Day 44

I know that it has been a few days, but honestly, I have been really sick and all I want to do is sleep.  On top of that, emotionally, I have been totally unstable.  I apologize to all of you and I know you want and deserve updates, but I've seriously feel like I have fallen into a big black hole.

Saturday was a pretty good day.  Wyatt was doing great on the ventilator and was breathing like a champ during his CPAP trials.  The doctors talked about extibation, but didn't want to rush to anything.  Of course, Saturday nights are my nights to spend at home.  So, when Mike got here, I went home for some much needed sleep.  Thank God for NyQuil.  I slept until 11 the next day!  Unheard of as of late.  So, when I woke up I called Mike to check on the boy.  He had talked to the attending, Dr. Bridges, and he felt as though Wyatt still needed some time.  Mike and I were both ok with this decision.  I mean, the poor kid has had 2 major surgeries in the past 2 weeks.  Let's give him a break! 

Bubby John and Becky made my favorite, chicken casserole, for dinner.  After another nap (yes, I slept the day away), I went back to the hospital.  It's been especially tough for Mike and I during this time.  We barely see each other and when we do, it's for as little as an hour a day.  He's so super amazing in all of this, but sometimes I don't think he gets it.  We have been together long enough for him to know when I need a hug, and when I need left alone.  God love him.  Saturday I hurt his feelings because I was not in a hug mood.  I didn't mean to, I really didn't.  But, when I am on the verge of being emotional, and someone tries to hug me or pat or soothe, it sends me over the edge.  Sometimes, I just need to be left alone so that I can gather myself and regroup.  I feel bad because I know that he was just trying to make it better, but at that moment, it is not what I needed.  Mikey, if you are reading this, I am sorry.  I love you so very much and I know that you were just trying to make it better.

So, around 10, Wyatt was asleep and I settled in for the evening.  The resident, Dr. Rhodes came and said that she wanted to ask me a question.  She said that she felt as though we were allowing his lungs to become weak while on the vent and that she wanted to try and extibate him. Ok, wait a minute, didn't Dr. Bridges, the attending, just say only hours before that we wanted to let him wait a little?  Needless to say, they extibated him to the CPAP.

For an hour, Wyatt hung in like a big boy.  He was breathing so well.  But, as the second hour drew on, he became tired and started dropping his stats.  It was especially hard seeing my child basically struggling to breathe just so they could see if he could.  Needless to say, they decided that they needed to reintibutate him.  My heart was broken.  Not only did I feel like he wasn't ready to begin with and I wasn't being listened to, but now I felt like they were going to want to talk about the trach even more.  I stayed up with him until almost 4 in the morning.  Dr. Rhodes apparently saw how distraught I was and told the nurse to be sure to let me hold Wyatt.  She knew that it had been nearly 3 weeks since I had been able to hold him.  I held Wyatt for over an hour.  It was incredible to hold my baby again.  It felt as though he had grown a foot since I last held him.  Somehow, when you hold your child, all is right in the world.  All worries go away.  The only thing that matters at that very moment is him and you and that very moment.

Monday was an ok day.  Dr. Bridges, the PICU attending (whom I am not sure whether or not I am a fan of) talked to me for a long time.  He said that he wanted ENT to come take another look at Wyatt's airway.  He said that he didn't want to miss something.  He also said that he didn't want to jump into a trach if that wasn't the answer.  Dr. Bridges had ENT come do a bedside scope.

Now, let me just say that on Friday, both our surgeon, Dr. Lovvorn and our ENT doctor, Dr. Goudy, both of whom we have developed a great relationship with, are both on vacation this week.  It seems that whatever school system their children attend are on Spring break this week.

So, Dr. Wootten, who is very handsome might I add, came to do an in room scope.  It lasted only a few minutes and he said that he felt as though Wyatt's trachealmalysia wasn't as bad as first through.  Score!  That's some great information!  But, they wanted to a more in depth scope in the OR today.

