Carter had his balloon dilation of the muscle in his throat last week. The swallow study showed that there was some improvment, but that he will probably will still need another dilation or a botox (yes botox) injection in the future. The botox injection would essentially freeze the muscle in an open position. I know...it sounds funny. But they think there is still a second issue, that being that he doesn't really have the suck-swallow-breathe reflex. Just to be sure they ran every blood test under the sun and also had a CT scan and additional X-rays, and everything came back normal. So today they did surgery to insert a G-tube. A G-tube is a tube that is inserted directly into the stomach, and then comes out through the skin just below his rib cage. This way you can put food into the tube, and it goes directly into the stomach until the issues in the throat or mouth are resolved. So instead of sitting in the hospital for the next six months while we try and "teach" him how to swallow, the G-tube allows us to go home with him, and persue outpatient occupational therapy. I'm honestly nervous about dealing with the tube. It is a rather long, stiff tube that sticks straight out. So I'm not sure how that works with clothes, or how to hold him, etc. But I'm assured that we will be taught everything about it. Supposedly it doesn't hurt him at all, he can still have tummy time and can even go swimming with it. I think it is just the unknown that has me nervous. So there are two things that we are waiting for, in order for us to come home. He has to keep his heartrate and his breathing up for 5 days without a single brady (drop). Right now he is on day 3 of 5. Second, he simply has to heal from the surgery. So how long do we have to deal with the G-tube? It really depends on how quickly he learns the swallow reflex. Some kids its a couple months, others years. We are INCREDIBLY BLESSED to have the NATIONS leading pediatric feeding specialist right here in Tucson. I spoke with her yesterday, and she really seems fantastic, so we are really excited to meet with her next week and get the ball rolling on his therapy (although best in the nation doesn't come cheap. Ugh.).
The rest of us are finally feeling better as well. Kyra got a UTI, but seems to be doing much better. Kyle was still limping quite a bit (he feel off a ledge at the zoo), and was missing steps, and was walking on his tippy toes so I took him back to the pediatrican who referred him to an orthopedic specialist. I took him to Dr. Nielsen, who asked Kyle to do various things..like run across the room, jump up and down, touch his toes, stand on one foot etc. Kyle who has been limping for 3 WEEKS preformed like a little circus monkey. He did everything the doctor asked without any indication that there was a problem with his foot. Little stinker! So obviously the doctor was like "Um, well um...he seeeeems fine." And I look like a crazy!
I unfortuantly got a yeast infection in both breasts, which for me was more painful then labor! I love my OB..she didn't make me schedule an appointment, and come in for an exam, she simply just called in a prescription..so I'm feeling MUCH better now.
We are so grateful for all the help we have recieved from our friends and family. They have really gone above and beyond. They have babysat non stop for HOURS at a time. My mom has pretty much been almost a 24 hour babysitter for the past month. Kyra has been given rides to and from preschool every day. Also, friends have come and dropped off little gift for the kiddos to help keep them occupied, or have taken them out for a fun activities. Not to mention the meals provided by the RS and friends. We are so grateful!
Here are some picture from the surgery today.
Carter waiting for his field trip to the first floor. We love seeing that little face without any tape or tubes on it. This little guy loves his bink!
This is shortly after surgery. The anesthesia knocked this kiddo out! It took forever for him to wake up, and he tried to freak mommy and daddy out by deciding he would rather sleep then breathe!! Here he is chilling under the warmer. You can see the tube. He will be sporting this tube for about 8 weeks, until everything heals really well. Then he will get a "Mickey Button", which is a flat little valve, no tube.
There are those little eye's...he finally woke up..only like 3 hours after surgery! Silly guy!
Could these two look anymore like twins???
We are so glad our little guy is home! The biggest adjustment is feeding him. He has to eat every 3 hours, but it takes him an hour and a half to eat...so that leaves only 90 min between feedings. Then it takes about 30 min to set up the feeds...so I think I'm going to learn to be very productive during that 1 hour break! But at least, he will be on a continuous feed from midnight to 6 am...so as long as he sleeps during those times, then we will be able to sleep as well. We have an appointment with the ENT specialist in about a week, and then he will have either another dilation, or a botox injection in about 2 weeks. We will also meet with the feeding specialist in about a week. He then will go back to the surgeons office in about 6 weeks, and get his long GT replaced with a MiKey button. They work the same way, just one is a long tube and the other is a little button looking thing that lies flat. But we will worry about all of that tomorrow...for tonight we are just happy that all of us, our entire family is under one roof. Happy day :)
