I originally started this blog to start with Luke's story from the beginning. However, I think I may always be catching up, so I decided to start posting more up to date info.
So what is Luke up to right now...
Luke is currently vent and oxygen free while he is awake. He is using the vent while taking naps and sleeping. We have been weaning off the vent during the day since Fall of 2009 with time off the vent starting in July 2010. (I am thinking to do a separate post of how we have been weaning). In October or November 2010 Luke was off the vent all day and starting to try being off the vent for one nap a day. We scheduled a sleep study for the end of January 2011 to determine if Luke was ready and how fast if he was we could wean him off the vent at night. Well the sleep study did not go so well. Luke had been needing oxygen during the day for quite a few months (1/8 to 1/4) and it seemed like in the last month it was increasing. The sleep study showed that he wasn't blowing off his CO2 at night (his CO2 levels should be 35-45 and they were in the 60s to 80s) and so his vent settings while sleeping were increased and he was on mandatory 0.6 L of oxygen while sleeping as well as being put on the vent for all naps. His breath support was raised to 26, his pressure control to 12 and his PEEP to 6. This was disapointing as we wanted to wean but he was obviously not ready. The good thing out of this was that Luke started the day fresh and was able to come off oxygen during the day within days after the nighttime and nap vent changes and was being suctioned less as well. Yeah! We went back a month later, in February, to make sure the new settings were working (we also had blood gases done) and ended up turning up the backup rate to 30 breaths per minute which took his nighttime CO2 readings down into the high 40s and low 50s for the night. They decided to keep him there and so far so good. We got back in July for another sleep study to see how well Luke does at night without his vent support and then how much vent/oxygen support will he need at night.
He does like to pull on his trach and vent tubes which is not good at all. He has decannulated himself (pulled out his trach) three times since November and two times he was totally unresponsive and it took awhile to bring him back. He is not so bad during the day but at night and with the vent on his is not good at all. So we are trying some methods, two sets of socks on his hands right now and we have elbow immobilizers ordered. This is not something I like to do to him but it is LOTS better than seeing him not breathing and blue. His alarm settings on his vent and O2 monitor are turned up now and everyone seems to be more alert with him at night.
Luke is now scooting and crawling!!! He started scotting at the begining of this month and just in the past week has started crawling on his hands and both knees. It is great to have him more mobile and he defeinly enjoys it. He hasn't gotten into too much yet but I am having to back off with my super cleanlieness, which is a good thing.
Luke knows over 50 signs and likes to sign. However, he is not really good at actually requesting things. So we are on a mission with him to make him request the things he wants. This has been going good with a relatively small amount of tantrums. He has been requesting me to sing wheels on the bus a lot lately which right now I say yes most of the time but if he keeps it up I may be saying no more often.
Luke is still eating through his g-tube. We have had to backoff on his calories a bit since he was gaining too much weight but he is evening out now. We will be starting a Talk Tools Oral Motor Study for Moebius Kids in June. I am really excited for Luke. This program is great and the evaluation gave me so much hope for Luke being able to swallow and eat and talk hopefully in the next couple of years. He has a lot of strengthening and teaching of how to move everything but being in this study and using these methods are going to take him far. :)
Luke is a pretty happy guy and loves to look outside, soon it will be warm enough to go for walks on a regular basis. He LOVES books. He is now able to flip pages by himself and so can read them even if mom and dad do not have time to read to him. He will look at books all day if you let him. He knows his letters, colors, numbers, and shapes. He is addicted to "Baby Signing Time" and "Signing Time" and is really good at requesting the videos or music to be played. He is going to be a big brother at the beginning of August and I am hoping things go well as he will not be the king of the house anymore and I do not think he will like that.
So there is what Luke is up to as a 2 year old little boy.