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.

Surgery day

So today was the big day.  To just jump in and tell you where we are would be unfair to you, my reader.  Therefore, I would like to start with my evening prior to surgery. 

I know that I am skipping several days and I want to apologize.  As you can imagine, it has been a very emotional time.  However, there is nothing that I have gone through emotionally, that I have not shared previously.  No new emotions that I have dealt with.  I feel like you are well versed in my roller coaster of emotions already.  However, I will say that Wyatt has been getting better.  This has been difficult because I had hoped that the trach would not be necessary.  But, in the end, the trach was what was needed.  Right now, I feel good about our decision, but I will let our story unveil itself. 

I will start by saying that earlier this week we were moved from the red pod to the green pod.  I kinda threw a fit.  It's really hard living in the hospital.  I told them that because of this, when we get attached to a room, it's like you put roots down.  And then when you move, it's like you are completely uprooted and it's hard to readjust.  However, after I threw said fit, I went to my new bathroom.  Can you believe it was clean?  It's amazing, I know, but it is.  No bodily fluids on the floor!  It's a Christmas miracle I tell ya!

Last night I was restless.  Wyatt and I rocked for a long time.  But, when he had been asleep for quite some time in my arms, I laid him down in hopes of getting sleep myself. 

I laid down about 11:30 and was soon asleep.  Now, let me say that in all of my 56 (give or take) nights spent here, I have never had a bad dream.  Typically, I am a dreamer of only pleasant dreams.  It's pretty unusual for me to have a negative dream.  Needless to say, last night broke that record.  In my dream, I was laying in my makeshift chair-bed.  Yes, it was one of those dreams where you dream you are awake.  So, in my dream I remember thinking, it's so sad to me that so many children have died here.  It was seriously breaking my heart.  Just then, I looked down the hallway and saw Michael Jackson walking toward me.  Ok, you can stop laughing now.  It was Michael Jackson, seriously (make sure to stay tuned to see how this comes into play later).  But in my dream, it was his ghost.  Oh, and I knew it was him because he had on the black hat that he wore in the 80's, back when he still had some of his original nose left.  Anyway, back to this dream.  So, after I saw his ghost, I heard Wyatt being fussy so I got up.  I'm still dreaming mind you.  As I was rocking his crib, I looked behind it to my makeshift bed, only to see a ghost throwing my blankets around.  Freaked out, I started screaming at it.  In the end, I woke myself up whining.  I was mortified.  I looked at the clock and it was 12:15.  I went down the hall to the potty and back to attempt sleep. 

I went back to sleep, dreamless this time.  However, about 4 I heard respiratory giving Wyatt his treatment and I woke up.  Knowing what this day would hold, I prepared to be up for the day, a cup of coffee later and I was good to go.  Wyatt was awake so we talked.  It's pretty amazing talking to my boy.  It's like he honestly understands every word I say.  His eyes are the most incredible creation on Gods earth.  Honestly, when you talk to him, he meets your gaze and holds it until you break it.  Rarely is he the one to break it.  Around 5:30 I decided I wanted to hold him, knowing that it would be days before I was able to again.  We rocked for a long while.  All of the doctors did their rounds, all the while I held my angel.  At shift change, our new nurse needed to do his assessment and my tail was asleep so I put the boy back.  We were told surgery would be at 10:15.  After the nurses assessment I was a little emotional.  For some reason, I still feel the need to apologize to Wyatt.  I feel like for some reason that all of this is my fault.  Or maybe it's because I can't do anything to fix it.  I stroked his sweet neck again.  I drank in his cry.  I wanted that cry to be in my soul.  I wanted it to marry into me so that I would never forget his sound, even if it were gone for a day I wanted it to be burned into my soul, never to forget.  Anyway, my emotions we contained after only about 10 minutes, which all in all is pretty good for me.  Around 9 the nurses came to get our guy.  They were ready for him early (which in hospital standards is totally unheard of).  Mike and I went down with him.  All morning, for the most part, I had felt at peace with things,  which I had asked for in prayer.  I could do this.  We gave hugs and kisses and Mama stayed strong.  I mean, don't get me wrong, it was crazy hard knowing that this was a huge turning point in all of our lives, but I did really well, considering.

