Colby's Surgery

Colby's name up on the board, just like on ER... ;-)

We started our day arriving at the hospital at 6am. We were checked in right away and then hung out and visited with the parents of other patients until about 7:30am when we met with the doctor and the anesthesiologist. After our short meeting and an overview of what we could expect, they took Colby in for surgery at about 8am. This was one of the HARDEST things I've ever had to do. We gave Colby to the anesthesiologist after walking down the hall with him, once we were there he turned to us and simply, but kindly, said, "this is as far as you go" and we handed Colby off to him right then and there. After meeting with the anesthesiologist I felt comfortable with him and knew that Colby was in good hands but it was hard passing my child off to someone who I had JUST met. This was the first set of tears shed that day. Thankfully it wasn't a long wait. We were taken to a waiting room where we sat with all of the other parents and family members waiting for the other children who were in surgery that day. We recognized a lot of the faces from people we had talked with earlier that day. It was hard watching doctors coming in and out talking to parents everywhere you turned. Each time a doctor walked in to update a family, you had to wonder when it would be your turn. I thought the wait would have felt like it was much longer but we had things to distract us like updating family, books, homework and Facebook. Thinking we had just sat down I checked the clock and was amazed that a half hour had already passed. We had been told that the surgery would last about 45 minutes so I was grateful that time was going by quickly. I was amazed that shortly after I checked the time our doctor was standing behind us, done with surgery, and ready to talk about how things went. It only took them about 30 minutes to complete everything. With the doctor we talked discussed what had happened and he gave us some pictures and video from the surgery. Everything went great. Our doctor explained that they did a full exam on his airways and we were only dealing with the Laryngomalacia and nothing more serious. The surgery only included cutting away the tiny bit of skin we expected. We were happy that everything looked good.

Pre-op, getting settled before they took him back.

Shortly after talking with Colby's doctor, I was sent into the post-op area to sit with Colby while he woke up and while they updated his recovery nurses before they sent us to the recovery floor. Around 930am Paul joined us as we walked up to our room. To help with the pain they gave Colby some Tylenol and some Morphine. They asked us to wait a full hour after surgery to feed him so that his swelling had a little time to go down. Unfortunately because he had been knocked out because of the Morphine we had to wait until about 4pm to feed him. It took him a while to sleep everything off but he was very eager to eat once he started to come too and that made me feel MUCH better. For the first little bit you could tell he was in a little pain. He struggled to cry and every now and then would have trouble swallowing. However, as more and more time passed he seemed to feel better and was getting back to his "normal" self.

Post-op, resting and getting back into the swing of things.

One of the things they had to monitor closely after surgery were his oxygen levels. Most kids with this surgery have to be placed on breathing tubes to help for the first little bit because the surgery is done at the top of the airway. Thankfully Colby was on room air shortly after surgery and he continued to progress without assistance. We were given an oxygen mask that we could pull out in case of an emergency and to be safe we left it on his pillow, blowing towards his face, when his numbers would get into the low 90's or even the high 80's but for the majority of our stay we didn't have to use it. He would get low when he got upset, during diaper changes and shuffling him from lap to bed, but those kinds of drops are typical in children who are upset and once he had calmed down everything when back to normal. We were monitored for 24 hours at the hospital and when we were checked on the next morning we were excited that we were cleared for release. All things considered the surgery could not have gone any better.

The day after surgery, Riann getting to play with Colby. He loved having her sit up there in his bed with him. He watched her the whole time she played "Doctor'. I love that you can already see how much he loves her every time they're together.

Riann came up and visited Colby on the day after surgery. She seemed to have a great time in the hospital room. She has gotten to play stethoscopes at our family doctor's office so when she saw one hanging up in Colby's room she immediately asked to play with it. The nurse assigned to us for the day offered it to her and told us she could take it home. We were amazed. Riann LOVES it. She calls it her "Doctor". She asks if she can Doctor everything and is constantly listening to everyone's body parts. The nurses were fantastic up at the hospital. We were very well taken care of and we were grateful for their kindness and how gentle they were with Colby.

We have been amazed at the difference this surgery has made in him. When he's resting he's completely quite, like he never had any issues at all. He does occasionally have stridor (the noise he used to make when breathing) but we think that is more related to the swelling he's had and a small cold he's gotten since being home. We notice ourselves checking on him constantly because we can't hear him anymore. Other than his flip in sleeping habits, he seems to be healing great. We are working through his shortened sleeping periods, probably not as patiently as the Lord would like, and he seems to be slowly making progress.

Thank you to everyone who has helped us through this process. Having so many people to update on a regular basis has helped me cope with everything much better then I would have had, had we had to do it on our own. In an effort to make sure everyone was updated we have been forced to focus on the positive and that has helped us keep things in perspective, even during the rough times. The Lord has blessed Colby with a quick recovery and we pray that as we do our follow up appointments we will get more and more good news. As we talk to other parents dealing with the same problems Colby has, we understand more that there is much to be grateful for. Many of the other children, we have learned about, deal with problems much greater than this. Laryngomalacia is one of the smaller issues that they have to deal with on a daily basis and we know we are blessed because it could have been much worse. We appreciate everyone who has helped us through this. We are grateful for such amazing friends and family members. Thank you all we couldn't do this without you.

