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!
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