Mike got our breakfast and we waited.  They called about 30 minutes in to let us know that they were finished with the scope and they had just started the trachtrach would be removed.  What wonderful news. 

Wyatt was taken straight back to his room.  However, knowing how things work around here, we took our time in the Friendship Shop downstairs.  My mom had previously purchased a stuffed Woodstock (from Snoopy) toy for Wyatt that he loves.  They also have Charlie Brown and Mike really wanted Wyatt to have the pair.  So we spent time shopping and basically waiting for them to get him resituated.  It felt nice to have a weight off of my shoulders.

Now for the strange part.  We came back upstairs to go back to his room.  When you get to any given floor there are pods.  Each pod has it's own key pad to get in visitors, parents and anyone else who isn't an employee must buzz the front desk to get permission to enter.  While waiting to be buzzed in we overheard a family asking where their child was.  The lady at the desk couldn't hear what the name of the child was and I overheard he say "what is the name"?  To which the family replied "Jackson.  Michael Jackson."  I bet you think I am making this stuff up.  I promise to all that his holy I am not.  Ask my mother.  I had told her the story an hour earlier and we laughed because I had a dream about Michael Jackson.  As soon as she heard the name of the patient, she looked at me in disbelief.  It was crazy.

When we got the Wyatt's room, I had a hard time seeing him with the trach.  It was an initial shock I think.  But, after a few minutes, I was totally ok with it.  I was able to see his beautiful face again.  And, it was especially nice to see that he was not paralyzed.  It was my baby again, well almost. 

Lots of doctors came in and out.  And along the way, we lost my mom.  She couldn't take the bells and alarms going off and went back to our house.  I think it was for the best for all involved!  :)  About 1 or so I had to sleep.  So, I laid down in the chair.  Mike joined me, kinda (he propped himself up on the chair).  I was awake and I heard someone talking.  I looked over and saw sweet Beth and Aaron Allison.  What a wonderful surprise.  We were blessed so blessed to have them here to pray with us.  They are so special to me.  We had such a wonderful visit.  At this point, Wyatt was doing incredible.  And when I say incredible, I mean incredible.  He was awake and looking around, kicking his legs, but didn't act at all in distress or pain.   After they left, Mike and I went to grab a late lunch at Calhoun's. 

So, I am going to stop telling our story for just a minute to share a seriously hysterical happening during our visit to Calhoun's.  And I promise, I am NOT making any part of this up.  Nor am I exaggerating even an ounce of it.  It was seriously that good!  So, while Mike and I were waiting for our lunch, a college aged girl was seated just behind me.  I could hear her on her cell phone.  When the waiter went to take her drink order, I heard her end her call.  And I promise, even thought it sounds like I was eavesdropping, I wasn't.  I heard the waiter and the girl talking, but wasn't listening.  I then heard her say that she didn't eat beef because she felt bad for the cow.  She then went on to say that she didn't drink milk either because she felt bad for the cow's utters.  I swear she did.  The waiter then asked her if she was a vegetarian or vegan and she said no she just felt bad for the cow.  So our lunch came and Mike and I ate.  The waiter went back to the girl as he chit chatted with her about what she wanted to eat.  And I swear to goodness I heard her order a steak!  NO JOKE!!  At this point, I was hysterical.  I still wonder if she knows that steak comes from a cow.

So back to our day.  When Mike and I got back from lunch (and West End traffic at 4:30) Wyatt was doing great.  He looked great and he was really happy.  As the afternoon went on, he kicked more and more.  Not an "I'm hurting" kick, but a "I want to play" kick.  He's pretty notorious for it.  So, the nurse obtained an order to give him more meds.  Didn't help.  So she got another order.  Didn't help.  She asked for his Versed back on drip.  Didn't help.  She finally had to call the doctor and ask for an upped dose.  Now mind you, he had received like 3 doses of Adivan, not to mention his Methadone and now he was on an upped dose of Versed on drip.  This should put an elephant down.  He was still kicking.  Now mind you, in no way did anyone think he was in pain.  He seemed totally and completely happy.  However, we did worry that he was turning his head too much, thus the medication increase.  The doctor ended up giving him an additional dose of versed just to calm him enough to sleep.  And sleep he did.  Actually, until about 30 minutes ago, he was still asleep.  Now he is awake and kicking, but not moving his head.  So we can live with this. 

