Thursday, April 28, 2011

Line Break

Aubree's line never did make it back to working right. We tried all day Friday, Saturday, and Sunday. But Monday morning we were back up at Primary's for her line to be replaced. This was supposed to be an in and out surgery, and it is for most people, but Aubree was having a hard time breathing, because of her cold that she has had for over 4 weeks, so the Anesthesiologist wanted to keep her over night to watch her. That night her Oxygen level kept dropping, and an xray showed junk in her lungs, so they wanted her to stay to be monitored. So we got to stay the next night also, she gets really congested and so that makes it hard for her to breath and it is still making her oxygen drop but they decided to let us go home anyway and just keep an eye on her. I have to get up a couple of times at night and put saline in her nose so that she can breath better. She's also been throwing up blood here and there and today she it was worse, so I got to call clinic today also. They said that we didnt have to go in, but that we will chat tomorrow to see how things are going. So far she's doing ok, she had a little blood the last time she threw up, so maybe we wont have to go in. They will probably want to do a scope on her to make sure that everything is ok in her throat and stomach, so we will see.
Other than that she is doing good, she is starting to really crawl and I am sure by this time next week she will be really fast. We have her feeds up to where she is only on them for 14 hours a day. She is making progress. They only thing that really has me worried is she refuses to eat anything by mouth. I have to shove things in to get her to eat. I know that I need to be patient, but I really want some normalcy, like the feeding tube out and her eating and not always connected to a back pack that we have to lug around all the time. I also hate calling clinic everyday with something new that has happened. I really struggle with when to call them and let them know when something has happened. I dont want to be the mother that is always calling for every little thing, but I dont want to be the mother that doesnt call and she gets really sick. Hopefully she stops having things that I feel the need to call and let the Doc's know that something happened. That we can go a couple of days with out having to be in clinic or at the hospital. Ugh..... I will stop my ranting there! :)


  1. Autumn--Don't ever feel like you are calling clinic too much! Aubree is your daughter and you're doing all you can to help her. I can relate to what you're feeling though. Sometimes I've called feeling like I'm worrying about something trivial and it ends up being a big deal. Better to play it safe, I guess.

    Sorry she had to get her line replaced. Is the new one working well? We will pray that she learns to like real food again! The whole eating thing post transplant has been a huge challenge for Rach too. She's still trying to gain back the 25 lbs. she lost during all this.

    You are an amazing mom. Keep trusting your instincts and know that we are pulling for you and sweet Aubree!
    --Marie Steele

  2. It's been a long ordeal; you've been through a lot. It sounds like you are tired of it all right now, and who can blame you for that? You've handled this all beautifully, and you will get through whatever is left. It's always hard to get to the end when the timing of the end is unknown. You'll get there, though! I've been walking for the past couple of afternoons and can't wait until you are ready to join me. (I have about two more weeks of afternoons and then, when Peter is done with school I'll have to go in the evenings.) Let me know if you are ever around/available and we'll get out for some fresh air!

  3. You go ahead and call clinic EVERYDAY if you want to. That is what they are there for. If they sound annoyed than they are just not doing their job right. You have a very precious little girl who is very fragile right now. So go ahead and call whenever you see something that concerns you.

    I am glad that you guys are home. I cannot believe they had to replace her line. What a mess, but I hope that all continues to go well. Everything is so difficult. The "new life" that cancers gives you is so challenging at times. You guys are really doing well. Hang in there.