Days at Childrens Memorial Hospital

Lucian and today
Category: Life

O where do i start? God i don’t even know.Ok so they called me today and told me they where doin this dialation thing at 1pm so we had plans to be there early way early and when we were on our way they called and said that they were gonna take him early and i told her we were on our way and she was like no were taking him in like 5 minutes i was so pissed off it isnt funny so we neverr got to see him before he went. We get in there and asked how long he had been back and they said about twenty minutes and then i looked over and his oxegen was undone luckly he was fine at that point. So then a few moments later the two nurses that were both in lucians pod said they were going to lunch and left and then soon after that the nurse practioner came in and ask how he was doin and i was standing over him and she was like he is doin great as he was turning blue around lips and his lips were purple and she was looking around and said where is lucians nurse where is joy? Noone knew but us that they had went to lunch and not told anyone else so while he is desating she is running around looking for his nurse to get someone to suction him out when she could of done it herself. So then finally they got someone over to suction him and he seemed to be ok. One of the other nurses came over from the other side and said she was sorry and i told her i was really mad that i dono why they even went to lunch together in the first place let alone not tell anyone. She said im sorry i was on the other side i told her that they shouldn of even put her in that position it was not her fault. But i still let them know i was mad. Anyways on top of that they did not explain the procedure they did well at all. First of all it is a tube and it goes in beside his g tube and comes out his mouth. so he has a long end that comes out his mouth and around his ear and is taped on his tummy the end that is out his g tube is long also and it is taped to his tummy so its like floss almost but with a tube. They told us it was going to be come in out his nose and out his button. I am so mad. When i asked why not his nose they told me b/c they can only dialate so big up the nose so thats why they went out the mouth instead. Other than all of that bull shit i think he is doing ok, im just hoping the tube down his throat dont hurt his malasia.So anyways i guess now they are gonna see if we can be transfered back home to have all of this done since the reason we came up here is not even the reason anymore. We already called back home and they are gonna get in touch with chicago. They said there goals for him to be able to go home are to get off the oxegen get on bolus feedings and get the tube out and get the dialations situated and he can start feeding through his mouth. I would imagine he would get to go home before they start the feedings in his mouth i would think.The lack of communcation at this hospital sucks i thought springfield was bad but hell there was atleast always one nurse in the room. And the doctors there would atleast ask if we had any questions everyday here hell you have to go looking for them it is not right at all. So tomorrow chicago will be in touch with springfield. I have a ton of stuff to do at home we thought wehad most of it taken care of but we still have alot to do. I have to get a baby bed that tilts for him and i also have to get a changing table. And i have to rearrange alot of stuff other than that though i think everything is mostly in line except some cleaning just general cleaning because im so much of a perfectionist. But i will be on again to let everyone know what is going on.