Video of Our Miracle

Special thanks to JR and Sondra Riney for their thoughtfulness in making this for us.  It means so very much that words of thanks are merely not enough.  We love you so very much.

Day 72

Tomorrow we are going home.

It seems unreal that we have been here for so long. Most all faces of once strangers are now faces of new friends. The men and women we see on a daily basis now know Wyatt and our family. Smiles pop in and out of our room to check on us and to play with Wyatt. To say that my angel has touched many lives is an understatement. I will never begin to understand how the gravity of our "situation" has touched people. I will never begin to understand how much our journey has affected lives all over. That was never my intention going into this blog; more so to get my frustrations and fears out. I needed an outlet to cry and scream to, and this blog became that. It became my source of therapy.

The last few days have been really good. I feel ready to go home, but so scared at the same time. I would be worried if I weren't afraid, to be honest. Taking care of a child with a trach is a full time job, even with nursing around the clock. The constant care for a trach child blows my mind. However, I am so blessed to have been given the honor to be Wyatt's mom and to be able to be the one to provide this care for him. He is so laid back. Thank goodness he took after his daddy. He is such a "roll with the punches" kind of child. He never gets excited. When I am bawling over doing a trach change (which I don't do anymore mind you; crying that is), he never even bats an eye. He continues chewing on his hand as if nothing ever happened. I am so truly thankful that with everything we have gone through, he is so easy going.

With that being said, I want to let you in on one of my major faults in life. Ok, so there isn't enough time in the world for me to talk about my faults, but I want to talk about one in particular. You see, Wyatt has had a tough time sleeping lately. The doctors feel as though it is because he was on so many meds for so long that his body is just having a hard time sleeping on its own. Not necessarily withdrawals, but maybe kind of. It’s ok, but it will take some time. Anyway, Sunday night was a sleepless night for the both of us. I am learning very quickly that I can't sit and stare at him until he goes to sleep. He is so very good and it is ok for me to lie down if he is still awake. I mean, at home I have a video monitor and will be able to see him. Not to mention the nurse that will be there. Anyway, lack of sleep makes my mind do some pretty strange things. It always has. When I am sleepy, I am much more likely to think about things that I would otherwise not think twice about. Thus my major fault. So, I should preface this tale by saying that when I get sleepy, I have a hard time making my eyes stay open. It's really bad. If I am tired enough, I can close my eyes and that is it; I'm out. So, during my sleep deprivation yesterday, I convinced myself that I have narcolepsy. Yep, I said it, I convinced myself that I have narcolepsy. You see, I might just have hypochondria as well. Because, if I hear about something, I convince myself that I too have the same thing. Imagine what watching Rent did to me. Yep, you guessed it. I just knew that I had AIDS. It's terrible isn't it? And while I can't even begin to believe that I am telling this for the world to hear, when I was pregnant, as any pregnant woman, I had a hemorrhoid. Lord, I can't believe I am telling this. I am laughing as I type. So, instead of thinking that it was just a hemorrhoid, I was convinced that I had rectal cancer and I was going to die. I even went so far as to go to Mike crying because I thought I was going to die. It's true. I did. Now, mind you I have read the pregnancy books warning of this, but never in a million years did I think it was something as simple as this. My mind automatically goes there. It’s so bad.

Ok, now that I have shared entirely too much with the world (I still can’t believe that I just told the world that I had a hemorrhoid) I want to tell you about Cathleen. Ms. Cathleen is an RN here at VCH. She works for the PICC line team. Since Wyatt’s PICC line was put in, she comes in every day, Monday through Friday, to see him and check the dressing around it. Since she is one of the only people I have seen with regularity, we have become very friendly. She’s one of the sweetest people on this earth. She’s like my Nashville Bon-Bon. Anyway, we started chit-chatting one day about genealogy, which we both adore. She has been a constant for me during our stay. However, I want you all to know that she when she comes, each and every time, she prays over my baby. She lays her hands on Wyatt and says a pray for him. This simple act of faith has carried me so far in this journey. Knowing that there was a spirit in this place who took the time out of their work day to come and pray for my child has done so much for my faith, especially during this time. I pray that when we do go home, if I am able to keep one relationship out of all of the incredible people we have met, that she is the one I am able to stay connected with. She has truly touched my life.

I want to devote an entire blog to Wyatt’s Wishing Well so I won’t talk much about that here. I do want to say that I have never been touched by something someone has done for me more than I have for the event that was Wyatt’s Wishing Well. It makes me so proud to be from Eastern Kentucky, where neighbors still love one another. Where people will go out of their way to help each other, even when it is for someone they don’t know.