I can see how much better he is breathing and how much better he seems to feel.  The doctors even pointed it out.  It's pretty remarkable.  It is this alone that has shown me that I have made the right decision.  It's hard to know sometimes that we make the right decisions in times such as these.  It's even harder when these decisions are made in the best interest for your children.  And harder even still when something goes wrong and you feel totally responsible.  In the end, I do feel as though we made the right decision for our boy.  All of the hard decisions in this I feel were the right ones.  I know that what we have been enduring is preparing us for great things.  I know that my boy will go on to be something great.  And even if he doesn't that's ok too.  I don't need him to be great in the eyes of others because in my eyes, he is the greatest.

Observations of an ICU shutin

Ok, so obviously living in the hospital is not ideal.  However, it's rather amusing people watching.  There are a few things that I have learned for certain during my stay in room 5421.  Below is my diatribe of such.

First I would like to touch, if every so briefly, upon the apparent lack of respect for public space.  Yes, I am again referring to the bathroom.  I have had to complain three times now about bodily fluids being in the floor of the restroom.  Don't even get me started on this again.  So, two days ago, at 2 in the morning nonetheless, I went down the hall to use the little girls room (or little boys room depending on which gender is using it at any given time).  Now, at this particular moment, I was very emotional and sleep deprived, so imagine how irritable I was anyway.  I tried the door and it was locked so I watied.  I really needed to go.  I watied about a minute or so and I heard the door unlock, then open.  I quickly realized that this person had neglected to wash his/her hands.  Then I saw one of the dads from a neighboring room.  ICK!  Not only was it a man (it's somehow much nastier when it's a man who doesn't wash his hands after urinating, you can imagine why) but I have seen this guy every day.  Anyway, I didn't have time to be disgusted by his lack of personal hygiene.  I went in and turned on the light.  Then, to my disgust, I realize that not only had Daddy Nasty Hands not washed, but he had also not flushed the toilet - or raised the lid for that matter.  I then freaked out a little by screaming, "you have to be kidding" as loud as I possibly could.  Grabbing a paper towel to open the disgusting door handle contaminated by Daddy Nasty Hands' germs from God knows where, I hurried down the hall to a suitable alternative.

As I could go on for hours as to the disgusting restroom conditions here in the red pod of the 5th floor, I will spare you the stomach wrenching details.  You ask yourself, "can it really be that bad."  Yes.  Let me just tell you that it can, and is that bad.  Trust me.

I will now touch on what I like to call The Wide World of Twins.

I have always heard that everyone in the world has a twin.  Melanie swears that she saw mine somewhere in Atlanta.  Rest assured that it is somewhat true.  Some of you reading this blog may find it very interesting that your twin works on the fifth floor of Vanderbilt Children's Hospital. 

One of the pharmacy techs looks exactly like my sister in profile.  It's scary really.  The first night I saw her she caught me staring at her.  I was a bit embarrassed, but smiled it off.  My mother has too seen her and agrees that she is indeed Andi's twin from profile.

Other twins are shorter or taller, younger or older than their counterparts.  For instance, I shot a wedding a year or so ago with Deana, of her now cousin by marriage, Kristy.  Apparently Kristy has a twin.  A much shorter girl, but her exact twin in every other way.  I mean, right down to the illuminating smile.  It's uncanny really.

My cousin Anthony has an absolutely beautiful girlfriend named Tiffiney.  She is stunning really.  I once questioned why she was with Anth.  Let's be honest, Anth is a super guy and an incredible father and pretty cute, but Tiffiney is gorgeous.  Anyhow, Wyatt has an RT who is seriously her twin, including nose ring.  I even went so far as to e-mail Anth to see if she indeed had a twin who just so happened to work here.  No such luck. 

Other notable twins are Paula Collins, Jodi Puff and Mr. Bean.  Strange, I know, but true.

Now, let me just say that the job of a care partner is never ending.  I appreciate what they do as much as the nurses.  However, is it written in the care partner handbook that they all have to wear the same, stinky cheap, perfume?  Or, is the bottle given to them by human resources when they first start this job?  Maybe it's in the break room, hidden somewhere only to annoy me.  Petty, I know, but it's seriously stinky.  Oh, and did I mention that they not only use it, but bathe in it.  It's terrible! 

