Almost Home

Well we are still in ICU at the momment. We were going to be released today but then there was some blood pressure issues, and the equipment couldn't be delivered to my house today; I want a pulse ox and oxygen on hand "just in case".
A couple of things to vent about, there is this really stupid rule that from 8-9 pm you have to leave the ICU. I mean how do you tell a parent who has a child in the ICU that you have to leave while we change shifts, I mean how rediculous. I brought Alec's wheelchair to his room today and took him for a stroll around the floor to get him out of his jail cell of a room. He was happy to be out for a little bit but very upset when I told him that we weren't going home today. As I strolled through the floor I passed other patients on vents and my heart crumbled. Why, why would God let this happen to these innocent little babies and let criminals roam the streets, I don't understand this.
In any case not to jump around from one thing to another but we did manage to avoid a tracheotomy, I don't remember if I mentioned this before but the PICU Dr. wanted Alec to get one and his HEMOC Dr, Dr. Atlas said he wants to avoid it for now but he will most likely need one in the future. Sorry but I'm not a beliver of that, don't get me wrong I fully agree with Dr. Atlas in this instance except for the future thing. I feel therapy will help him, there is something that will help him I know it. If he was to get the trach he wouldn't be able to talk.
He is so happy these days playing with his cards Pokemon and Star Wars, in the box out of the box, he is so funny and Connect 4. His fine motor skills in his left hand are really good, I'm impressed. We have to work on the right hand though, all in time, we have plenty of it.
He wants to get home and see his friends, I asked him who he wants to play with first and he said all of them, with a smile :0)
He is still tube feeding through the ng, we are avoinding the g-tube for now (surgically placing a feeding tube directly into his stomach) it requires intubation and the last time he was extabated all the drooling started, urrrgh!
Okay lets see what else oh, they started him on robotal, sorry not sure of spelling to help dry up his secreations but I am a little nervous about this drug, it doesn't just dry him up it can thicken up the saliva making it difficult for him to cough up, hmm not too samrt so we'll see I might have to do some mommy tweaking medicines when we get home. We are going to start up his blood pressure med again, its a low dose and it's better to be safe than sorry hence the stupid steriod. Well thats where we are now. Say your prayers and kiss your kids, remember the power of positive thinking is the only way to see the light, tears are okay to shed as long as they are tears of happiness, he is still with us, he can't walk without assitance but someday he WILL, he can't chew and swallow food but someday he WILL, and his speech is slured but someday he'll be writing speeches, his right hand is week but someday he will throwing 90 mph fast ball with it.
Goodnight to all!