Wyatt is napping and I am seriously thinking about having one myself. Tomorrow will be crazy so you probably won’t hear from me. In the event I have a moment, I will bring you up to speed on the day’s events. Wish us luck for our journey ahead. I’ll keep you in the loop though, don’t worry!

Crud.  Naptime is over.

Day 69

So much has happened this week. Lately, I feel as though as soon as I feel good about things, something goes wrong. I hate that I am afraid to feel positive about the direction things are moving. As though as soon as I begin to feel relieved, it will all go south. It makes me so sad.

On Saturday, five days after his initial surgery, Wyatt's very first trach change occurred and was performed by Dr. Goudy. This was to ensure that the stoma (hole or opening in the neck where you insert the tracheotomy tube) formed a nice “track” and that the airway remained stable. However, after the very first one, the trach will need to be changed twice a week to ensure no mucus plugs become lodged within the trach.

This week, Mike and I have been doing lots of trach education. We have been doing all of his stoma care (or cleaning around the stoma) and changing the gauze around the trach like pros. We have also been suctioning via ballard and open suctioning, through the trach, which is the simplest by far. These steps in trach care are the easiest of what will need to be done for our boy.

Mike and I had to do our first trach change on Wyatt on Tuesday. Needless to say, I was petrified. It’s such a big step for a mother. I mean, I had just gotten use to the fact that he had one, now I had to be the one to change it. I mustered up all that I could and decided that I would be the first of us to do this trach change. I wanted to go first because I knew otherwise I would drag my feet. So, to spare you the details, they teach you that having two people for a trach change is best. So, Mike and I dove into our first change.

Let me just say that while the RN that teaches our classes tried to prepare us for your very first trach change, there is nothing in this world that could have truly prepared us for the actual event. I won't bore you will the details, but the process takes two people working as a team to achieve the change. The “helper” has one main job, and that is to hold the trach in place. The “boss” does all of the directing of the “helper” as to what needs to happen when. Once the team gets the change down, it will go smoothly. The first step generally is to loosen the trach ties. Of course, all of this occurs while the “helper” is holding the trach in place. Next, we check his neck for skin break down and wash and dry the area. We then prepare for the actual change. Theoretically, with perfect precision, the “helper” removes the trach, the “boss” puts the new one in, removing the opterator, the “helper” puts the vent back on, the ties are secured and all is right with the world. However, this was our very first change. You can only imagine how things can go wrong.

Mike worked as my "helper" and I as the boss. Generally, one would think that as a wife, being the boss would just come naturally. However, in this situation, I would have been more than happy taking orders from him. So, we began the process of the trach change. No use in dragging our feet! We loosened the trach ties and washed and checked his neck. Ok, that wasn’t so bad. Now for the fun part. I counted to three and Mike pulled the trach and vent out. Now, this is the point when the trach goes in, opterator comes out and ties are tightened and all is said and done. However, once Mike pulled the old trach and vent out, secretions began to spew from the stoma. And not a little, a lot. Our educator had tried to warn us for this, but there is no way that she could have ever prepared us for this. It was like a volcano of grossness! Even though I was totally horrified, I then proceeded to put the new trach in, Mike put the vent back on, and then I proceeded to lose it. I am still not sure exactly why I became a blubbering idiot, but I did. I cried like a big 'ole freaking baby. I couldn't help it. It was so emotional for me. While the RN tried to soothe me, my sweet husband and “helper” continued to hold Wyatt’s trach in place. Remember, we haven’t finished yet and the trach ties are yet to be secured. I was a blubbering fool for a good five minutes while he held on for dear life. This was a dear life after all, my sweet innocent Wyatt’s life. Somehow I managed to gather myself enough to be able to remember that Mike was still holding on. We secured the trach ties, Mike released, and again, I lost it.

There is something very taxing on the soul when it comes to a task such as this. As a parent, you just want to make it better. When children fall and skin their knees, a simple band aid and a kiss is all they need. However, when you are the person responsible for making sure your child's airway is changed, it becomes the weight of the world on your shoulders. You become their lifeline, so to speak. And while you are more than ready, willing and able to be this lifeline, it doesn’t make the emotional aspect of it any easier. The gravity of knowing that if you don’t put this airway back in quick enough, or correctly, then he can’t breathe. It’s so totally overwhelming.

