frusterated.

I'm not sure what to do right now. I am scared. Kaylee had her surgery got the trachea put in and the other procedures they were doing during this surgery. Everything went great, she came back and looked beautiful. I could see my babies whole face, once again. Well now we are having issues. The ties that hold her trachea in were cutting into her neck, me and my husband noted this and wanted them changed...her neck was raw and red....it looked awful and had an odor to it also. We asked if the ties could be changed and the nurse said they weren't aloud to change them the ENT would have to come take a look. Well he came and changed them the next morning I guess they decided to take a look after we mentioned it and realized we WERE NOT lying/exxagerating. Or they did know and was just waiting for the ENT to come anyhow....I am more than stressed. Yesterday they call me ( I am home since I have no one to watch Krista during the day and she is not aloud in the picu, i stay home except weekends when my husband doesn't work) well like I was saying they called me around 12 and 'Kaylee wasn't being herself, she was lethargic, her color wasn't right, her blood pressures were low, she had a fever' well it just gotten crazy. Well they said they think there is an infection were the trachea site it, the stoma site. The site is as big as a nickel and should be smaller than a pencil. The part that is as big as a nickel doesn't go all the way down to the trachea they said its only the skin that has 'eroded' down. I am mad, and angry because we have been complaining about her neck and it rubbing it, maybe this was inevitable, maybe it was going to happen. Right now I can only be mad. There is already a positive test for a bacteria I could never guess how to spell that when it is being treated causes inflammation most of the time, they have sent out blood cultures for her blood. They are hoping there isnt staff. The had to take her to the OR to put in a central line because they tried to put one in at bedside and poked many times and could not get it. Her veins are not accessible because her blood pressure is low, and when your blood pressure is low your veins get smaller. Well when they took her to the OR they got a line on her groin with three ports, well they lost 30cc's of blood approximately and so she needed a blood transfusion last night. She did good all night, it killed me to leave but we didn't have anyone to watch Krista in the morning, I couldn't sleep. Worried. I called this morning and she is needing another blood transfusion because her blood is not clotting? I have yet to learn about this. They ran a test on her blood to see what it was doing and how it was clotting and its not clotting well, so she got another blood transfusion. I am so scared. They talk about the bacteria that we know Kaylee has and say that they cant really know how it reacts to treatment, some do well, some are resistant, some get deathly ill. She is my baby. I am so mad, and think that really that's how I am trying to feel better, to put a blame where it doesn't belong. The only person I am really frustrated with is the ENT who did her surgery, It wasn't her usual ENT who I wanted to do the job. It was discussed with her ENT though so I felt confident that this doctor would be good. I feel like he should have paid attention more, been more thorough. There are many little things that make me feel this way. All the different things I have observed. I don't know....


I love her and, I'm scared. That's just it. I just needed to vent.