So, Wyatt's scope was set for 7:15 a.m. this morning.  We were originally told it would be around noon so I told Mike to run his errands and then come up.  Needless to say, we weren't given the new time soon enough for Mike to get here.  I didn't mind being alone for the scope because we have been through this before and I know that it isn't a big deal.  So, down I went around 7:15.  And I sat, and I sat and I sat.  No one ever came out to give me an update.  So, angry Mama Bear came back around 9.  When I went to the front desk, they told me that surgery was over and he had been taken to his room.  Seriously?!?!  Are we playing this game again?  When I came to his room. he had been here for 30 minutes.  You have to be kidding me!!  After I threw my biggest fit yet, and apologized to by like 10 people, the doctors did their rounds.  I have found that it is a must for me to be available for rounds in order to get information that they may not feel I need to know.  I don't know if they take for granted that most parents don't want to know every little change, but I have been here 24/7 and have been a very active part in his treatment.  There was not new information at this set of rounds except that they want to try and extibate him again tomorrow and see how he does.

I took a much needed nap and woke to the sound of Dr. Wootten's voice.  He came to talk to Mike and I about Wyatt's scope.  He said that he indeed did have trachealmylasia and that he also had laryngomalasia (floppiness of the vocal cords).  He then said that he had developed tissue growth around his vocal cords that was probably caused by the breathing tube.  He said that he removed the excess tissue.  That along with swelling of the vocal cord and possibly restricted movement of the left lung are causing his inability to breathe off of the vent.

Today, Wyatt has had two successful CPAP trials and breathing like a rock star.  However, his breaths are shallow and very quick.  I dread the extibation tomorrow because I know that it will confirm what I already know; that Wyatt will need a trach.  I find it very hard to keep positive.  Knowing that my child will more than likely end up with a trach has deadened my soul somehow.

Earlier, when I sat down to write, this was something I had down.

"Today has been full of many epiphanies for me.  The first coming from an e-mail from Joel Osteen that I receive everyday.  I felt as though it was only for me.  Joel quotes Matthew 5:45 "... He sends rain on the just an the unjust alike."  He then goes on to say that storms in life happen to everyone no matter how good of a person you are.  That when these storms come we should use our faith to help control yourself rather than the circumstance.  He then said that God never said that we wouldn't have difficulties, but He did promise that we could have peace in the midst of the storms.  I can honestly, for the most part, I have felt this peace.  I know that so many of you have been praying for us, and I want you to know that I can feel the peace that you have asked God to send and I thank you from the bottom of my heart. " 

I felt it necessary to share this with you.  First, I want you all to know what it means to us to know that there are so many people out there who are "talking with God" about our son.  And we have felt the peace that comes along with that.  I also thought it important that you know where my heart was earlier in the day.  That I had a positive outlook on things.  However, the following is a mother pouring her soul out.  I have so many emotions right now that I don't know how to deal with them.  Please know that I just need to get some things out.  I need to get them off of my chest.  You are not obligated to continue reading.  Please know that if you do, the things you read may seem a bit harsh, but I need to get them out there.

As I know that God doesn't put more on us than we can handle, I'm not so sure right now.  I know that it is always darkest before the light.  However, at this very moment, I see no light.  No day in sight.  You see, I know that with this inevitable trach, I will never hear my son laugh again.  I will never hear him cry.  Oh how I long to hear him cry.  How I miss his cry.  As a mother all you want is to be able to make it better.  Well, I can't make it better.  I can't kiss it and make the pain go away.  I can't fix it.  I just want it all better.  I want to make it better and I can't.  I have never felt more broken before in my life.  I keep stroking my son's sweet neck, knowing that in a short amount of time, there will be a hole there in which he will breath from.  It kills my heart.  I keep apologizing to him.  Somehow I feel responsible for this.  For the future he will face.  For the struggles he will endure.  I just want to make it better and I can't.  I can't fix it.  There are so many struggles he will face.  There are so many obstacles he will face.  I am so angry.  I don't want to be angry, but I can't stop myself.  I am angry that this perfect innocent child will have to face so much in his life.  Angry that he has done nothing to deserve it.  Angry that this is his future.  I am also jealous.  So jealous of those who have perfectly healthy children.  I don't know if I will ever hear my child say that he loves me.  Do you know what that does to my heart?  A mother should never have to endure such a thing.  I will never be able to hold him against my chest.  I will not be able to feel his sweet head on my chest as I sing him to sleep.  These little things are impossible with the trach.  It really is the little things in life.  I just want him to be ok.  I want him to grow into a regular boy who wants to play baseball or football or get on stage and act.  I don't even know if that's a possibility right now.   I don't have lofty dreams for him anymore.  I don't ask that he become president or senator.  I just want him to be able to breath.  To run and play with the other kids.  To throw a baseball with his daddy in the front yard.  My son, my sweet son. 