On Wednesday, we had more trach education and this time it was Mike’s turn to become the “boss”. Therefore, my job was that of the “helper” and to hold the trach. When we began, I complained that his trach was slippery from the secretions from his mouth. We wiped them the best we could and proceeded. Mike wanted to sit Wyatt up so that he could check his neck. During this process, I could hear air that wasn’t there before. I told them that I thought the trach was already out. They assured me that it was ok. I checked his stats and they were dropping, fast. Then, the trach came all of the way out, on its own, and again, I freaked. Of course Mike put the trach in and all the stuff he was suppose to do, but I bawled like a baby. I felt as though I had done something, as unintentional as it was, to endanger my child. Again, our educator had to calm me. She reassured me that I did a great job and that I was the one that thought it was out in the first place. She said that I was correct to check his stats and that it was great that I was the first to catch it. However, none of these things could ease my guilt.

Thursday morning, our educator wanted Mike to go again. She must see each of us do a trach change twice and Mike was unable to come on Friday due to work obligations. I will not go into details about this trach change. Basically, because it went off without a hitch. However, when it was all said and done, I cried. Of course I am emotional as it is, but having my son’s very breath in my hands is just more than I can take at times.

Friday I did yet another trach change, with everything going smoothly. And believe it or not, I didn’t cry. I know as time goes on that it will get easier and eventually, it will just be a part of our life. I will be able to change it with one hand tied behind my back. But right now, the fear is consuming my very being.

Also this week, Wyatt has been seen by an endocrinologist. Apparently, because of his erratic feedings while here, his bones are susceptible to fracturing and breaking. Great, right? Anyway, all in all, we are still waiting to see how his blood tests look in order to find out what supplements Wyatt will need in order to get his bones back to where they need to be. They have reassured me that once he gets these supplements, he will be fine.

On a lighter note. When Wyatt’s trach was put in, it was cuffed (the inflatable balloon on some tracheostomy tubes). However, since surgery they have taken out all of the fluid keeping the cuff inflated. Actually, this was done very quickly after; maybe within 3 or so days. The cuff keeps air from escaping around the trach. This is the reason that you can’t hear someone with a trach (without a Passy-Muir Valve) is because air must pass through the vocal cords and with a trach it cannot. Anyway, without giving you a long lesson (which may or may not be exactly accurate), suffice it to say that cuffed doesn’t allow air to pass through the vocal cords and uncuffed does. Anyway, this week I have been able to hear Wyatt! Such an amazing feeling. Now, mind you, it wasn’t like it was before. It’s not as loud or pronounced, as it once was, but I definitely got to hear him. It’s nice to know that I won’t have to go totally without that. Of course, I cried!

On an additional light note, my son has found his “boy” parts. I am not stupid and I know that every baby does it. However, I didn’t realize that it would happen so quickly. I went to his bedside yesterday and found his hand under the blanket. When I removed the blanket, there it was. Of course, as his mother, I laughed. It feels so good to see him reach milestones, even in this hospital. Through all of this, all I have wanted is for him to be “normal” or as close as possible. I now realize that the normalcies that we can see are these milestones, no matter how small they are.

While I am on a roll, I want to tell you what Dr. Cutrer said this morning. Let me say that we love Dr. Cutrer. He has THE BEST bedside manner. Now, mind you, we have had some incredible doctors with great bedside manners, but Dr. Cutrer has just been so wonderful. Anyway, this morning in rounds (which I have learned to always be a part of) he made a statement that made me laugh out loud. Our nurse, Misty, asked him if they were going to remove Wyatt’s pic line today because they aren’t using it at all. His response was “No. Wyatt’s a hard stick and I am a wimp.” Seriously? Is it just me or is it funny that a PICU doctor is a self proclaimed “wimp”? Anyway…..

There has been so much this week and I feel like I could talk about everything for pages on end, but I realize this post is very long. I promise, I will try (please note try) not to go as long as I did this time before I update you. In the meantime, please pray and send positive thoughts that I gain more confidence in taking care of our boy. It’s so overwhelming and I feel unsure at times. I know that I will feel better about things once I am home and “in it”. But right now, I am just really scared and timid.

Things I am thankful for.

Friends and family who are totally selfless. You all know who you all are and I love you all so very much.

Pie in the Sky Pizza. They have chicken alfredo lasagna that makes me drool just thinking about.

