Saturday, March 13, 2010
So where to start, it has been a long month of march. we started off good and anticipating yet dreading joshua's re-connection or "take down" the week before the surgery me and jonathan caught a cold and were unable to visit him for a week, cant risk him or any of other babies getting sick to, during that week we ended up in isolation, joshy has a becateria that has colonized itself in him and knows how to fight antibiotics, he has then had no positive cultures but we still remain in isolation because of his history which is fine with us. moving on march 3 rolled what seem like very quick and before we knew it it was surgery date, we got there early and asked permission so both grandmas could see him before surgery, i held him the whole time memorizing every little detail (not that i dont know it already) but knew when i wold be able to him better was going to be a while from now. so surgery lasted 4 1/2 hours!! we waited and waited untill our pager finally went off which meant surgery was over and we would be able to see him, we spoke to dr,betts ( our superstar, if you could imagine what people feel like when they see a star, this is what we feel like when we see dr.betts he saved my sons life and he's just the best surgeon) he said everything looked good and what took a long time was putting his line in, but that everything went good! yay! so we go see joshy and he looks a little puffy but so much better then we were expecting, even the dr's were amazed with how well he was handling post OP. great great news, we left a little early to get rest because we hadnt been able to sleep the nights before, so we called all night and he was doing really good, we get there the next day to learn that he was doing so well they tried extabating him, this should of been the first poing where i should of told them not to push him to fast because joshy always suprises everyone wether it be in a good way or bad but he does, so they tried extabating him didnt go so well so they re-intabated him, at this poing joshy is starting to look alot more puffy which everyone asure is normal, he S A T's are fine and i stay there till about 11pm and that is the last good day he had, me and jonathan tend to leave our phones on vibrate when were on our way to the NICU because if not we forget to turn them off inside and were not sopposed to have phone on, so when were getting scrubbed in and putting our things away we notice each of us has about 4 missed calls from the NICU, so i finishing scrubbing and hurry in, the next thing i know is i have dr.anna walking towards me telling me she had been trying to get a hold of me, i hear her talking but attention is towards joshua, who looks 4x his size and has the RT's 2 nurses and the resident all by his bedside not to mention dr.ana, so i know at this poing something is up and not in a good way, then my attention goes towards the big box next to joshy's bed, i find out it's a called an oscilator and from my understanding this is the TOP notch vent he can be on, at this poing jonathan walks in and looks so scarred were both listing to what dr.anna is telling us but at this point were jsut crying and not really paying attention, i have our social worker evelyn holding me and dr.ana telling me it will be okay, the next part is a bit of a blur, me and jonathan walk over to joshua and my poor joshy has lines in every little part of his body you can think of and his body has expanded to it limit. alot of happend that day and the rest of the couple of days but to be honest i dont really want to write about it and most of it i want to just block out. I'll get to where were at right now, it has been a week and 3 days since surgery and since then joshua has had a bunch of stuff going on. 1. his body is retaining ALOT of fluid that is leaking from his viens to his skin tissue (im trying to find the best way to describe it) 2. his body is not releasing this liquid, he's not peeing with out getting lasiks 3.because of the fact he is retaining alot of water AND put his intestines back in which means his lungs got pushed up he is having a hard time breating 3.his body is so used to morphine etc they have to keep upping the doasage in order to keep him sedated. and thats about it well not really but most of it. Good news is they have FINALLY found a good medium of having him pee and keeping his lytes (electrolytes) balanced, he has been able to open his eyes for a very brief moment which means the swelling is going down. I am so thankful for all the dr's that keep checking on him and that have not lost hope, all our family all our friends within the NICU and out that we have made for praying for joshua, and all the people within the blogs that have continued to pray for him as well.! THANK YOU! it's a very slow road but he is slowly getting better and im hoping he makes a full recovery, he's my mighty mouse and my little hero who just wont stop. there's been a bunch of close calls but he hasnt giving up. I thought i was going to lose my mind and had a couple of horrible days where i started doubting everything, but am now focosed to keep my energy up and my positive thoughts flowing,its a day by day process but we'll get there, this has been the hardest week even harder then when he first got surgery. but my little monkey is fighting, and i know he'll make it throught this, we just cant push him, because HE will let us know when he gets better, it's always on his time and we can never forget that. you are my little drama king joshua alexander.