So let me talk about my child for just a moment.  I know that everyone is proud of their children so I will boast about mine.  Wyatt loves music.  I am convinced that it is much more than it just being born in him, but that I instilled his love for all music while I was pregnant with him.  When most people would ask if I talked to him, I said of course, but I really didn't that much.  However, I did sing to him, a lot.  Now, if you know me, you know my taste in music is very broad.  If we were to look at my iTunes right now, you would find anything from Kings of Leon, Oklahoma!, Michael Buble', Richard Marx, Sir Mix A Lot, Anointed, Def Leppard, Adele, ABBA, Meatloaf, Journey, Michael Jackson, Neil Diamond, Joss Stone, Prince, Billy Joel, Aerosmith, Marc Broussard, Bonnie Tyler, Alison Krauss, Jim Croce, Grand Funk Railroad, Keb Mo, Switchfoot, Bette Midler, The Beatles, Blues Traveler, Elton John, Color Me Badd, Fleetwood Mac, John Denver, Tony Bennett, and the list goes on and on.  Seriously, I can keep going for days.  But, I feel like my music taste is all over the place.  With that being said, I listened to so much stuff when I was pregnant that his taste too became very broad.  So, when we were first in here and Wyatt would cry and be fussy, I would sing to him.  However, I did not sing the traditional lullabies to my baby.  My staple lullabies are Tiny Dancer, I Think It's Going to Rain Today, Down to the River to Pray and Fire and Rain, just to name a few.  Out of all of these, he has always responded the best to Fire and Rain.  So, when he came to the PICU I told the nurses for his preference for James Taylor.  They started playing the James Taylor station on Pandora for him.  And honestly, I am not exaggerating at all, he responds so amazing to it.  He seriously calms down and hushes.  It's so soothing to him.  I don't know if it's the tone of his voice, but it's really incredible.  He also likes Glee and American Idol.  It's the singing, I am convinced.

Now, let me just tell you that if you are a nurse, please be confident in what you do.  Not only can I sense it, but Wyatt can too.  We have had a few nurses who were new or just not confident in their jobs, and we have not been happy with them.  Not that I am saying that they did a bad job, but they made me question what they did. 

So, can I just tell you how sick of Taco Bell, Pizza Hut and Subway I am?  Mike and I try to go to different places for dinner, using the gift cards given to us by amazing friends, but there is only so much one can change it up with.  To the point that sometimes I feel like I could eat an entire head of lettuce, just for something fresh.  Oh, and you can't have food in the PICU rooms.  So, I have to sneak in snacks.  I feel like I am breaking a law sometimes.  But thank goodness Blue Monday's fit nicely in my purse so that no one can see them.  I am however "taking the sweet a**" as my Papaw use to call it.  Maybe I should cut back a little.

The hospital has a channel that is instrumental music of different sorts played over videos of serene landscapes.  Some of the videos contain animals such as elk, bear and ducks.  The nurses affectionately refer to it as the creepy baby music channel.  I turn it on for our boy during most of the day and every night as we go to sleep.  Some of the time it's just for the video and I turn the volume off and listen to the aforementioned James Taylor station on Pandora.  I have watched/listened to this station and its music now for 54 days.  At any rate, it's pretty bad.  Actually, it's so bad, I texted Becky the other day.  My text asked "If a bear swims in a lake, does it use the doggy paddle?"  To which she replied, "You need to change the channel."  So apparently I watch it a little too much.

Now, I'm pretty sure that this blog was pointless and boring.  However, it's nice to share my boring day to day experience with you all.  All I can say is thank God for my laptop and lots of books and magazines.  They help me stay sane.

Grateful

As I write this, my heart is breaking.  No longer for myself or my son, but for the family across from us. 

Earlier, a young girl walked by our door.  She looked in, making eye contact with me and continued on.  A few minutes later, she came to our door.  She asked was was wrong with Wyatt.  I told her that he had Poland Syndrome and that he was going to have to have a trach.  She then said something that has ripped my heart into pieces.  She said that the child she was there for (I am assuming she is the child's aunt) died a few days ago.  She said that he was clinically dead for 40 minutes and they "brought him back."  She said that he was brain dead and that he would be passing away in the next few days.  I could not apologize to her enough.  She said that she would pray for Wyatt and then left.