Friday, day 41

Let me begin by saying that as of today, we have now been here for 41 days and my baby is now 15 weeks old.  It seems so unreal!  Keep in mind that out of those 15 weeks, only 4 were spent at home.  Poor little guy.

Today has been an alright day.  Very early this morning they attempted a CPAP trial.  Needless to say, it did not go well.  But, I was hopeful, knowing that surgery was less than 24 hours prior and he was still in pain.  So the plan was  for the CPAP trials to last for an hour and then give 3 hours rest after.  To sum it up, they have progressively gotten better.  He is able to sustain his oxygen saturation and his respiration rate has continued to lower.  They have weaned him entirely off of the pain and sedative drips he was on, now only getting the meds every 4 hours and they aren't nearly as strong as the others were.  So, we are moving in the right direction, as slow as it may seem.  I can deal with slow as long as I see progress.

Unfortunately, I am sick.  I guess it was inevitable being in a hospital full of sick people for so long.  The Minute Clinic said it isn't strep, but I still have to wear a mask at all times in his room, which I am totally ok with.  So, last night, I slept, no joke, a total of an hour.  Trying to sleep in a mask is non conducive to an actual good nights sleep.  Not only is it claustrophobic, but I have a problem breathing in warm air, and the only air in a mask, is warm air!  UGH!  It was terrible.  But, lucky for me, my incredible mom came today to sit with me today.  Since she was here and I knew if a doctor needed to ask anything, she was here.  So, I had a nice, long nap. 

Not a lot to report today other than I am trying to stay hopeful.  But, it's hard at the same time not to be scared to be excited.  Scared that if you get your hopes up that it will hurt worse when something else has to be done.  But, my super great nurse, Beth (who we have had for the last 3 nights) reassures me that everything is moving in the right direction.  It's the incredible people like this that have helped me in all of this!

Things I am thankful for.

Nurses like Beth who help me keep positive.

My mommy.  Enough said.

Women's Day magazine and the scrumptious recipes contained therein.

Say Yes to the Dress.  Shhhh, don't tell Mike that Wyatt and I watch it together.

Thursday. A day full of peace and love

I want to start by telling you about Wyatt's surgery.

Today Wyatt underwent diaphragmic plication.  During his aortapexy surgery, the nerve to the left portion of Wyatt's diaphragm was injured.  Due to this injury, his diaphragm was not functioning properly.  Our doctor gave him time in hopes that it would rejuvenate itself and resume function.  Because it did not, the diaphragmic plication was necessary.  From what our surgeon explained today, he actually took out a small portion of the diaphragm, stretching it tight and suturing it down (so to speak).  This was to allow his lung to expand as it should to dispose of gasses. 

He went down about 7:10 a.m. for his 7:30 surgery.  Nurses attempted to give Wyatt another IV so that they could give him blood, but failed to get a vein while in the room.  Let me tell you why it is that Wyatt needed blood.  Apparently at a certain point in a baby's life their mothers blood begins to leave their bodies and they begin generating their own.  Apparently this time in a baby's life is right around Wyatt's current age.  So, this coupled with the blood loss during his last surgery, his CV-something-another was low.  If he had not needed surgery today, they would not have given him blood.  At any rate, surgery began right around 7:30.  We were originally told that surgery would take about 3 hours.

As soon as they took Wyatt down, Mike and I went into the waiting room.  I was starving, so I sent Mike to grab some breakfast for us.  My mom and dad met him in the cafeteria and came back to the waiting room with him.  I had my fried bologna (totally bad for you, I know, but totally what I needed this morning).  During this time, I had my laptop to help waste time.  Music has really gotten me through all of this waiting, so I had to have it with me.  Around 9:30 we got a call for an update.  It was the nurse letting us know that they were closing up, Wyatt did really well and that Dr. Lovvorn would be out to talk to us shortly.  HOLY COW!!!  That was much quicker than I imagined.