Nurses who share their personal stories of life in the PICU. I won’t go into detail or share their story, as it is theirs not mine, but Angela and Heath have helped me more emotionally than one could ever dream. For that, I am eternally grateful.

Sleep Room Accommodations

I just wanted to take a few moments to share my sleep room accommodations.

As you know from my previous postings, these rooms are a hot commodity around here.  Because we live so close and our boy isn't critical, getting one is a rarity.  However, I have been lucky that the last two (yes 2!!) nights that I have been able to sleep (and more importantly shower) in them.  I wanted you to see the accommodations first hand.  I will post more later as today has been an emotional roller coaster.

First of all, this is my bag of necessities.  It's amazing what you absolutely have to have to live on on a day to day basis.  What you can't see are my clothes, of course, hair dryer, a baseball hat (for those nasty hair days) hair ties and clips, shampoo and conditioner and body wash.  All in all, this is how I have been living for the last 2+ months. 

So this is the coveted sleep room.  Nothing special, but a nice, comfie (for the most part) and more importantly, clean, place to lay my head at night.

This is a view from the door looking into the room.  Yes, there is a television.  It plays all 8 channels the rest of the TV's play.  Please remember that we are in a children's hospital.  Now, imagine that over half of these channels are Disney or some other child related channel.  Quality viewing!

My own personal restroom (for the night).  It's clean and that's all that matters!

Now, for the Pièce de résistance, the shower...... wait for it......

Ahhhhh!  Isn't it wonderful?!?!  It is to me.  And even though the pressure isn't as good as I could hope for, it does get me clean.  These days, after playing with Wyatt and watching him smile, a shower is the best part of my day!

I just wanted to share these photos with you.  I needed you to share my enjoyment in the ever coveted sleep room.

Day 61, possibly

I began this morning exhausted. Wyatt has a leak in his trach (which is apparently a good thing) so his vent went off all night. And when I say all night, I mean it. Restful sleep is a thing of the past. My boy rested well, but I didn't. And, of course, a sleep room is totally out of the question. Since the trach was put in, he has been sedated. Oddly enough, it took a few days to ensure this. Because he was intubated for so long previously and on drips because of this, he built up quite some tolerance to these meds. At times it's almost comical. It's as if he says, "that's all you've got." They have a happy place right now, but he does start to stir when it's time for his some of his meds.

They will change his tach tomorrow for the first time. This milestone will come with lots of new "stuff". I will be able to hold him again which will be wonderful. I miss cuddle time. He will be able to be weaned off of his sedation. Poor kid. I seriously joke that he is under so much sedation that it would put an elephant down. He's quite the little fighter, this boy. Most of his little life has been here, in the hospital. But, he keeps fighting, thank God. I like to affectionately refer to him as Rocky. A fitting reference for my blonde Italian baby.

So, I wanted to let you know that I assume that baby Ashton is still here. We moved pods from where he was so I wasn't sure whether or not he was still here. However, last night when Mike and I went down to eat, I saw his mom and dad. Please keep these people in your thoughts and prayers.

The hospital proves for some great people watching. And obviously, I have more than enough time for this. I understand that this is one of the best hospitals. With that being said, I also understand that there are lots of people from from lots of areas who have children here. I think this may also be one of the reasons that the bathrooms are so disgusting. Anyhoo, it amazes me how people leave their homes thinking they look presentable. Now, I know that sitting in a hospital for days on end takes it's toll on people. I know this first hand. There are days that I go out of this room and then look in the mirror with disgust. But I have seen people who walk outside in their house shoes. And while that may be ok at home, it isn't ok in a public space such as this people! Oh, and I have seen more "cracks" (if you get my drift) than I have seen in my life. Belts are in this world for a reason folks! It's like I am in a parallel universe ruled by plumbers!

I'm trying very hard to keep this blog very light today. Yesterday was not a good day for me. I feel as though depression is setting in, hard. It's the why me's that are taking over my mind lately. I can't take my child home feeling like this. While I know that medication is a possibility, I am trying so very hard to just get over everything I am feeling. It's hard though. And unless you have been here, you just don't understand. People constantly telling me to take care of myself. I know that people mean well, but the truth of the matter is, I know what I need to do, but I won't do anything to change it. I must be here with my son. I can't stand the thoughts of not being here. And, when we go home, I know that it will be a million times worse. I anticipate the lack of sleep to be terrible. And I have so much fear. It consumes me at times. More than anything I fear that I am becoming hardened due to all of this. I have always prided myself in being jovial and relatively upbeat. But this experience has left me jaded and hard. It's very difficult for me to look at someone who has a child with a runny nose and be sympathetic. That's so terrible for me to feel that way, but it's true. I want to feel sorry for you, but reality is that if you spent just one hour in my shoes, you would understand where I come from.