A visual explination

First, I'm sorry if you are someone with a weak stomach. I'm not usually too bad with stuff like this but recently the "real" pictures have been getting to me. I can do the illustrations just fine but there's little out there, in an illustration format, that actually shows what's going on.

Paul found this picture under Google images. The image on the left shows what a normal Larynx should look like. The hole in the middle is the airway. The photo on the right shows what happens to someone with Laryngomalacia. In Colby's case I don't think it's THIS bad because he still breaths but the cartilage around his Larynx is soft and it does flap forward, this vibrates and creates his noisy breating makes it so he has to put extra effort into breathing.

Finding this image has helped me understand better what we were looking at. When they've scoped him to diagnose his condition, and to check his progress, they haven't really shown us what we they looking for. I imagine they didn't go into depth mid-exam because it's got to be a VERY uncomfortable proceedure and it wasn't something Colby would sit calmly though. I think, to make sure they didn't spend more time in his nose and airway then necessary, they felt it was better to explain after confirming the condition. The only problem with that is we were left to our own imagination what was going on. I don't say that in a negitive light because I wouldn't have wanted the doctor to stop and walk everyone through what was going on mid-diagnosis either. There were diagrams in the office that we could look at but there wasn't anything like this. We understood the general problem and that's what we needed at the time. Now that he's going in for surgery we wanted a little more information and by looking at it further we've come to better understand what's going on. I still don't like the idea of surgery but if this is what needs to be done, we'll do it.

Hope I didn't gross anyone out too bad... Hope this helps.

Update

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.

Colby's Sleep Study

This Saturday, February 5th, we did Colby's sleep study. It was an interesting adventure. The sleep study was scheduled at Primary Children's in Salt Lake. We left Saturday morning and met up with my brother, Jake, and his family and spent the afternoon hanging out. We ran a couple of errands, did some shopping, and went to my aunt's house for dinner. It was nice to be out with family for most of the day and to get a chance to relax before going in for the study.

We left my aunt's house about 7:30pm and went up to the hospital. Once we were checked in Paul helped us get settled and then headed back with my brother and Riann for the night. They would only let one parent stay over night and since I had the food I got to stay.

The technicians who got us all set up were wonderful. Kristie was the one who helped us the most and she was great at explaining everything as they got started. They were really gentle with Colby and did a great job interacting with him.

(Getting set up and checking out everything that was going on.)

When they first started Colby was very excited to see new people. When they would get close to his face he would talk to them and he watched them closely as they maneuvered around him. As the other technician, I think his name was Derek, started reaching around to put Colby's chest strap on Colby grabbed on and held his arm tight. It was really funny to watch. Colby didn't mind getting all of the wires attached to his head, until they put the mesh cap on to keep everything in place. At that point he had been touched enough and didn't want any more. It took them about another 10-20mins to get the rest of the sensors and wires hooked up before I was able to pick him up. At that point he didn't want to be cuddled, he just wanted to eat. I was grateful for that because it meant that he was tired. It was hard because you could tell he was extremely uncomfortable and with the bundles of wires we had to work around and that made it hard for both of us to get settled.

(Angry and ready to be done. Too bad it was just the beginning...)

Once we got him calm, we laid him down and prayed he'd get some sleep. He did a good job and went right down. Part of the testing process is making sure all of the sensors remain in the right spot and everything stays clear. About 30 minutes into the actual start of the test Kristie had to come in and clear his oxygen sensor by pushing a higher level of oxygen through the tubes. He did a good job staying asleep through the check up but he woke up shortly after she left. Once I got him back down he slept for about another 45 minutes before they had to make another adjustment to his chest sensor. I think it got shuffled when I picked him up to feed him. Again he slept through the whole adjustment but woke up shortly after she left. So I fed him again and got him straight back down. After the last shuffle he was able to sleep for about two hours before he was checked on again. Like the other two times he woke up a few minutes after she left. Each time I think he just wanted to cuddle because it never took him long to go back to sleep. After the last check he was able to get in another two hours worth of sleep before Kristie came in to run oxygen on him again. She said that his levels had been spiking throughout the night and she wanted to test him for the last hour, running it the whole time, so the doctors could see what he did when his levels were "normal". Unfortunately they only got about 15 minutes worth of testing in before he woke up again. This time he woke up "pulling" at his oxygen tubes, which Kristie said was probably due to the oxygen flowing into his nose. I tried to get him back to bed as quickly as possible but by the time he was asleep again it was 6:30am, time to end the test.

