Since the last post we have been to vent clinic twice, Dr. Smith, had Colton's bronchcoscopy, Orthopedics and on vacation for 10 days! We are tired!
Vent clinic went well in July. We ended up given Colton a new trach as we felt like the one that he had (4.0 neo shiley) was too small. Colton got a 4.5 pediatric Shiley. This trach is wider and longer. He loves it! He is tolerating the ventilator wean well and we are hoping that we will be able to wean it further when we have our next ventilator clinic appointment. He continues to be off of oxygen.
His bronchoscopy was done on July 29th. The procedure lasted about 30 min and Colton had to be put under anesthesia for the procedure. We weren't too thrilled with the anesthesiologist that did it, but everything went well. Dr. Reddy looked at his trachea (windpipe) and said the trach that we are using is a good one for him. He would prefer that we not use a cuffed trach again as it can cause too much damage to the trachea. He also said that we could go up a size to a 5.0 if we truely wanted to get rid of the air leak. Not sure how I feel about that.
Vent clinic yesterday was great. We finally have the right trach for Colton. Dr. Cristea didn't think we should go up to the 5.0. We weaned his ventilator rate down to 20 and his peep down to 6. Yeah!!! Finally some movement in his ventilation. And we are going to get our new ventilator! Since our home care company has the Astral ventilators and the trial is done at Riley, we are going to get our Astral and put Colton on it at our next vent clinic visit, which is in 2 months!
Orthopedics was on August 4th. Dr. Kishan said that Colton's feet look really good and he no longer has to wear his shoes. Haha... he hasn't been wearing them in months :). We were able to donate them back to be sent to someone who can use them. He does want to keep watching his spine and bones as he grows. Since he doesn't move entirely, he is at risk for having brittle bones. We are going to start giving him more Vitamin D to help with that.
News on the PT/OT/speech front... Colton is getting stronger and stronger. He pulls his legs up and moves his hips. He is grasping toys and loving to shake them, especially his new rattle that grandpa got him. We have also ordered a new seat for him called a Special Tomato Seat. Here is a link to see what we are getting him! Special Tomato So excited to see how he does with this!
We are starting to feed him regular food. He loves his rice cereal. We have been able to give him a few tastes of cereal a couple of times a week. He has also had tastes of oatmeal, sweet potatoes and carrots. He is swallowing more and more, so much so that he is going to be getting another swallow study sometime the end of the month to see if we can do more. In the mean time, we are going to be introducing more food through his g-tube and eventually transitioning to a blenderized diet so that he gets real food and not formula. That is mommy's next big project.... trying to figure all that out! Luckily, I have some great resources including a facebook group and a friend at work whose son is on the same diet.
Vacation was a wonderful thing. It was a good time to get away. We went to Montana to visit my best friend. Marylou and her family were very hospitable. We drove the entire way. Colton did excellent in the car. He did end up back on oxygen during some of the trip due to the altitude in Montana. We spent a day in Glacier National Park. Here are some pictures from our trip.
We have been working on a couple of new projects around the house as well. Nick made us a set of Colts corn hole boards. We got to play with them last weekend when my family came over for some family fun. Here is a picture of those!
We have also been refinishing a dresser for my craft room. Nick found this dresser on facebook and bought it for me for $45. We sanded that whole thing down, took some of the drawers out of the bottom and added some boards on the bottom to hold baskets. We painted it a bright color and are now in the process of looking for pulls and knobs for it. We found crystal knobs at Anthropologie when we were in Indianapolis yesterday. Still looking for the pulls though. Pictures to come when it's finished.
Our next big project is moving Colton's room. Right now his room is upstairs and ours is downstairs. We are moving his room to be in the den so that he can be on the same floor as us. We are going to re-paint the den to match what his current room looks like. Can't wait for him to be able to sleep in his own crib instead of the pack-n-play that he's been in since he came home from the hospital.
I know this post is getting long, soooo until next time!
