Sleep Study

It is 11:27pm and I am sitting here watching Ivey sleep. I am watching a monitor with numbers that I have no idea what they mean. Matt would frown if he saw the time and knew I was not trying to sleep too.

Ivey and I made it down here to Scottish Rite tonight by 8:00 pm and only by the Grace of God did we get here. This morning Ivey woke up with a nasty little cough and some congestion. Both to which make me extremely nervous about this sleep study and the outcome. Once we got here tonight I realized that the trach that was changed out this morning was missing a vital piece to it. So, it took an hour to find a trach here in the hospital that could be switched out again just for tonight. Finally, they rounded up a cuffed trach, which Ivey does not wear, but can for the night. Unfortunately I will have to change it out again once we get home. Just so you know I should always have a spare trach with me. I managed to make it here with everything but the kitchen sink and a spare trach. Not good. I am most certain the nurse thinks I am a dimwit. As we were registering tonight a mom was also registering her son. When the girl at the desk asked the name of her son's pediatrician she could not remember his name, nor could she remember where her husband worked?. ? I almost fell out of my seat. How in the world could you not know that? Well, I am eating crow now. Here I sit empty handed running some poor boy all over the hospital for a trach that is a 'special order'. Go figure. Leave it to us to make everything special.

Any way I am listening to my IPod watching an angel sleep. How she can sleep is beside me. Electrodes to her head, tubes at her nose, belts around her midsection, welcome sleeves on her arms and a brand new cuffed trach. But one of my theme songs right now is Suzy Boggus and her song "Hey Cinderella". Truly it makes me laugh. Maybe I will put it on Ivey's player so that you can hear it and get a good laugh too. Seriously, if you are a wife and mom, you will like it. And if you know me, it is my ringtone on my phone, so you may get to hear it for your listening enjoyment. Before this it was "Just another day in paradise"- both are very fitting. Oh, I love my life and in its own special way it is a fairly tale, but it is a unique one.

The plans for decanulating Ivey changed last week, but I wanted to wait until after her birthday to throw it out there. We are at the sleep study tonight, but will go home first thing in the morning. If they results are good, decanulation will come later. This Friday Ivey will go in for her ABR hearing screen. The screen requires her to be put to sleep, so we want to leave the trach in just in case there is a problem during the procedure. So we are here today, come back Wednesday for pre-op and will drive back down at a rooster calling 6:00 am on Friday, which means I will be up by 4:00 am.

Did I mention that so far this week is not going exactly as planned? Honestly, we were all a little deflated that the trach is not yet coming out. But the ABR takes Ivey one step closer to hearing aides. Personally it was a hard blow not having this week go as planned. You know, most things with Ivey have not gone 'as planned' and I think, for the most part, I have taken it in stride. Unlike Matt, I am a little more on the high strung side. He is more level headed than I am. I wear my emotions on my sleeve and he always seems to be a little more in control. (I speak first think later; he thinks first and normally keeps his mouth shut.) He is trying his hardest to teach me that little lesson, but old habits are hard to break.

Anyway, when it comes to Ivey you would think that we would get a break at some point. I just can't explain how big this would be (to get her trach out). I know everyone is excited for Ivey. But no one is more excited for her than I am. It will change her life – literally. In all the ways it changed her life to be trached a year and a half ago, this would set her free in so many ways. It is one more step toward becoming a little girl, not someone held captive to a piece of equipment. And for me personally, it is also a gigantic step. I must tread lightly on how I say this, and I may not say it perfectly, but it will affect my own personal life unlike it will any one else, even Matt's.

There are many crosses to be carried on this journey, but this trach is the one that many times brings me to my knees. So yes, my dad helps with it by coming over to watch Ivey sometimes during the day, as does my aunt, my mom, Christa, Traci and a few friends, but when they all go home IT is always my responsibility, even when they are there it is my responsibility. And yes, I get to do things, but so much time is absorbed by her trach, especially time that could be spent with Ivey and the boys. This trach has altered almost every aspect of all of our lives, and I honestly think she is ready to move past this stepping stone. Not only Ivey is a prisoner of her trach, so am I.

Not long ago someone asked me if I always suction her that much, what he didn't realize, it was a really good day, to me the suctioning was almost nonexistent that day. Unlike today, Ivey required suctioning at least every minute, literally. I desperately want the opportunity to be Ivey's mom, not her nurse.

My point to this, Ivey is coughing more than normal tonight and she is much more congested. It seems that she is getting a nice cold and unfortunately this is the worst timing possible. The nurse is even asking if this is normal for Ivey. NO. She needs your prayers. This sleep study is so important. Please lift her up tonight in prayer that she does what needs to be done tonight to make this study successful.

On an up note, Ivey said 'Momma' for the first time yesterday! No she didn't speak. She signed mom. We have been working on it for days now. Luckily Stacy was there as my witness. Knox and Walker both said dad first and Knox actually called me daddy for along time. It was crazy, but dad was interchangeable between me and Matt. Maybe I will get her on video soon signing 'mom'. It will make any mommas heart melt.

And on the subject that this week is not necessarily going as planned, I had a wonderful root canal this morning – not planned!