I'm glad I waited a little bit to write this post because I think if I would have written it on the day we were updated on Colby's condition I would have been so lost that none of it would have made sense.
About the time I put up my last post (sorry it's so poorly written, I had a hard time putting everything into words) we got a phone call from the ENT Specialist that Colby's doctor referred us to out at Primary Children's Hospital in Salt Lake. I was driving home from a long day of errands and when I saw the number pop up on the phone I got a little worried. With all of the other tests Colby has had, we've found that no news was typically good news. As many of you know, when they give you a time frame for results and they call you before you've reached the end of that window, something is probably wrong. As I talked to the doctor he explained to me that Colby has severe sleep apnea, he explained to me that they measure sleep apnea by how many times you stop breathing, or your oxygen levels drop below a certain percent, over a period of time while sleeping. If you have this happen 10 or more times in an hour, you've got sleep apnea. In Colby's case they found that he was either not breathing or his oxygen levels would drop below 60%, 80 times an hour. That is about every 40 seconds. This put him up high in the severe category. The doctor did try to reassure me and said that Colby is still doing good and showing great signs because he's growing at a healthy normal rate but if this is left untreated then there is a chance that he can have issues with high blood pressure, an enlarged heart, and a few other serious things. Not anything we'd want to risk. Our doctor also said that at one point during the test the technicians thought that they noticed Colby roll over and show "seizure like activity". He's not sure if this is something we need to test on. He wanted us to know that he was submitting the test results to the neurologist at Children's and once he looks it over we'll know if we need to get Colby in for an EKG. He didn't think there was anything to worry too much about because he's not 100% sure if it was accurate information, but we're going to check just to be safe. After hanging up with me he called me right back and let me know that he wanted Colby on an oxygen machine until we got his surgery done. Great.
After I wrapped up my second phone call with him I started making calls to our family doctor and local ENT here in town. Unfortunately there wasn't much I can discuss with them right then because they hadn't seen the results themselves. Once they get the results they'll give me a second opinion on where we go next. After covering my bases there I started to get follow up calls from Primary Children's. Not 30 minutes after I finished talking to Colby's Specialist ENT out there we had Colby set up for surgery this next Friday (February 18th) and we were contacted by a company here in Rexburg that delivers oxygen machines for home use. I was pretty impressed.
So, this Friday we are going
back to Salt Lake for Colby's surgery. When he goes in they are going to do three procedures. One is the surgery and the other two are further tests to make sure that everything is okay. Supraglottoplasty is the surgery they would like to do and then they want to run a Microlaryngoscopy and a Bronchoscopy after the surgery. I'm still doing a lot of research on what these are and what they should do for Colby. Here is a little bit of what I could find on all of the procedures listed above:
Surgical Treatment
There are two operations for treatment. Your doctor will most likely recommend a Supraglottoplasty. The unneeded floppy tissue of the larynx is trimmed in the operating room with your child under general anesthesia. Your child will have a breathing tube in the nose through the voice box after surgery for at least one night. Your child may need to have this operation done more than once. Having the operation may not make the stridor (his pug-like breathing) go away completely, but it will likely be less.
The other surgical option is the placement of a tracheotomy tube into the windpipe to bypass the floppy tissue of the larynx. Rarely is this operation done for Laryngomalacia. Your surgeon will try to do the Supraglottoplasty if it is appropriate and feasible for your child before recommending a tracheotomy. There are occasions and other health issues that make a tracheotomy the recommended surgical option.
If your child has an operation, he / she may still require treatment for Gastroesophageal reflux during and after the operation. It is also important to monitor your child for signs and symptoms of worsening Laryngomalacia.
-http://www.cincinnatichildrens.org/health/info/ent/diagnose/laryngomalacia.htm
(Our ENT in Rexburg says we do not want to do the tracheotomy and we need to avoid that if at all possible.)
After Surgery
Your child will be cared for and closely monitored in the intensive care unit (ICU) after surgery. The ICU doctors will closely monitor your child's total care, while the ENT doctors will closely monitor the airway. While your child is in the ICU, medications may be given to help prevent them from pulling out their breathing tube. These medications make them sleepy and comfortable.
Before the breathing tube is removed (also called Extubation), often children return to the operating room for a Microlarynoscopy and Bronchoscopy (MLB) to see how well the airway is healing. The ENT doctor will decide when the breathing tube should be removed.
Once the breathing tube is removed, your child's breathing will be closely monitored. When the medications that make your child sleepy are stopped, some children experience jitteriness or slight unsteadiness (also called withdrawal) for a short period of time.
The ENT doctor will decide when the next MLB is needed, usually before discharge.
Once breathing is stable, the child will be transferred to a high observation unit (also called airway unit) for monitoring. As children continue to progress with breathing on their own, tolerating feedings and healing overall, they will be cared for in the hospital until ready for discharge.
- http://www.cincinnatichildrens.org/health/info/ent/procedure/ssltr.htm
After I finally finished setting up appointments and working out getting my shifts for next weekend covered, I was called by Valley Medical Shoppe out here. They have been fantastic to work with and they notified me that they had received our case and that they were on their way to deliver an oxygen machine for Colby. With in 15 minutes we were being set up with these.
The machine on the left is the one we are supposed to run anytime Colby is sleeping. The tube on it is 25 feet long (we also have a second 50 foot hose if we need it) and it has been nice because we can keep the machine in the office and out of our room. It's a VERY loud machine and I don't think any of us would get much if we had to sleep with it in the same room. The tank on the right is a back-up in case we lose power. Hopefully we'll be okay for the next week, but it's really common for our power to go out (thanks Rocky Mountain Power).
Colby has done okay with the machine in the few days we've had it. The first day he was not happy at all about wearing his mask. We had to get it on him the best we could and hope that he would settle down for long enough for us to place it correctly in his nose. Once he was finally in bed he would constantly manage to get the tubes out of place. We were up about every two to three hours trying to get it back on him and get him settled back down. The next night we were able to get it on him without him freaking out and he slept with it pretty well. He did push the tubes out of his nose a few times but we all got about eight solid hours and that was a blessing. I'm not sure when he pulled the tubes off but when he woke up at 8:00 the next morning they were around his arm. We got them back on and he went back down for a few more hours allowing all of us to sleep in.
Later in the afternoon he napped with his oxygen on and it took a few tries to get him settled. I think everything tickles his nose and so he rubs the back of his hands against his face and that pulls the tubes out and pushes them up his face. Most of the time he clears his eyes and they end up on his forehead. Other times he's not so lucky and he quickly gets frustrated because he can't see and he's pretty much stuck.
Below is an example of how I would like Colby to wear his oxygen tube and how Colby prefers to wear it.

I'm really scared to get this surgery done. I really wish I could get more information online about what we're going to have done and I'm very anxious for our doctors to get the test results so I can discuss everything with them and figure out if this is really the best option. We will do whatever is best for Colby and we are praying for guidance as we make decisions this week. Everyone that we've mentioned Primary Children's Hospital to, when talking about everything going on, has absolutely loved them and has nothing but appreciation for everyone who works down there. We're grateful to know we're in good hands but we'd love to avoid the surgery if it's not absolutely necessary.
I want to thank everyone again for all of the prayers and kind words that have been sent our way. We are so grateful for everyone who has shown us how much we are loved and we will continue to let everyone know what is going on and what is going to happen next.