We were ushered into a consult room to wait on Dr. Lovvorn.  My mom and dad came with us so they could get the information, first hand.  Dr. Lovvorn came in and told us that everything went beautifully.  Somehow we got off topic.  First, my mom told him how so many people were praying for him.  He was so thankful to learn this.  He said that he was a very prayerful surgeon and that it meant so much to him to know that people were praying for him.  Then, as if we needed further proof that God chose him to be Wyatt's surgeon, he asked where mom and dad were from.  When we told him, he wasn't familiar with the name.  I told him that it was approximately 2 hours east of Lexington.  He then said, "I was at Jenny Wiley State Park once.  Is that close?"  Seriously?!?!?!?!  Confirmation.

So, they brought Wyatt back to his room and mama got a much needed nap.  My mom and dad called to see if we wanted to meet them for dinner.  So, we went to Logan's for dinner; a very nice change from Pizza Hut, Taco Bell and Subway.  All day I've had a scratchy throat.  The kind of scratchy that I knew.  So, after dinner I went to the Minute Clinic at CVS.  I just wanted to see if I was ok to stay with my boy.  All in all, I don't have strep.  However, I do have a virus of some sort.  So, as we speak, here I set with a mask on my face.  However, I am still able to stay with my boy, which means the world to me.

Now to address the bigger topic at hand.  No one will ever know how full our hearts are today.  Starting at 6 a.m. this morning, the e-mails and Facebook posts started.  It seemed everyone I ever knew in my entire life, as well as many, many people I don't know, were praying for our angel.  Then, an hour into surgery I got on Facebook to check an e-mail.  It seemed that every profile picture I saw had been changed to my angel.  To know not only that people were praying for my angel, but would take the time to bring such awareness to his fight and to ask others for prayer, makes my heart feel as thought it could explode.  It is in a time such as this, I am so thankful to be from Eastern Kentucky.  There have been so many negative images associated with our home, that stories such as this never come into light.  It's community at its finest.  People spreading the word for the need of prayer for a child hundreds of miles away.  People we don't even know sending us heartfelt messages of hope and faith for the healing of our angel.  People lifting us all up in prayer and well wishes in a time where sometimes that's all we have to go on.  It fills my heart.  I am so proud to be Wyatt's mother.  To think that he has touched so many people's lives and that they take time, if just for a moment, out of their busy lives, to think about and to pray for him.  There have been times in my life when I have thought, "what does it matter to be a good person?"  I questioned why it was that good people finished last.  Why it was that I felt as though being a good person and doing the right thing never mattered.  And why it was that I always followed the golden rule of "do unto others" never mattered.  Today is proof of why.  Today proves that being a good person and treating others kindly, does come back to you.  And it's not just my Eastern Kentucky home.  It's our friends and family in Michigan, here in Tennessee and all over the world.  We will never be able to thank you enough.

By no means are we out of the woods.  Wyatt still has a struggle ahead of him, both long and short term.  Right now, he is still on the vent.  They are attempting to ween him from it, but right now, he is in pain and still needs the help.  Please, keep praying for our angel.  Pray for him to be able to breathe on his own.  It's still so scary not knowing.  Not knowing whether or not he will be able to breath on his own.  It's even harder knowing that when we came in, he was breathing on his own, and now, 40 days later, he has to be on a machine to be able to breathe.  To say that I'm not terrified would be a lie, because I am.  But, I must have faith.  I must have faith in knowing that God will heal my son.  To give it up to Him is hard, but I know it is necessary. 

So, here I sit, masked and drained both emotionally and physically.  Oh, did I tell you that I have suffocation issues?  Wearing this mask is giving me some serious anxiety.  But, it's so very minor compared to what my son is going through, so I think I will live.  I am emotionally drained because I have never in my entire life felt so much love from all over the world, that I feel at this very moment.  I want you all to know that I feel it.  I can feel the peace and love from you all.  I will never be able to express in words how much it means to us all.  Thank you, from the very core of my soul.

Things I am thankful for today.

Prayerful friends, both known and unknown, from all over the world.

Clint Brown praise and worship music.

Minute Clinics and no strep.

Blue Monday's from Wood's Grocery.  They make everything better.

Ash Wednesday shows to be peaceful

Today as been very quiet and peaceful.  My boy has slept most of the day, allowing me to sleep too.  He didn't look like he felt good today, but his temperature wasn't up.  So, sleep was good. 