I think in the end, even with all of the up and down, we still got a good test in. When we first talked about his night time routine with the technicians they were a little worried because it does take Colby a little bit to get to bed and because of my late work schedule he normally goes to bed late. They said that if he didn't get right down, or wasn't sleeping good by 2am, they'd have to end the test. I'm assuming that because they didn't have to stop the test early they had enough to go on. They like to have at least six hours of sleep to work off of and according to my math we got just over five. So, I think we were okay. I wanted for them to get a reading of what might be waking him up at night, however, I don't think we got that because when he woke up he it was because he had been checked on, not natural causes, but as I listened to him sleep he did do a lot of the other things I had concerns about, like his gasping/coughing when he first goes to bed.

By the time they ended the test I think Colby was excited to be done. I think he could sense a change in his environment because he seemed to perk right up when Kristi came in the last time. Even with everything still on he was happy and content. As they got him prepped for his blood draw (to check his oxygen levels) he was happy to watch everyone again. He did great while they took all of his sensors off and got him cleaned up. He started to get restless again at the end of it all but I think that was just because he was tired.

(The end of the test, getting all cleaned up and getting the sensors taken off.)

By the time we were all packed up and back in the car, he was asleep. It was a hard drive home, my brother lives about an our north of Salt Lake and it was still dark and I was VERY tired. We made it home in good time and Colby and I went straight to bed. I had contemplated the whole way home whither or not I should wake him up to feed him before crashing but by the time we were inside and down in our room Colby hadn't even stirred. I went a head and left him in his car seat, which was pushing my luck, and crawled in bed. Thankfully someone was looking out for me because four hours later (five for Colby) we both woke up. We were as well rested as possible for the night we had both had and once we got up we got bathed and he was a happy boy.

(All done and ready for a bath!!!)

The rest of the day was pretty good. Riann got to go to church with her cousin Daniel and had a great time playing. I'm SO grateful my brother and sister-in-law were so willing to help us while we were there. Riann didn't even have to think twice about what was going on because she had gotten so much attention from everyone and it was a blessing for Paul and I to be able to focus on Colby.

It will be 2-3 weeks before we get any test results back and I'm praying that everything is okay. Overall I think we'll be alright but we're praying that Colby wont need surgery. After his last follow up with our local ENT we were told that we want to avoid surgery if at all possible so we're hoping that we get good news. We're working hard at hitting that four month mark where things should start to turn around for the better and we should start to notice improvement.

I'm so grateful for our family who fasted for Colby this month, without us asking them to, and for all of our friends who have offered prayers in his behalf. I know that part of the reason things are going well for him is because he has so many people watching over him on both sides of the vail. Colby is such a blessing to us and we are amazed by his growth each and every day. You can really tell that he's excited about life and is learning lots. He LOVES his sister and it is so much fun to watch them grow together.

Thank you all for your support and prayers as we've gone through this experience. It's been an interesting ride but we're grateful for the things we're learning every day.

GRANOLA BARS

In an effort to get healthy I've been trying to keep better foods in the house, especially snacks. I found this recipe in a WIC handout. It's for "Peanut Butter Energy Bars". I've made a few a variations of this recipe and we seem to like it with a little more than what the instructions say to use. I've found that with the few additions I've added it's closer to the "Nature Valley Chewy Trail Mix Bars".

Riann and I made another batch yesterday and I thought it would be fun to take pictures and do a post on it. I haven't priced it out yet to see if it's any cheaper than the nature valley bars but I've been able to make three batches (with the first batch being a double batch) without having to repurchase anything so I think it should be a little cheaper to make my own. I also think that by cutting out the high fructose corn syrup alone they are MUCH healthier too.

Here's what you need:


1/2 c. salted dry roasted peanuts
1/2 c. roasted Sunflower nuts (kernals)
1/2 c. chopped almonds
1/4 c. toasted wheat germ
1/2 c. raisins
1/2 c. craisins
2 c. rolled oats
2 c. rice Krispie cereal
1/2 c. crunchy peanut butter
1/2 c. packed brown sugar
1/4 c. light corn syrup
1/4 c. honey
1 tbsp. vanilla

Here's how to make it:

First get yourself a happy helper.

Mix together the first eight ingredients in a large bowl. Set aside.

Combine peanut butter, brown sugar, honey and corn syrup in a medium, microwave safe bowl.

Microwave on high for approximately two minutes.
Due to variations in microwaves, I divide the time and stir about every 30 seconds, watch it carefully or it will burn.

Add vanilla and stir until blended.

Add mixture to dry ingredients.

Stir until coated.

Spoon mixture into an 9"x 13" pan coated with nonstick spray.
The pan size is up to you. The instructions say to use an 8" square pan, it just depends on what size you want them and how thick you want them.

Press down firmly (it helps to spray fingers with nonstick spray). Let sit for about an hour.

Cut into bars.

I wrap mine in foil to store.

This is the first time I've had Riann help me make them and because of that she's excited to eat them. We had a lot of fun making it. I eat one a day as a snack and it helps cut down my cravings in the afternoons.

I hope you have fun with recipe.