On top of everything that I have been going through, I had to quit my job today. I feel as though it had been inevitable, but something I didn't want to face. The people at Ogletree have been amazing. Not only were they my co-workers, but they were my friends. I enjoyed my job and took pride in what I did. I worked with lots of great people, but I worked for two incredible men. Jon and Bill taught me so very much about the legal world. They shared case information with me and asked my opinion on things. Always eager to learn, these simple acts gave me so much self reassurance. They will never know how much they truly touched my life. It was not only for these reasons that I was heavy hearted to leave, but also for my sense of me. I mean, think about it. When you meet someone, they always ask you what you do. For a very long time, nearly 10 years, my answer was legal secretary. Now, I don't have that. Please know that I feel as though my job as Wyatt’s mom is much more important and meaningful. However, you must understand that I have been working since I was 15 years old. Not out of necessity, but out of want. I always took great pride in knowing that the shoes I wore, I worked for. That the bed I slept on, I worked for. It’s such an amazing sense of independence for me. Knowing that if I wanted something, I could purchase it and know that the money I used I worked for. It makes me feel proud. Now, I will have to depend on Mike. Not that I feel shame in this at all. Mike is an amazing man who I am so thankful for. However, it kills me to feel as though I must depend on him. I’ve always wanted to be a stay at home mom, but standing here, in it, I am so scared. I don’t want to lose myself. I don’t want to lose who I am and it hurts to think that my job gave me that. But, it’s time to put on my big girl panties and deal with it.

I'll stop my self loathing for now. It's just been a bad week for me.

To get back on a lighter note, I want to talk about the VCH lingo. It seems that doctors and nurses alike use the term "so" in every sentence they speak. Don't get me wrong, I too am guilty for overusing this term, especially when blogging. However, when I ask a question as to the reason for treatment or medication or whatever my question may be, it always, ALWAYS begins with "so...". I don't know if it's a generational thing, but it is getting on my nerves people.

My mommy has been here for two weeks. And while she has made me nervous at times, I am oh so thankful for her. You see, when the alarms go off for Wyatt, regardless of their reason, she gets nervous. And, if you know my Meme, she obviously took this trait after her. For some reason, I feel the need to comfort her when she becomes nervous. However, I am so thankful that she has been here, to keep me company and to cook for me. She has brought me good home cooked lunches. It's been so nice for a change from crappy Taco Bell and Pizza Hut. It's amazing how quickly you can get tired of stuff like that.

Last weekend Melanie and Rain came to visit. They will never know how much I appreciate their coming. It was nice to laugh again. Of course I went home for my Saturday night in my own bed. Sunday we went to breakfast at Noshville (I'm in love with their pancakes) and then went to the Nashville flea market. The Nashville flea market in and of itself makes me happy. Oh and I was able to find a new lunchbox for my collection. Yes, I collect lunchboxes. Mainly metal ones but particurarly ones I grew up with. I started my collection with Annie, which was actually a lunchbox I had as a child (and my favorite movie as a kid). I have about 20 ranging from The Dark Crystal, Gremlins, Ronald McDonald, Strawberry Shortcake, Holly Hobby to The Muppets, Barbie, Roger Rabbit and my newest addition, Popples. My addiction has even rubbed off on my daddy who recently acquired The Lone Ranger for my collection, complete with thermos. Mike has gotten on my bandwagon with Ewoks. So far it's been a relatively inexpensive collection with the most expensive being $25. However, I still long for the elusive Hee Haw lunchbox which I have never seen for less than $50. If you know me, you know I will never spend this on a lunchbox, so I will continue my search to find it at bargain prices! Anyway, back on my original topic, Melanie and Rain will never know how much it meant to me that they came to see us.

I will end this post as I feel I have gone on about nothing in particular. But, sometimes it's nice to just talk. Most of my days are spent talking to doctors, nurses and a 4 month old. And, if you know me, you know I have a story for everything and can talk for hours, so it's in everyone's best interest if I just stop while I'm ahead.

Things I am thankful for (yes, it's back).

Hulu.

Best friends who bring goodie bags full of necessities.

Pee Wee Herman on Hub on a Friday night.

iTunes and audio books.