Let me give a little background before I get to what we were told on Thursday. Campo was sent for his first swallow study when he was 13 weeks old. The reason why is that he had basically been congested for his whole life! Literally! First we suspected reflux and treated that. Reflux got better, congestion didn't. Then it was suspected that he had an allergy to cow's milk and soy...he did and other symptoms improved but the congestion didn't. He also had a lot of trouble with nursing and then taking a bottle. Feeding times were a battle. He'd take a few sips, pull off and cough and cry. Here is what I wrote about how we did feedings back then...
He would start to eat, pull off and scream, choke and cry. Feedings would take forever because we'd have to get him calm, put the paci in and then once he was going on the paci, we'd stick the bottle in his mouth. He'd go for a little bit and then start the whole thing over again. Aggravating! For him and us!So they sent us over to have this swallow study done and I thought it was all a bunch of baloney! Who had ever heard of such a thing as a problem swallowing. Turns out...there is such a thing and Campo has it! When he drinks, instead of the liquid going straight down, it shoots out to the side and sometimes he even aspirates it (it goes into his lungs). You know when people take a sip of something and start coughing and they say it went down the wrong pipe...that is what happens to him. Every time he takes a sip of something it goes down the wrong pipe. We've been very lucky that he hasn't had any further problems from it like chronic pneumonia. So since he was 13 weeks old we've been thickening all of his liquids. The thickener we use is expensive as well as just being annoying to always have to have anywhere we go and to make sure other people who are taking care of him understand how to do it and the importance of doing it. Then when he started drinking out of sippy cups it became a whole new issue of finding a cup that didn't have too fast of a flow and once we did, making sure we always have a cup with us wherever we go. He can't just pick up a juice box and have a sip. We've gotten adjusted and used to having to do this. However, we kept being told he's most likely outgrow it. But this last time we had a swallow study the doctor walked in and said, "Oh wow - this is a big one. We're not used to such big ones in here". My reaction of course was to worry - is there something wrong? Then a couple of friends and family members asked how long he was expected to be doing this...I wasn't sure. So I started to wonder if there was more we should be doing, someone else we should be seeing about this, therapy, etc? So my main objective going into the 18 month appointment was to get answers to these questions.
Our beloved pediatrician, Dr. Durso, who we have seen since Big Bear was 2 weeks old had left the practice to work at Medical City Hospital where I have had all 3 of my kids and where we've been for RSV, swallow studies, Upper GI's, and even ear tubes. The nurse practitioner we see had told me that Dr. Durso would be filling in that day so I made sure that Campo got in for his appointment to be able to see her. She walked in and the first thing she said was that she had seen his name come up a few months ago for a swallow study and began asking me about what was going on. She also was surprised that he was still having to thicken his drinks and felt that he should have outgrown it. After discussing what all had been going on, she recommended that he have an MRI to rule out something called Arnold-Chiari Malformation. Arnold-Chiari malformation is a rare genetic disorder in which parts of the brain are formed abnormally. Malformations may occur in the lower portion of the brain (cerebellum) or in the brain stem. If he does have it, chances are he'll have to have surgery on his skull. There's that word again...SURGERY. And this time...on my baby's SKULL!!!
The MRI is scheduled for Friday the 24th. He has to be put under for it and I'm not crazy about this either. So that is where we are right now - playing the waiting game. I am always commenting about how fast life goes these days. It seems like we move at lightening speed and I'm always wondering where the time went. But right now it feels like time is standing still. Everything has just stopped. I'm at a crossroads. One path leads to everything being just fine (besides probably having to take Campo to therapy sessions to strengthen the muscles) and the other leads to everything being really scary! But I have to wait to see what path we'll be heading down. I have to wait until next Friday for the MRI, then wait for the doctor to call with the results of the MRI...if he has this strange thing we'll probably have to wait even longer to get to see a specialist, then wait to see what they say...it goes on and on. And in the meantime, I am stressed and worried but trying not to be until there is something definite to be stressed and worried about!
I know we are supposed to be still and know that God is God and that He is in control. That sounds great to say...it is VERY hard to do in a situation like this. But I'm trying, I really am. The past several months in my prayer time I've been getting the message over and over to be still, to rest in God...I think it has been preparation for this. I would appreciate your prayers that I can accomplish this. I would also appreciate anyone who knows anything about Arnold-Chiari Malformation (some call it syndrome?) sharing your knowledge with me!
In the meantime, we're back in the wheelbarrow again! Sure hoping for a short ride!!