Sunday, May 31, 2015

Disappointment

The last 3 weeks have flown by. We have gotten the table finished and put in the house. Nick and Dan did a great job building it.  We absolutely love it. We have yet to eat on it, since I think we are afraid that we will ruin it. We also need to purchase some chairs, but we can't decide on what we want.  Here's what it looks like in our nook for now.



Since we've had some decent weather, we did some things outside. Nick put together our first ever raised garden with some left over fence posts from when our fence went in. We planted two tomato plants and 3 green pepper plants. Can't wait to see what we get from them! Of course there's Marley in the background!


The last 3 weeks with Colton have been pretty eventful. I mentioned in the last post that we had received Colton's custom trachs and we were waiting until the Monday before our Riley appointment to put it in. We tried..... it didn't fit!  So, when we went to Riley on Thursday May 21st, we took all of the various trachs that we had with us. When we were there, they decided to try a 4.0 Pediatric Bivona with a cuff. This cuff is filled with water to make it a tighter fit so that he gets all of the air that he needs. It fit perfectly! We got a chest x-ray to make sure it was in the right place and it was. We also had some labs drawn to see if we could wean some of his ventilator settings. Everything came back good and we were able to wean his ventilator rate (the number of breaths he gets per minute) to 26 from 30. 

While this all sounds like some good news, it ended up not being a long term thing. Colton really doesn't like change and he showed us how much he doesn't like new things. By Saturday the 23rd, he was back on oxygen. He wasn't acting like himself and his heart rate was staying way to high. We were also having to suction his airway a lot more than normal. My parents were saints watching him through all of of this as Nick and I were at work.  That night we called Riley and talked to the on call doctor and he told us to take the water out of the cuff in case it was irritating his airway. We tried that and it didn't make a difference. So we ended up changing his trach back to his original 4.0 Neo Shiley without a cuff. When we went to do that, we noticed some green drainage on his dressing and it smelled terrible. It smelled like an infection.  Sunday Colton was back to himself, interacting and raising his eyebrows at us. He was also making sounds at us again. This is what we looked like with our old trach back in. 


On Tuesday we called Riley again and talked to our normal doctors. They ordered us an antibiotic that goes into his trach. He gets it 3 times a day for 10 days. So far he seems to do ok with it. His drainage is getting less and less and no longer smells. So thankful that we have avoided an admission to the hospital with this first infection. We are disappointed that his new trach didn't work because we wanted to wean his settings. This is all leading to an appointment on June 8th with an Ear, Nose, and Throat doctor. We originally set up the appointment to have them look at the cleft on the left side of his neck and see if we need to do something about it.  We are planning on asking them to do a bronchoscopy (putting a camera on a tube down in his airway) to see why his new trach did not work. We have a feeling his airway is not made correctly. 

Colton will be 6 months on next Saturday. It's his half birthday!  I can't believe that he is getting this big. I recently got to see a baby that was born pretty close to when Colton was born. Seeing that baby made me sad. She was smiling, cooing, and wanting to sit and stand on her feet. Colton doesn't do any of those things.  It made me realize just how far behind Colton is. I knew he was behind, but to have it put right in front of me made it more real. I love my son just the way he is, but if I was presented with a cure for this I would take it in a heart beat. This is not fair to him. I leave you with a couple of pictures of my sweet boy. 


Saturday, May 9, 2015

5 Months Old!

Once again I apologize for the long time between posts. Spring is finally here and we've been working on some things around the house. Nick and my brother Dan have been working on a new everyday table for our house. It's about done and I can't wait!  They have built it for red oak and it's extremely heavy. It just needs to be sanded, stained, and polyurethane applied. We are still debating on which stain we like the best.  Since Nick and Dan have been working on the table, Nick has been getting the wood working bug. We now have a pretty good set up in the garage with some new tools. Haha.. I now have a new potting bench and a honey do board on Pinterest!  Nick thinks I'm funny :)

Now on to why you are actually reading this blog... Colton is 5 Months Old! Here is our biggie boy....




So the last time he was weighed he was 13 pounds 3 ounces. That was about a week ago. He is totally amazing us. You can see from the pictures that Colton is starting to sit up better. He is getting so strong in his arms and legs. He now pulls things towards his mouth especially his bunny that he got for Easter. He is constantly kicking his legs. When occupational therapy was here last Monday we put him on his belly and he started pushing him self up with his arms. He now sits in his bumbo, but we have to hold his head. He likes it if you put something fun in front of him to play with. 


Here is my favorite thing that has happened in the last month!

video

I am absolutely in love with his smiles. He loves to look in the mirror and smile at himself. 
In the last month we had appointments with Dr. Smith the surgeon and had a visit with our Pulmonologist at Riley. Dr. Smith said everything looks good. His g-tube should last for another year or so before we need to change it out to a new tube. Nothing changed at the Pulmonologist this month. We finally got Colton's new trachs on Wednesday. We have decided to wait until the Monday before we go to Riley again to put in his new trach. I know that we are going to have to adjust his ventilator settings, so I want him to have the least amount of time possible on the wrong settings. So he gets his new trach on Monday May 18th. The goal is to be able to wean the settings on the ventilator but we can't do that until his leak is gone. So when he gets his new trach we won't be able to hear our boy anymore. Hopefully it will just be a temporary thing.  

Recently we've been having problems with our nursing care. One of our nurses that covered a lot of our shifts quit. Our company is having a hard time finding qualified nurses (RN or LPN) to work with Colton since he requires a higher level of care due to the ventilator and trach. If you are interested in helping please contact either Nick or I. 

I want to thank everyone who walked, raised money, and spread the word for our March of Dimes Campaign. Even though it was a rainy day and somewhat cold, we had a great time! As of right now, Colton's Cool Crew is the number one family team for the Fort Wayne walk!