Our little guy is 2 months old! In some ways these two months have flown by, in other ways it seems like an eternity. Two weeks ago Carter had another ballon dilation and a botox injection of his cricophyrangeal muscle in his throat. The goal being, that the botox would freeze the muscle in the open position, allowing food to flow down the throat. Unfortuanately, not only does that allow food to go down the throat, but it also makes it very easy for food to come back up, in the form of acid reflux. He has really adjusted to everything really well, and seems unphased by all of the testing etc...but the acid reflux just kills him. It rips my heart apart when he wakes up for a deep sleep..gasping for air...his body stiff from the pain. Tears start to stream down his little face, as the acid bubbles into his throat, burning it. After a few minutes of this, he starts to panic, and eventually makes himself throw up. Prior to these last two days, if he was awake he was crying because his throat was so raw. He is already on medication, and we are holding him upright, literally the entire day. In addition, if he starts to cry, we really have to try and stop it immediately, because as you cry your stomach contracts, and causes more reflux. So we couldn't lay him down in the swing, on the floor, in his bouncer..nothing, except hold him. So it did make it really hard to be able to get anything done around the house, or do anything fun or disciple wise with Kyra or Kyle. But despite us holding him, and him being on medication he was refluxing at least 6 times a day, and throwing up EVERYTHING at least twice a day.
Anyway, we had another swallow study and a GI test done this last Wednesday. The GI test was to see how severe his reflux is, because they can't just see him reflux, they have to have clincal proof, before they can do anything more than medication. The only problem is that they can't give him straight formula, they have to mix it with Barium, so that the milk appears on X-ray. The barium makes the milk really thick and so it kind of sinks at the bottom of the stomach. So during the 1 MINUTE that the specialist was looking at the GI films, Carter didn't reflux, and concluded that Carter doesn't relux. So that was really frustrating.
Now the swallow study..we went into the test, thinking that by the end of the test we would be given the go ahead to feed him orally. That was not the case :( Well the muscle is completely open and allows food through. Great. But there are little pockets just above the cricophyrangeal muscle, that collects food, and then automatically empties it. But, now those pockets are not able empty the food. And unfortuantely, those pockets are very close to where the esphogus and the airway meet, and so if food pools up, it easily flips up and goes down the airway instead.
So now what...that is a good question. We have quite the team of specialists working on him..a feeding specialist, an OT, a pediatrician, ENT specialist, a pediatric surgeon, and soon a GI specialist. Its fantastic to have this many resources...but they tend to all have a different opionion on what the next step should be. We are still waiting for the final report from the test, but the OT thinks that maybe the botox weaked that pockets ability to empty..the ENT specialist, says that scenario isn't even possible. So then they think that maybe his soft palete isn't creating a complete seal with the tongue/back of the throat, and is preventing the swallow reflex to really kick in. If we he were an adult, they would have him do certain exercies with his tongue and how he turns his head to get the reflex to kick in.But obviously they can't do that with him.
So the current plan is that we wait a month, and let him gain weight and get stronger, assuming that everything will just improve with time. He has barely gained a pound since he was born..so they are a little concerned about that. After a month, we will do another swallow study.
The problem is that is such a rare condition, that they really don't know what to do with it. Our peditrican mentioned that he is the first case of this condition, in her entire 30 years of practicing. This is only the second case that the ENT specialist has seen. So honestly, they truely don't know quite what to do.
So back to the reflux...we can't just let it go, and deal with it, because the presense of constant acid in the throat will eventually lead to esphogeal cancer. So something has to be done. We are adjusting his feeding schedule to see if we can get his stomach to empty more rapidly. We are also now giving him mylanta through his G-tube, so that when he does reflux, the mylanta will at least slightly coat his throat and now hurt as badly. That seems to have helped to some degree, especially yesterday. He sat in his bouncer for an entire half hour, and he was awake for hours after that, and was happy. This morning he was still doing great. This afternoon hasn't been quite as good, but overall better. So what do they about the reflux. I guess there is another test that involves measuring the acidity level in his throat over a 24 hour period, in order to obtain a clinical diagnosis. Then there are two options. Option 1 is a J-tube, which essentially extends his current G-tube into his intestines,and skips the stomach completely, thus preventing reflux. The downside is that VERY commonly the tubes wiggles itself back into the stomach, espicially if the baby moves a lot..well HELLO of course he is going to move. So the likelyhood of that being a resonable solution is very small, but there is a chance. The other option is a fundoplication, where they take the very top part of the stomach and wrap it around the base of the esphogus creating a little band around it. As he eats, his stomach would fill up, and the band would fill up as well, causing the band to get smaller, essentially closing off the bottom of the esphogus. The end result is that food CANNOT get back up into the throat. So he would not be PHYSICALLY CABALBE of throwing up, possibly for forever. If he has the flu in the future, he wouldn't be able to throw up. There is a chance as he gets older, that the effectivness would decrease but not usually. It is a very effective solution, but it is another surgery, more anesthesia, more risk..but surgery vs. the risk of cancer. I don't know. I'm still trying to figure out this problem in my head.
Now for the ups...which although few in quanitity, make up for the downs a millions times over. Since we have been able to slightly reduce the pain in his throat, we have been able to enjoy the content, sweet, quiet personality inside this little guy. This morning, he smiled at Kyra for the first time, and she just melted. This afternoon, I held Carter up in the sky, and said "Its SUPER BABY!" Kyle spent the rest of the afternoon "getting stuck" in various places so that Super Baby could come rescue him. I love those moments...seeing the bond that is forming between siblings.
Karl recently asked "Well most trials are given to us to help us learn something...do you think we have learned it yet?" Have we learned it yet? I'm not sure. What I have learned is first, it can always be worse. Ultimately, its just food. Its just...food. Its not air, its not his heart, its not a major organ...its just food.
But the one thing that has really hit me last couple days is the fact that we can waste so much time waiting for life to come...
Once we get the pay raise, life will be good.
Once we get a new car, life will be good.
Once we move, life will be good.
All we need is a vaction, and then life will be good.
Once we get past this test, we will figure everything out, and life will be good.
Once we do this produre, life will be good.
Once he can eat, life will be good.
These two months have been full of ups and downs. In a lot of ways we have been feeling, that we just have to get past one more week, just one more procedure, just one more surgery, just one more test and then all of his problems will be solved. I think we are slowly coming to the realization that we will be working on this for months and probably years to come. And, I think we have accepted that...we can do it..we will make it work. Not that we were ever in denial about the situation...I think we were simply...hoping.
I think my mind, my life, has been so wrapped up with waiting for the lastest results, that I'm missing a lot of the little things that make life pretty darn good right now. I wonder how many little smiles, or super baby moments I have disvalued, because I just have been trying to get to the next big step. I hope that I will be able to notice more of those moments and enjoy them as they come. Speaking of moments, here are a couple,that our sweet friend Eloise were able to capture for us!
Kyra has really been going through some growing pains lately. She seemed to have gained a new level of emotions and has been trying to figure out how to control them. She has been really sensitive and seemed to be lacking self confidence (which just killed me.) Also, she has been having seperation issues, when I drop her off at Primary. Well I recently, borrowed a parenting book from a friend, and it had some ideas on how to build your childs self confidence. So I've been trying a couple techniques, not really knowing if they were working or not.
