Friday, February 22, 2013
a lot has been going on i am in still in Saint George cause they do not have any opening at the Ronald McDonald house and there is a really bad storm up in SLC right now so i don't want to drive the car up there int hat weather, and i do not have the extra money to spend on a hotel and gas for the SUV so i guess i have to wait till Sunday when the storm passes and hope that place has a room open then, even though i hate it so bad and i am so depressed here at my house it is hard to be here and not have him with me, also on top of it Chris has left for his 5 week training it sucks i hate being alone but we need the extra money so he had to go. but anyways about baby Rayden he is doing good on his new ventilator i am happy about that, but he is having surgery on his eyes as i am typing this i am really sad i am not there with him for this surgery i know he is taken care of up there but i still wish i was there to comfort him, he is having laser surgery on his eyes cause something is not forming right i don't really understand it 100% but they say if they don't do it there is a chance he can go blind so i defiantly want to prevent that if i can! also he needs to get that tube put in his head to drain the fluid in there and they want to do that A.S.A.P but right now they cant do it cause he has an infection and if they do that surgery there is a high chance the infection could spread to his brain and we defiantly do not need that happening, so they are going to wait till his infection is under control and then put the tube in right away. they also had to give him a new feeding tube that goes threw his nose right into his intestine yesterday cause he was throwing up his feedings again, i feel so bad for him that he has to go threw all these things, i miss him so bad i am just broken i feel like i have tried to stay strong this whole time but Chris leaving just broke me. i hope my poor little man starts to get better soon and he stops having all these problems i want to bring him home so bad even though i know it wont be for a while, i just miss him and i am turning into a mess...
Monday, February 18, 2013
well a lot has happened this week i came home to saint george on Friday cause we had some things we need to take care of and we are still here i miss my baby so much but anyways some good and bad things are going on with Rayden lets start with the good stuff, he got switched from his full support ventilator to a ventilator that only helps him as he needs help breathing and the nurse said it is set to make sure that he takes 32 breaths per minute and he is doing 36 on his own so he has not needed to much but they also took him off his morphine and that helped a lot with his breathing, also they took out the pick line in his leg where the blood clot is the blood clot did not break off and flout anywhere and that is awesome, but it sucks it did not come out with the pick line like we thought it would so now we still have to worry about it:( and also they said he has been awake a lot more awesome now when i get back he will not be sleeping all the time and i will also be able to hold him for the first time :) i am a little mad this is all happening while i am not there it makes me sad they told me they were not going to try to switch breathing machines till later this week and the day after i left they did it, i cant complain cause i am happy he is doing so good on this new ventilator i am just sad i am missing it all. now the bad news so i was talking about his brain in the last post well there are 4 brain cavity's 2 of his are really swollen with spinal fluid cause he has a clot in there that is blocking the flow form the spine, last Monday they checked them and said they will check them again today to see if they get any bigger and they did get bigger so now they need to discuss what they think they need to do, they can either wait and watch them another week to see what happens, or they can surgically put in a tube to try and drain it slowly, or they can surgically put in a thing called a shunt it goes from the brain down the spine into the abdomen and drains the fluid right to the abdomen, this one would be a more permanent thing that he comes home with when that time comes. also the clot in his leg did not come out with the pick line like we all hoped it would and this one has also grown in size since last weeks scan on Monday but he is not a candidate for the blood thinner medicine to try to break it up cause he has already had bleeding in the head and this medicine could make it worse so they also need to make a decision of what they want to do with that one to. but i really hope from now on he just gets better, and he can come home soon i cant wait to hold him and love on him.
Wednesday, February 13, 2013
|my handsome baby boy!|
|this is his poor little foot but it|
actually looks better then it ever has
Saturday, February 9, 2013
|his battle wound from surgery|
it goes around to his mid back
Wednesday, February 6, 2013
Friday, February 1, 2013
|hos first feeding.|