One more week

We have one week until Haley's big day. They scheduled it for May 3rd. It cant come fast enough for us simply for the fact that she is a sedation nightmare. We are very anxious for this surgery because she will be very sick after this just to get to a good recovery point. I know this will help her in the long run. We are relieved that it's time but also very scared. Having to send your child to the biggest surgery of her life is the hardest thing I will have to do.

I have music in my head

If I could write out the notes to the jeopardy song I would because that is the song I have playing in my head. This next week is a waiting game, and it's just a matter of time before we find out the next steps for our daughters life. It's not easy waiting, especially when there is nothing that you can do to change the future. She is truely in God's hands now. I really dont know how to pray but God, she's in YOUR hands! If they deem her ready, then I pray that she's strong, and she can handle this very serious surgery. If she's not ready then we face the trach. The trach is not the end of the world, but it certainly changes ours. I dont even know how long she would have to deal with the trach/vent, but I know the things we would have to know and learn would be even more. I think overall everything we've learned dealing with Haley has been a lot. We've learned to look for changes in her, signs that there is something different/wrong. I am very nervous and anxious as well to get it over with so we know what we're facing. Jeremy and I have been splitting up the nights at the hospital. I really hate being apart, but there are nights that she doesnt behave and it makes us feel better that one of us are here. The problem with that is we dont get the sleep we really need. So we are sleep deprived while also dealing with stress. I sometimes feel that my writing is so scrambly. So as I leave I go with this..... doo doo doo doo doo doo doo, doo doo doo doo doop, be doobedobedoo. (well ok not exactly the right notes but you get my drift ;) )

wowsie

It has been a wild crazy week (like usual). Haley is intubate again, has been since last Monday (the day after Easter). We werent able to get our family picture taken because she was on Cpap and then the breathing tube. They think her pulmonary artery is blocking part of her airway causing her to have trouble breathing. After a CT scan and a bronchogram it really didnt show that she needed a trach, but if she doesnt have her surgery soon she may possibly have one to get her there. Her cath is scheduled for next Friday April 20th. That will determine whether or not she has her surgery. Next Friday is a big day, and a very nervous one for us. As of now it's the same ol same ol. We wait. Jeremy and I have been going out a little big more just to get out. The weather has been beautiful! Next week I have to go home and get Ali to the dentist, and then the next week Joe has one too. I am so ready to be home with all 6 of us as a family!!!

Oh and this morning Haley got to be in a video. One of the night nurses won "rookie of the year" and he chose Haley as his patient for his video award. Then while we were on our walk another person came in and filmed with her too. So honoring that they chose Haley