I feel like such a terrible person.  Here I am, complaining about a trach when I am still going to be able to take my baby home.  This family will never be able to take their baby home.  They will never be able to see him grow.  How selfish of me?  How incredibly shallow of me?  All I can think of is how Wyatt will not be able to perform a few milestones as a normal child, with the knowledge that he will eventually come off of the trach.  How can I be so mindless of others?  How can I complain when Wyatt gets to come home with me?  This family is losing their child and I am crying for a simple surgery?  A surgery that will allow him to breathe better and ultimately grow and be better?  I feel like if this family can endure their struggle, which is much more heartbreaking, then I can endure this trach. 

As Wyatt and I listened to James Taylor (Wyatt's favorite music), I saw a priest leave the room of this sweet baby.  Have I mentioned that this child looks to be not much younger than Wyatt?  I couldn't help but get emotional.  When Mike's dad was in the hospital, I remember the priest coming in to give the last rites over Sal.  As I am not sure this is what was done in this instance, my mind can only go there.  I keep gazing into Ashton's room.  All I can see is the clock, but the knowledge that such suffering is going on in there is breaking my heart.

I beg of you, please pray for the family of baby Ashton.  They will be enduring so much in the days and weeks to come. 

 I will post more later this evening.  So much is going on in my pea brain.  Some of it is funny, it might be the insanity of staring at these four walls now for 52 days.  But, right now, I just ask for your prayers for baby Ashton's family.

My spirit is broken

I don't know how else to describe it.  I feel broken like I have never felt broken before.  I suppose the trach shouldn't have hit me as hard as it has.  I knew that it was coming.  The doctors have warned it now for weeks.  But, I had faith in miracles.  Faith that it would all be ok.  But now, as I sit here, I come to grips with reality.  The reality that what I want and what God has in store for us are not one in the same.  And all of the praying in the world will not change that.  I try to have faith that God will provide, but my spirit is weak.  It hurts.  I spoke with the doctors a bit this evening, allowing my emotions to get the best of me.  I told both Dr. Lovvorn and Dr. Goudy that this was a grieving process for me.  Tomorrow I may be a brand new person with a whole new outlook, but today, I grieve.  I told them that I feel as though I am grieving the death of a child so that I can prepare for the birth of another one.  I don't mean this literally, but it's the best way I can describe it.  I feel like the child I brought in here will not be the child I take home.  We will have new challenges in our day to day life.  However, it is not the the day to day challenges that bother me.  I know that I will be able to take care of Wyatt the way he needs to be taken care of.  I know that I will be able to tend to his medical needs the way he needs.  I know that I will be able to love him as if this surgery were not imminent.  It's the little things I spoke of earlier that I morn for.  I morn for his laugh, his cry and his babble.  I morn for the innocence that will be taken from him.  No one should have to endure such a hardship.  No one should have to endure such pain.  I am trying so very hard to hold to my faith strong in this time.  But, it's hard.  Please do not judge me for my waiver as the term waiver is not accurate to how I feel.  Please do not tell me how I am wrong for I do not know how else to explain how I am feeling.   I don't question God himself or his existence; for this I know to be true.  I question why my child.  Why is this fate upon my boy?  Why, when I have prayed so very hard, are we facing these battles?  I came humbly to you Lord.  I have cried at your feet, on my knees, asking for your healing hand.  Lord, I feel broken.  Lift me Lord.  Hold me because I cannot hold myself any longer.  Please, help me to see the grand things you have in store for Wyatt.  Please Lord, help me to know that this is temporary and in the end we will all be much stronger people because of it.  Please help me to see these things, for right now, I feel lost in so many ways. 

I do not know when this surgery will be or have any additional information.  Mike and I meet with both Dr. Lovvorn and Dr. Goudy in the morning.  We will have a chance to ask questions as well as get information on the risks and benefits.  But right now, I grieve.  I grieve for my baby. 

Day 49

I apologize again for taking so long to update you on Wyatt's progress.  But, again, it has been a roller coaster of emotions for me lately and sometimes I just don't want to think about it.

