So I have thoughts of posting more but then it just doesn't happen.
I have been feeling SUPER overwhelmed with no end in sight lately. And most of the time when I get overwhelmed I shut down and get next to nothing done. However, recently I did start and successfully do my second monthly meal plan and a big shopping trip to go with it. I am working with a couple of new apps so hopefully every month will get easier as I will have most of my data for the month entered.
Well now to what I originally sat down to write about. My Lukie. I feel like I am in a content spot with what is going on with him and I almost didn't realize how not content I was until I was content. And really nothing has changed with his health or his treatment or even really what we can expect. It is that I feel I have a name of something that fits my Luke's breathing issues. My current contentment may be fleeting but I am holding on while I am here.
Yes, Luke has Moebius Syndrome. Moebius Syndrome at a base level is just the 6th and 7th cranial nevers not doing their job of moving the eyes outward and allowing facial expression. However, Moebius Syndrome can come with a wide rang of other issues and not one seems to be the same. Moebius is rare and Moebius Syndrome with breathing issues needing trachs and vents is rare within Moebius. In the states I think I can count two hands the number of Moebius people with or had trachs and vents. And within those none seem to progress the same way. So we have really never known what to expect with Luke and his breathing issues.
I must say until maybe late summer or fall last year I was the eternal optimist and was always thinking Luke getting his trach out was just around the corner. I think I was always thinking that Luke was doing great and should be fine just weaning off the vent then trach. I was looking for the doctors to give me a real reason that he needed it. Some diagnosis or concrete thing other than he just isn't handling things well or we need to just go really slow or he is building up CO2. I felt that we were treating symptoms and had no idea what was causing them and in my mind I wanted to know so we could work on his breathing issues for the correct angle. I like to have my ducks in a row, in their boxes, that are in sorted by size and color of duck. :)
We had 4 sleep studies last ear and we were told that Luke has central sleep apnea and alveolar hypoventilation. We knew about the centeral sleep apnea first and basically it is a brain thing and a lot is unknown about it and it just is, not much just do x,y and z and it will be fixed. We were told at one of our pulmonology visits that Luke's brain could start taking correctly with his lungs in a year, in 5 years, in 10 year or never, they just didn't know. Their feelings were that he would outgrow this and it would not be forever but that it could be a long time. But really we were in this for the long haul. My brain was still on the 2-3 years and then the trach is out plan. This is the first time that I really probably dealt with the reality of Luke and his trach and vent. But still central sleep apnea is vague and unknown so didn't really get me sitting comfortable is how we were going about things.
After the last sleep study results came back they also said he has alveolar hypoventilation. Alveolar hypoventilation, we were told is when his brain isn't communicating to pump his lungs adequately and there can be buildup of CO2. Luke's central sleep apnea falls under his alveolar hypoventilation issue so it was all one thing. There was no change is treatment or vent settings and so life just went on with these notes on a sheet of paper (which I have since lost and I know scan my scribbled notes from my phone calls with doctors). We didn't have another pulmonology appointment for some months and I had forgot about it and to ask more questions at the next visit. Of course when we were at the visit, as always, they think he is doing great and just to keep up what we are doing which is very nice for a mama to hear.
The maybe a month ago now, my mom came across some info on the web that lead her to alveolar hypoventilation and she called me up and was like "Oh my gosh Emily, this is Luke". She had forgotten that I had mentioned it many months ago, but then it hadn't been on my mind either. As I read the links she was sending (I am a researcher by trade but as a busy and overwhelmed mom of two young kids, well just even Luke, I have passed the researching on to my mom who loves to research things) I felt myself grabbing on to something concrete and solid when thinking of Luke's breathing issues. My favorite link, thus far, http://emedicine.medscape.com/article/304381-overview.
So I was finally feeling Luke I was standing on sold ground. Now I had heard this diagnosis before but it just didn't stick the first time. And alveolar hypoventilation still leaves lots of unknowns in when and/or if Luke's trach will come out. But here is something that is describing what my son's breathing issues are like in black and white type.
I am feeling okay with Luke's trach being long term. Oh I would give just about anything to have him not need it but he does. I think the solidness of it is that I see why he needs it and that his brain is the issues. I feel better that his lungs are not a mess but it just seems to be his brain to lung communication.
So what do I do now... I pray that his brain with start working with his lungs correctly and allow him to breathe without the vent or trach all the time. And I enjoy my little boy and his little boy cuteness.