Today was vent clinic with Dr Gelfand for both Lan and Carter! That means ALL DAY at the doctors clinic!! So much is accomplished on these days but they are some kind of stressful!
Both boys got new & different ventilators. Carter moved from Trilogy 100 to Trilogy 200 (more sensitive to trigger) and Landon moved from Puritan Bennett 540 to Trilogy 100. So far so good, Co2 is a little higher tonight so Im watching it and trying to blow it off, but he did eat way too much dinner and too fast and had a belly ache which Im sure is contributing! He actually went to bed with an upset tummy :-(
Carter is doing great on his and even got a new custom trach tonight that he seems to love much better! I customized it with a straight flange bc like when Lan was little, they have triple chins, LOL, and the V-necks irritate them, so I like straight flanges, and I like flex-tends which are a bit longer to move the circuit farther away from the actual stoma, and allow them more flexibility with movement without tugging at the actual hole in their neck ;-(
So anyways so far it seems to be working out....next is a DME swap. Boy these kids keep me busy!
Finally home from teh hospital and sooo much to do! Wedding & birthday parties to plan! DME companies, equipment, and supplies to swap, Dr's appts, Carter has to be molded for new AFO's and a TLSO. Speech therapy evals, training new nurses, and on and on and on!!! NEVER A DULL MOMENT!!
Not sure I'd have it any other way! Might be boring, granted I'd rather be busy doing fun stuff than that stuff, but ya know, whatever! It is what it is!
I did get to meet a new CCHS family today at vent clinic! Go figure the mom already knew of us! LOL
Hoping this website will help her with some resources, but I was able to help her with something she's long been trying to accomplish and that was teh blood results confirming her sons diagnosis and what his expansion repeat # is. I was like "you dont have that info after all this time?" "Hold on let em get Dr Gelfand!" Ha within minutes the results were in her hand! Its so crazy how simple things are and yet when some people dont know how to go about doing something they just dont do it instead of figuring it out!!
Oh well, she got what she needed after 2 years! ;-)
Off to bed I go, my kids are all finally asleep, meds, treatments, baths, trach changes, etc are DONE!
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