Friday, January 30, 2015


As most of you have seen on Facebook we are finally home. As I sit here writing this post I am watching my little man sleep in his pack-n-play in the living room with all of his equipment surrounding him. I know it has been a while since I have posted something, but we've been busy :). I will try to get everyone caught up as best I can.

After surgery on January 5th, Colton was easily increased up to full feedings. He tolerated all of that very well. He got his CVL out on January 10th. We tried to wean his setting on the ventilator to be able to get him off of it. We tried him on CPAP through the ventilator where he would breathe on his own and just get support from the ventilator. Yeah, it didn't work. He got cold and his carbon dioxide increased to a very bad level. We put him back on the ventilator and had to increase his settings quite a bit to get him back to baseline. We decided that that was the last time that we were going to try him off the ventilator. His right lung had collapsed again and we had to start over with weaning him. We finally got him on some good settings for him and were just waiting for the home ventilator to be delivered.

In the meantime, we had to complete our training for his care. Nick and I had been doing his care pretty much from the time surgery was done. We had to have some other people learn his care so that we had some support, so my parents came up to the hospital and learned how to do trach and g-tube care, suctioning, and tracheostomy changes. We had been told that it would take 2 weeks for his home ventilator to arrive at the hospital. Well, it showed up on January 19th and we were able to put him on it. He got a blood gas the next morning which showed that he was tolerating the vent very well. Because of insurance, Colton had to be on the ventilator for 3 days in the hospital. He tolerated those 3 days like a champ. The biggest problem we had was getting him to pass his car seat test. We ended up having to increase his ventilator settings since in his car seat he is kind of scrunched. He finally passed it.

We have been home for a week now and that week has been very busy. Taking an infant home with a trach and g-tube on a vent comes with a lot of stuff. We had to go and buy storage containers to be able to store all of the stuff. Eventually everything will be labeled.

We also have a mobile NICU in our living room. At night most of his equipment goes into our bedroom. It's definitely a process. We are finally getting into a routine and have his care down pat.

In the last week we have gone to 4 doctors appointments. Getting ready to go to these appointments is a process that takes about a half hour, although we are getting better at it. Last Friday we went to see Colton's pediatrician. He weighed in at 8 pounds 15 ounces. His pediatrician was very thorough and really seemed to care about Colton. We are excited that we picked the right one!  Then on Tuesday we went and saw the doctor that did Colton's trach and g-tube surgery. He was weighed again and this time weighed in at 9 pounds 9 ounces. That time he had on his clothes and a diaper so we kind of thought that it was a little much. Everything check out good at that appointment. That night Colton had an oxygen desaturation event that didn't respond right away to suctioning or increasing his oxygen, so we thought he was having another seizure. Thursday we took Colton in for another EEG. That hasn't been read yet, but the person who did it said she didn't think there were any seizures on it. Yeah! Today was the fourth appointment. We went and saw the doctor that is going to take care of Colton's ventilator and oxygen. Colton was weighed again. This time he was 9 pounds 12 ounces. Maybe the last weight wasn't so far off! We ended up going up on his ventilator settings today because of the desaturations and Colton seems to be doing better with those settings.

Last Saturday Colton got his first bath at home. He actually liked it even though the picture doesn't seem to show that! It was a treat to figure out how to do it, but we made it work.

That's all for now, I will post more later!

Thursday, January 8, 2015

One Month Old!

Colton turned one month old on Tuesday!  Since he had just had surgery on Monday we waited until last night to do any pictures. We had a good time doing our mini photo shoot!

My little man is getting bigger. Yes, that is a 3 month onsie. He is getting so long that the newborn outfits we got him are cramping his legs. He was kinda sleepy in these pictures, but we think he really liked sitting up for a change. Since his surgery on Monday he's been opening his eyes more and moving his arms and legs quite a bit more. We are starting to be able to tell when he doesn't like something. He scrunches his face and tries to cry. He has a bit of an air leak around his trach so we can sometimes hear him when he cries. 

We got news yesterday that if everything goes well and is on track, our tentative home date is January 20th. We have ordered a ventilator in preparation for him going home on one, but we are still going to try to see if we can get his settings pretty low or get him off the ventilator all together. He is back up to about 1/2 feedings through his g-tube. Hopefully by tomorrow he should be up to full feeds and we can get his CVL out in the next couple of days. We are pretty sure that we saw Colton's first seizure today. The current plan is to get another EEG and possibly start some seizure medication. We were prepared for these to start happening, just hoping we can get them under control fast. 

We are excited about the possibility of getting Colton home and figuring out how to do things here!

Monday, January 5, 2015

Quick Update

Colton had surgery this morning for his tracheostomy and feeding tube. He also had a nissen fundoplication done. See more about that Here. He did very well during the surgery. The surgery was supposed to be done laproscopically, but when the surgeon went to try to move Colton's liver it didn't cooperate like it was supposed to so he had to make a bigger incision and open Colton's belly to do the surgery. The surgery went great from there on out. The entire surgery took about 2 hours to do. When Colton got back to his room he was very sleepy. They put him on a fentanyl drip to help control his pain. He pretty much slept the whole day until about 7 pm when he started to wake up a little bit and get his characteristic scrunched face and kicking his leg.

Now we are going to try to see if we can get Colton off of the ventilator or at least get him on the lowest settings that we can. In a couple of days we will start Colton back on feedings and hopefully get him off of his IV fluids. We are hoping that we can get him home in the next week or two. We have been working to get set up for home care and get all of his equipment in order. We are sure the first couple of weeks when he comes home are going to be full of adjustment and changes, but we can't wait to have our baby home.