Up down and all around...

I've been feeling pretty emotional lately...mostly about Hunter, as usual. I feel like when is it all going to end? The worrying, the what's going to happen next etc etc. Sunday we noticed pinkish/brown secretions from his trach, which means blood..now that's not terrible as it's for the most party only a concern if it's bright red blood.  The night before he didn't sleep well and was pretty upset jumping up and down in his crib, gagging himself so we feel that's what maybe caused some irritation around his trach and thus leads to blood being coughed out. Still it's not a fun thing to see...he's only had that happen maybe once before in all the time that he has had his trach. Monday came and less of the brownish/pink secretions which is good but they were still there.

It was not fun at all come bed time....he had been fighting it the past few nights. He wants us to hold him and then when he is passed out and I feel it's safe to put him in his crib he wakes up and freaks out. Not to mention the coughing he was doing...it sounded more like a cough that he was trying to get stuff out of his trach not so much a "sick" cough...however he oxygen levels were going into the low 90's and even the 80's at times.  Finally I got him a puff of Albuteral, which seemed to help and I turned on his oxygen. His levels were back up to the mid 90's from that.

So today he slept in until around 9:30! Thank you, Hunter! He started out in a really good mood, all smiles etc etc. Once we went out to lunch to meet my mom, he was pretty moody. So he's back to being pretty clingy to me. I love him to death but that can be pretty overwhelming since I wanted to get some stuff done today and my mom was here to help with Hunter and he pretty much only wanted me. I know it was a combo of not getting great sleep and probably just overall sick of tube feedings etc etc. He's been through a lot in the past month. I'd probably be pissed off too a lot of the time! Oh and last night he also pulled out his feeding tube AGAIN...I hate it when that happens...simply because I know we have to put it back in and he hates it and it pains me to see him struggle as we insert the tube down his little nose..I pray once his stent comes out next week that's the end of the feeding tube..

We leave next Tuesday morning for Cincinnati...I am now again scared he's coming down with a cold that will cause something to be delayed...Can we please get through a month with no sickness or issues???? I have been keeping Hunter at home most of the time in between our trips to Cincinnati. Which I also feed terrible about...Hunter loves the outside and has so much fun. I know I can't keep him couped up forever and he won't be but it sucks for the time being. After this trip I'll be more laxed on keeping him inside all the time. After all it's summer practically and most colds and flu's are over with.

I really feel as though I am being tested, what next will happen?? And how much more can I handle. I don't feel strong at all. I just want my little boy to be done with all this crap. Don't get me wrong I'd love him all the more even if he had to deal with it the rest of his life but no parent wants their child to have medical issues, no matter how large or small they are. I feel bad because sometimes I am short tempered with Jeremy and even Hunter sometimes... I don't mean to be, but I feel so overwhelmed lately with how this healing process has gone with the surgery. I read that the 2 stage procedure is "so easy" and "no problem"....I beg to differ...I'd almost rather the single stage surgery have been done, that way we'd be in the hospital surrounded by doctors 24/7 who can make the decisions instead of me and Jeremy having to second guess ourselves constantly with, is it healing right? Does it look normal? Am I missing something or are we doing everything just right with the after care part...I am by no means saying that it would have been easier. I'd hate to have seen Hunter under sedation for so long etc. But by being sent home with a stent in Hunter's airway, causing issues with his eating and having swelling issues that required a hospital stay etc etc. I don't think it's a walk in the park as some parents have said. Please keep Hunter in your prayers....