Okay , not totally accurate but wow what a great title , lol.
Easter eve was a rather eventful day ! It started at 4am which Sir Grumpypants making an appearance to two already exhausted parents . After a hour full of tears ( not just Sir Grumpypants either, lol) we finally got him calm and back in bed heading towards the land of Nod.
Later in the morning when Sebastian woke up we did the normal routine of getting up which entails him yelling " Ready to get up ! " from his crib until either DH or I appear. All bubbly and awake with the thrill of being alive I skip into his room to give him a toy to keep him busy so I can make a quick visit to the other end of the house so as to avoid any mopping . As I walk into his room I see his hand at his trach which he rarely , if ever , bothers. I fuss at him a bit and he pulls his hand away and ... there is no trach ! The dang thing is laying in the bed next to him ! He is just talking away and acting totally normal while it sounds like a tornado siren has suddenly started to sounds in my head. As I am threading the new ties on the new trach I realize I have no ideal how long his trach has been out because his sats never dropped... ( One good thing came out of the trach coming out ... lol)
After a little argument of " No trach , No trach " and a wee bit of wrestling to make the morning more interesting I get the trach back in with no trouble. Keeping in the spirit of the now , crazy morning I just give up and settle us down infront of the Wii which causes Sebastian to hop, holler and all kinda of other crazy , cute things while I attempt to gather my now shattered nerves.
An hour later we head back into his room for his normal morning meds which include an albuterol treatment. After his breathing treatment I go to suction him and it won't go past 4 , for those who don't know this is where the robot from Lost in Space starts freaking out and yelling " Danger , Danger Will Robinson !" Normally the suction cath should pass through with no resistance so usually this means a plug .... in this case it seems it was another bad trach... We now have a total of ten of these now , the circumference of the trach tube gets smaller and smaller inside which doesn't allow the suction catheters to pass though and remove the mucus ... bad bad thing folks...
So , at this point he has had his albuterol which causes his tracheamalasia (floppy airway) to get temporarily worse and we are home alone so I am not comfortable changing it , just in case.... lol. Also , now we are down a trach so I only have one spare trach . I call our DME ( medical supply people) and get to have a lovely go round about needing a trach - now - not on Monday. Three hours later we had a new one tucked safely away in our emergency bag.
Despite having to cancel the day before due to Sebastian's asthma we headed over to his Grampu and Grammy's house for an Easter celebration with high hopes. After an egg hunt that Sebastian enjoyed immensely - the actual plastic eggs were his favorite part - ( He has a serious thing about plastic eggs currently , lol) I noticed his breathing sounded funky. I called the pulm and after a discussion we decided Sebastian needed a trip to the ER. We had a quick dinner before we went because we knew it would be the last chance to eat for quite awhile then headed out.
Sebastian did surprisingly well at the ER and was fine until about half an hour before we left, it was 4 hours past his bedtime after all ! At the ER they doubled his Pulmicort and restarted his Prednisone in hopes of boosting those lungs and sent us home .
At this point Sebastian is starting to wean off the steroids and thank God for that because they make him insane !! I liken it to living with Sybil , he just has no control over his behavior/emotions. I feel bad for him , it can't be much fun to be like that, it sure isn't fun to live with it. Now with the weaning it has started to subside some , much to our relief !
