The Little Things

I feel like I have been so terrible at blogging about the small everyday things. So here is to more blogging about the small things, because I am sure these are the things I will forget about someday.

Little man standing. He started baring weight in his legs around 11 months and just recently is able to hold our hands and stand on his own or up against toys. He doesn't last long, but he loves it.

This little boy has been on a coloring, painting, gluing kick these days. For his birthday he was given a rainy day kit and inside it had a bottle of Elmer's glue. Who knew a kid could love glue so much. I am fairly certain that if our house fell apart he could glue it back together. He has been gluing EVERYTHING!!!!

Geotrax. What more can I say. We spend hours every day building them. This particular one was "our best one yet!"

Carter eating a Cheeto. He has such an aversion to food that we were completely shocked when he went to town eating/sucking one it. He was pretty proud of himself!

What Changed?

After posting that we have NO plans for Cincinnati this summer on Facebook everyone keeps asking what changed. Well nothing has changed at least as far as his airway is concerned. Our Doctor said that he can't send us there without failing multiple dilation attempts. We are beyond thrilled with the change of plans! So in order for us to to start our new plan little man NEEDS to let the O2 go. We were off after surgery and for the first time ever he didn't need it during the nights. Then RSV (um....seriously!) came along and it came back in a big way. He was up to needing 1.5 liters (that's a lot) and is now back down to an 1/8th. We can't start the dilation process until he has some good time off oxygen. When we get to that point they will go in a enter a surgical balloon and coat it with steroids to expand his airway. We will give it 6-12 weeks and then repeat if needed and then another 6-12 weeks. We really want to get this moving because if the dilation works then we are DONE WITH THE TRACH!!! The only hold up would be RSV season next year. If he needs multiple rounds which they are pretty darn certain he will we will get very close to RSV season next year and they will NOT take his trach out during it so we would have to wait another year.

This is most definitely an answer to our prayers. The thought of surgery about put us on our death beds not to mention the financial killer it would have been. Both insurances most likely wouldn't have covered it and the cost of living here and there for a couple months would have about killed us.

Prayers are real. Prayers are answered. That I KNOW.

Brothers

I could look at pictures of these two all day long...

Meet the Machines

Even though I dream about getting rid of these every single day I still want to remember them. I don't know what for, but I know that I do. So without further ado here are the "machines" as Boston calls them.

This is our Oxygen concentrator. If you happen to come over and this is on it means Carter is being too stingy with his O2 or one of the boys is asleep. It has become the "white noise" at our house. It only goes down to 1/8 of a liter of O2. Most the time kiddos drop the O2 after that, but our little Carter prefers to go the easy weaning route.

This is the portable O2 tank or the "easy weaning" tank. If you come over and it's quiet it's because Carter is doing good on the O2 and requiring none or a 1/16th or 1/32nd of a liter. We also have miniature ones of these that we take out with us when he needs it.

This is his IPV machine. It's what we use to give him his breathing treatments. It puffs really hard quick bursts of air into his chest to break down any junk he has building up in his lungs. This one is new from when we left the hospital in November and it was a total shocker. You forget sometimes that what you use at the hospital almost never is what you use at home. The one we used there was the size of a 4x6 picture and not too noisy. So needles to say I was a little shocked when they brought over the very loud Green Monster. Most importantly though is that Carter LOVES this one. The IPV feels so good to him and I think he likes the extra help breaking up the junk.

This is the Suction bag. It goes EVERYWHERE with us. I probably hate this one the most. Another shocker to us. The hospital suction stuff is pretty quiet because it's hooked up to the wall. Not this baby it sound like a lawn mower starting and is sure to scare kids away. =) I don't think I would hate it as much if Carter were on the normal end of suctioning. Normal is having to suction every 1-2 hours, Carter we are doing really good if it's every 20 minutes. We have no idea why he needs to be suctioned so much, but he sure does. Maybe it has something to do with his airway. Hmmmm?

This is his pulse oximeter. We are supposed to have it hooked to his foot 24 hours a day. We don't. We have it on him all night, during naps, and spot check him throughout the day. It lets us know if he is receiving enough oxygen. His saturation level should be 95+, but he for whatever reason he loves 93 so he is usually 93+. This one makes me a little crazy sometimes. It will alarm if he takes a deep breath, sneezes, kicks his foot too fast, or for no reason at all. It will read that his saturation level is in the 60-70's or that his heart rate is 50. Believe me I know what a saturation level of 60 looks like and thankfully he doesn't ever go there for real. Definitely not my favorite sound to wake up to multiple times during the night.

This is his humidifier. We don't use it anymore thank goodness. It is SO loud! We would hook it up to his trach to keep it moist and avoid it from getting to dry in his throat. How Trav and I ever slept trough this one I have no idea.

This is the feeding pump. We put the milk in the top bag and it allows us to give him his food over a certain programed time. Pretty sure this guy will be around for a while.

Anyways totally boring, but there ya have it. I really do have a love hate relationship with these machines. They allow us to do things for Carter that help keep him home and healthy. I am very thankful for them, but definitely won't miss them.

Surgery and Bronch Day

Today Carter had his surgery to get tubes put in his ears. We weren't really worried about this at all since the whole thing takes 15 minutes tops. We were a little concerned how he would do on anesthisia, but thankfully he did great. The thing we were most anxious about was definitely the bronch/scope to check the condition of his airway.

Right before surgery he was just a tad nervous about all the Doctors standing around.

Getting wheeled back to meet up with Dr. Rohn (our fav ENT) and Dr. Jones (ansthisiologist). We love them both. They were the ones that did all his surgeries when we were back in teh NICU.

Right after Surgery. He did great coming out. A little aggitated was all.

I don't know if it's a sign or not, but every time we go to Childrens Carter makes sure to give the finger. =)

And here he was just a couple hours later. Happy and normal as can be.

And here is Carter's airway. If your thinking "that's tiny" your absolutely right it is SO tiny. We had high hopes that because he has been doing so well on his speaking valve it would be in a lot better condition than it was. They grade your airway opening like this.

grade 1- 0%-70% closure

grade 2- 70%-90% closure

grade 3- 90%-99% closure

grade 4- no opening

Dr. Rohn gave us a significant grade 2 which really means a grade 3. Carter's airway is almost 90% closed. In the picture above the little back dot/line thing is his opening. All the white/pink part is what is supposed to be open.

So what does this mean. First off how in the world Carter breaths comfortably on his speaking valve is such a mystery. Actually it most definitely is a tender mercy. It means that we fall into that stinkin 1% group again. We will try in the spring to dilate it (with a balloon type thing) and steroids to open it up. If this doesn't work we will have to get the surgery that we have been scared to death about. Dr. Rohn is very honest and told us that we will most likely be a good candidate for the surgery. There are so few doctors that actually do the procedure that we would need to go to Cincinnati to have it done. The best of the best are there and that is where we will head if it comes to that. The procedure would entail a vertical incision down his neck and they would take cartilage from his voice box and create and stint in his airway to keep it open. I have no idea what recovery would be like and if it is something that would have to be repeated as he grows, but I am not even going there until we have to. To be honest this has totally thrown me off. It feels good to have an answer about what is really going on, but I was hoping and praying with everything I had that this would not be the answer.

So again we are asking for a miracle and would love your prayers for our little man. And for us we are needing them too.