As most of you know, they took out the breathing tube on Thursday at noon.  There was much debate on whether they were going to put him on By PAP or on CPAP.  Ultimately, they decided to put him on CPAP because the By PAP mask didn't fit correctly last time, causing too much of a leak to work.  I spent the first two hours never taking my eyes off of his monitor.  For a while, it was perfectly fine.  His oxygen never went below 98, but it seemed he was breathing very quickly.  I was reassured that it was because he had just been extibated and was still in stress over it.  They let me hold him.  This event in and of itself should have been an incredible one.  However, Wyatt was so angry that he kept bowing his back and really thrashing.  After about 10 minutes, the nurses put him back in his bed.  It was determined that he was having withdrawals from his medicine.  He had been on a drip of Versed and something else for most of his time in the PICU.  So, Monday or so of this week, they started to wean him off of those meds to meds that aren't as strong.  To spare you the long story, this withdrawal was because he was over 2 hours late for the Methadone.  Did I mention that during this time his heart rate went up to 204?  Yeah, so lets just suffice it to say that I was freaking out a little.  However, once they gave him his meds, he was perfectly fine.  He relaxed and went to sleep and his stats looked great.  I started thanking God for the healing that was taking place in my angel.  For an hour, I did nothing but thank and praise God. 

The next hour or so I just asked God to take this minute by minute.  I didn't want a giant or drastic change all at once, I just needed him to keep his stats up, minute by minute.  As the day went on, I felt good about the progress Wyatt was making.  I was still nervous, but it was hard not to smile at the thought that my angel was doing such a great job.  As I went to sleep that night, his stats looked great and they had even started to lower his oxygen.

On Friday, the doctors felt good about how things were going.  They decided to try and drop his pressure in hopes of weaning him off of CPAP entirely.  Needless to say, it didn't go well at all.  His respiration rate was faster than ever and his heart rate was up, again.  It was so difficult to see my son in such distress.  I just wanted them to do something.

The doctors were afraid that he had fluid on his lung again.  So, they did another x-ray.  It looked like fluid on the lung, but they also want to do an ultrasound.  The ultrasound showed that the lower part of his lung had collapsed.  But, the good news was that there was no fluid on his lung, so he wouldn't need another chest tube.  Dr. Rhodes said that they were going to try everything to keep from reintibuating him. 

The doctors decided to try some new breathing treatments to reinflate his lung.  Please let me apologize for not knowing the exact name of the treatment, but I can tell you it sounds like a train.  From what I understand, it breaks up the secretions in his lung.  It uses a saline solution to absorb excess fluid as well.   The treatment includes very quick bursts of air  followed by slower bursts.  This goes back and forth for fifteen minutes.  They then deep suction (which he HATES) the secretions out.

The first treatment didn't go the best in the world.  He threw a fit the entire time.  Once it was over, he proceeded to throw a fit for the two hours following.  When they came in to do the second one, he was fit to be tied.  These treatments last fifteen minutes.  After the treatment, when they start the deep suction, he whimpered, and then went to sleep.  He was exhausted.  God love it.

Almost immediately, there was a difference in his breathing.  It wasn't as quick and not nearly as shallow.  The doctors felt good that this was beneficial in getting his lung reinflated.  So, their plan was to continue this at least through tonight.

As of right now, Wyatt is receiving these treatments every four hours.  They seem to really be helping him.  They are apparently very exhausting because he has been sleeping more. 

I apologize for not being as detail oriented in this blog as I have been in my others.  I have felt out of steam as of late.  I feel emotionally and physically exhausted.  I am scared of what the future holds.  I am frustrated and grateful at the same time.  Frustrated because they still don't know how to treat Wyatt and grateful that he is receiving such good treatment.  An oxymoron, I know.  I know that Wyatt is a very unusual case.  I understand that he is not textbook and going to such references do not apply to my baby.  I feel like the doctors are at a loss as much as I am.  Things that should work for other children, don't work for him.  Dr. Lovvorn came back from his vacation on Friday.  He told me that they are not ruling out the trach.  This is so disheartening.  I know that they will do whatever is possible to make my baby better, but at the same time, I don't want them to jump to make a decision just for the sake of a decision.  But at the same time, I know that Wyatt can't grow up here.  He has spent 3/4 of his short life in a hospital.  I hate it so much.  But, what do I do?  I do the best I can. 

