. He was constatly putting things in his mouth, and grabbing food. Until now. The combination of the pain from the surgery, and the acid splashing around, has made him scared to swallow. I know, seriously? Can't the kid catch a break!! We couldn't get him to take a bottle at all. We would touch it to his lips and he would start to gag and wretch.

So on the morning of day 3, the surgeon called and said that in terms of his esophagus and the muscle..it was open...he can eat. So now we would be turned over to the pediatrican at the hospital to discuss the reflux. The reflux, is not only a problem because its painful, but the more the acid burns his surgical area, the increased chance for scarring of the area. So they began to consider a fundoplication, which is an additonal surgery where the top of the stomach is wrapped and stiched around the base of the esophagus. The purpose is that as you eat, that little section around that is wrapped around, become full and tightens down on the esphogus, so that fluid can't leak back up. So basically you would be physically incapable of vomiting, ever. But there are major side affects just like every surgery. It was decided that we would TRIPLE his reflux medication dose, and see if that helps, and follow up with a GI doctor next week, who will probably recommend additional scopes etc.

So we were allowed to go home.

Now the biggests obstacles are the reflux, and the aversion to food. Last night I tried giving him a popscicle and he gagged. He won't take a bottle. Vomited when I gave him a puff. There is a fantastic feeding specialist who's specializes in food aversion in infants, here in Tucson, but our insurance won't cover it. I'm going to try again, now that he has had his surgery, to get them to reconsider on Tuesday.

He has only refluxed about 6 times since we increased his medication. I'm also feeding him small amounts every hour, and mixing it with a lot of rice cereal to weigh it down in his stomach, and it seems to have helped. Then we will have the appt with the GI doctor sometime in the next week or so.

Today, has been MUCH better. We are seeing little glimpses of our presurgery happy baby. He seems like he is less pain, but we are making sure to give him his every 4 hours on the button. He is sitting and playing again. Smiling when Kyra runs in the room. We have been leaving a bottle of juice next to him while he plays, and he will at least pick it up and play with it, and not gag. I was able to put him at the table with us, and dip a spoon in some baby food, and he mostly just played with it, but I'm sure got at least a taste, and didn't gag at all. So we are really hoping that as the pain decreases each day, he will eat more and more. I know this was a necessary step to help Carter grow and develop, and that each day will be better than the one before. Thanks for all of the calls, messages, love and support. I really do love each and every one, and I'm sorry I'm kind of sucky about returning all of them.