I want to take this opportunity to thank so many people.  First, I want to thank you, my reader.  I know so many of you look forward to the updates to see how my baby is doing.  It means so very much to me that you remember Wyatt and our family in your prayers.  I know that there is much more going on in this world to worry about, but that you choose to think about us warms my heart.  Second, I am sorry that I haven't replied to every e-mail or Facebook post that I have received.  But, please know that I read each of them and appreciate each one of them.  I want to thank Jill Reynolds Williams, Jennifer Greathouse and Shelly Greathouse Crisp for the Edible Arrangement.  Not only was is it incredibly thoughtful, but it was delicious and beautiful!  You will never know how much it meant to me.  I want to thank everyone involved in the photography fund raiser for our family.  I never in my life thought that I would be in a position to need something like this.  I have always been independent financially and never thought I would have to rely on others for my family's financial needs.  However, I've come to a place where I know that Wyatt Paul is the very most important thing in this entire world to me.  And, with that, I will do whatever it takes to ensure that he is taken care of.  So, if that means that I have to receive help from my family and friends, then that is what it means.  But, please know, that it means more to me than I will ever in my life be able to express.  Lastly I want to thank Aaron Allison for coming to the hospital to pray with me.  It's incredible how God has put people into my life when I need them the most.  Aaron and Beth are in my life because I need them so very much spiritually.  It's so hard right now not to question God.  I know that we aren't suppose to, but it's so hard not to in times such as these.  That's why it means to much to me that Aaron and Beth are there to help me stay centered on God's plan.  Whether they know it or not, they bring a spiritual peace to me. 

As I close tonight, I want to apologize again for not being as well written as usual.  I just feel tired in so many ways that I cannot being to explain.  I need rest, not only physically, but emotionally and spiritually.  I just need to feel confident that my baby will be ok when reality is that I am not sure.  I just want to have solice knowing that he is going to be fine.  I'm not sure I have that right now.

Things I am thankful for.

Seven Layer Chocolate Cake from Noshville.

Friends who continue to lift me up when I need them the most.

A hot shower.

My mommy.

Day 45

Let me begin by saying how therapeutic my "Day 44" blog has been.  As I realize that most of what I said was in a rant form, it was so nice to just get it out.  To type on wet keys and to see through squinted eyes full of tears.  I needed it.  I needed the world to know what I was feeling.

Today started with much relief and stress.  I was able to get one of the coveted sleep rooms last night.  I took it not for the actual bed to sleep in, but rather for the clean shower.  During my stay in this room (room number 7 might I add) I had a long talk with God both last night and this morning.  As I always ask for His healing hand on Wyatt, but this morning I also prayed for myself.  I prayed that if His will was for Wyatt to have this trach, then I prayed that He could help me be the strength that I needed to be, to be able to deal with it.  I prayed that He guide both Mike and I as we make this terrible decision.  I prayed that He help me be able to tend to and take care of all of the needs that may arise during this time.  I prayed that He lead me to be the mother that Wyatt needs.  I also prayed that He help me see the positive in this time of darkness.  Coming back to Wyatt's room, I felt a sense of peace as well as fear.  Peace, because I knew that regardless of what needed to happen, I could deal with it.  I am a mother, and mothers in general do what needs to be done.  It's later that we are able to fall apart.  I felt fear because I knew that I was going to have to witness Wyatt's last chance before this decision.

I imagine this fear to be much like someone who is in front of a firing squad.  It's like you know what is going to happen.  You want it to hurry and be over with, but in the end, you know what the result will be.  It's hard to be happy for the result, but you just want it over with.  The easiest way to describe it is in this way.  I wanted it to just happen already, but I didn't want to witness the helplessness I would feel for not being able to help my baby.

Wyatt was asleep when I got in here.  Our night nurse, Florence (who I adore) was already gone.  Yes, I over slept a little.  Our day nurses were Allison and Cathy.  They said that Florence said that he had a good night and that all of his CPAP trials went well.  Good news.  At about 10 the respiratory therapist came in.  I was curious as to why she was there.  I knew they weren't going to extibate him until the afternoon.  When I asked if they were going to do a CPAP just before extibation, she said yes.  I was a little upset, to say the least.  I felt like he was being set up to fail.  At any rate, he failed this CPAP.  I was heartbroken.  It was like a dagger in my heart.  But the doctors came in and talked to me.  They wanted to give Wyatt another try.  So, Dr. Bridges (who I have decided that I really, really like, by the way) said that he wanted to give Wyatt every chance possible to succeed.  He said that they wanted to do CPAP trials throughout the night and try again tomorrow. 

While this is good news and gives me hope, I have another day of fear.  I know that there is a very great possibility that he will fail extibation tomorrow.  And while I still want to have hope that he will pull through like a champ, I don't want to set myself up for heartache.  I must be realistic right now.  I must be prepared for what is possible to come.  I cannot allow myself to live in a fantasy world full of flowers and rainbows.  It's time to play grown up, regardless of how hard that is going to be.  I have to be strong for this child.  I have to be strong in order to get ready for the care that he will soon need.  

So, I have come to the reality that my baby will more than likely need a trach.  I can accept it.  I have asked the family resource center to get me some materials on it so that I can be well versed in it, prior to surgery.  I want to know it inside and out.  I want to have educated questions when talking to the doctors.  I want to know that this is the right decision for Wyatt.  I need to know that there are no other options for my baby.  I don't want to go into this blindly and become consumed with something that I never saw coming.  

As a side note, Florence, our nurse again tonight, told me something last night that has helped me to process the fact that I will not be able to hear my baby.  She said that some families start teaching their children sign language as they would teach them to talk.  This way, they have a form of communication until the trach is (if the trach) is able to come out later on.  For some reason, this concept has really brought me solace in all of this.  Knowing that there is a form of communication for my child and I.  Even though I know he can hear me, there is a form of communication out there to help me. 

Now, I know that I touched a little on the fact that later on the trach may be able to be taken out.  The doctors, of course, can not tell me with 100 percent certainty that this will take place.  But, they feel like as Wyatt grows and gets bigger, so will his airway and muscle tone, allowing him to breathe better.  This also gives me hope.  I don't want to "hang my hat" on this fact, but honestly, I think this has helped me to get through this.  Knowing that we have a goal to shoot toward.  Something that we can work for.

I also want to say that no one should ever wish someone to grow up, especially a mother.  A mother should never want her child to hurry and grow up.  In many ways, I do.  Because if he would just grow and get bigger, I know that many of the challenges he is facing would all be behind us.  I don't want to rush his milestones, but lets be honest, will he make many of these milestones with the trach?  How does the trach harm his walking or even crawling?  Have I mentioned that Wyatt wouldn't just have to have a trach, but will have to be on a vent?  Yeah, so how will that work?  We will be home bound, for the most part.  He will have limited interaction with other children for risk of illnesses.  He won't talk like a regular child, he won't laugh (don't even get me started on this again) and the list goes on and on.  I have so many questions and for the most part, the doctors have been hesitant to talk with me about the trach.  I honesty feel like they too want Wyatt to succeed.  They want him to be a success in all of this as much as I do.

I don't want this post to sound like I have become hardened since last night's blog, because God knows I haven't.  I've cried several times today, on many doctors.  But in so many ways, I want to be ready for whatever it is that we will be facing.  I don't want to be blindsided by anything.  I want to be ready and informed.  I want to be a good mother who has all of her facts prior to this major life change.  Lets be honest, it's not just poor Wyatt, but both Mike and I who will have a major life change.  And don't think for one second that I am upset by this.  If I had to shave my head, wear a burlap sack, eat liver and listen to Yanni for the rest of my life in order to make sure my son was taken care of, I would, all while wearing a smile on my face.  I will do whatever it takes, no matter what the cost, to make sure my child was taken care of to the best of my ability.  And I want to be the one who takes care of him.  I want to be the one that makes sure that he is getting what he needs, be it his health care, emotionally or otherwise.  I don't feel like I deserve any accolades for this because I am his mother, and that's my job.

I'll end for tonight, mainly because I am tired.  It's been an emotional roller coaster, more so than most days.  And I know that tomorrow will be much of the same.  But I want to leave you with this.  Shortly after Wyatt was born I had an epiphany.  It was one of those moments when you just know something so deep in your core that there is never anyone on the face of this earth that will ever be able to convince you otherwise.  My epiphany was that I knew my purpose in life.  My purpose in life was to be Wyatt's mom.  God put me on this earth to raise Wyatt.  To provide for him and nurture him.  To love him and teach him.  If I never do another thing so long as I live, I will always know that I am fulfilling my purpose in life, being Wyatt's mom.