I haven't had a chance to tell you about our surgeon, Dr. Lovvorn.  We met Dr. Lovvorn when Wyatt was 3 weeks old.  He came in to talk to us about his G-Tube surgery.  He's very laid back and speaks very softly and with confidence.  After Wyatt's first and failed attempt of his G-Tube surgery, he became almost part of the family.  He was just as concerned as we were and wanted to help ease our minds.  He talked to both Mike and I at great length prior to doing the aortapexy.  He answered all questions we had and made us feel totally at ease.  The reason I tell you about Dr. Lovvorn, is I want you to know where his heart is.  Dr. Lovvorn tells us at every visit that he prays for Wyatt.  Just after we were moved to the PICU, he came in very early one morning and told me how he woke up in the middle of the night wondering how Wyatt was doing.  He's very compassionate and caring.  Last week when he did the scope on Wyatt that got the mucus plugs out in order to reinflate his lung, he talked to us for about 20 minutes.  He wanted us to know that he had reviewed Wyatt's file numerous times.  He told us that he felt as though we all made the right decision with the aortapexy surgery.  I can feel his love for his craft and his compassion for his patients.  I just needed to tell you all how amazing this man is.  How God has put him in our lives to take care of our angel.  I know that he has dozens or other children to take care of, but somehow he makes us feel like we are his first priority.

So, on a lighter note, I want to tell you how gross I feel.  Funny, I know, but I do.  You see, the PICU has been a very busy place and those sleep rooms that I relish have become few and far between.  They are given out based upon how far away you live and how sick your child is.  Since we live so close, unless there are lots of them available, we typically don't get one.  Now, I know what you are thinking, "don't they have shower rooms you can use?"  Well, yes.  Yes they do.  However, I feel like when I walk in, I need a biohazard suit.  They take nasty to a whole new level.  I don't want to sit on the toilet in them, let alone take my clothes off and get all of those ickies all over me!  So, I change my clothes daily, to keep the stink down!  But, right now, I could totally use a nice, hot shower. 

Random, it's strange watching the news when they are in the hospital at the very time you are watching it!

So, all in all, I am trying to stay positive.  It becomes so difficult at times that all I want to do is scream, cry and ask why.  I know that we aren't suppose to question God, but I can't help but ask.  I just want my baby to be "fixed".  I want to hold him, read to him, clean dirty hands, bandage scraped knees, dry tears and scare away monsters in the closet.  I want to watch this little angel grow into an incredible man of God. 

Today I am thankful for:

A prayerful surgeon.  Dr. Lovvorn gives me hope and confidence in his ability to help my son.

Baseball caps.  Thank goodness there is something in this world to cover his nasty hair of mine!

Hospital ice chips.  Imagine Dairy Cheer ice within 20 feet of our room!  It's wonderful!

Catherine, our night nurse last night.  We gave Wyatt a bath and she gave him a fauxhawk.  It's the cutest thing you have ever seen!

On Tuesday, Mama Bear had to show herself

So, Monday night/Tuesday morning was a rough time for all of us.  Wyatt was running a fever again and his vent kept going off.  Mama got about 2 hours total sleep all night.  Now, mind you, one of our doctors had told us Monday night that they weren't sure if the plication surgery would work for us, giving us no alternative.  I had a very, uber emotional night.  So, when I asked why he wasn't receiving the hit therapy, as he had been receiving before, the nurse pulled his file, only to find that they had made that decision, and not notified either of us about the change, and I freaked.  Also, only the day before our nurse had mentioned that his blood count was low and would probably need a transfusion, but no one told me about this.  The nurse said that they found out about it a few days earlier.  During the night, they attempted to do a CPAP trial and my poor little man vomited all over the place.  He felt like crap, and all I could do was cry.

Surgery came in for rounds.  It was the fellow (who, might I add is super good looking), Dr. Martin.  He said that surgery was on for Thursday.  Wait a minute!  I had been told the night before that we weren't going to have surgery because they weren't sure if it would help, but now I am being told that we were indeed having surgery?  So, Mama Bear showed herself!

I vented to our super sweet, super helpful nurse.  Kristin then proceeded to call the patient advocate.  So, my sweet Jan came in, again.  We talked about everything that was now going on.  I told her that I recognized that I need a goal, a game plan if you will, to set my sights on, or else I go crazy.  She was very understanding and helpful, promising to get to the bottom of it all.  She left and not 10 minutes later, surgery came back in.  He said that they were going to proceed with surgery to tact his diaphragm down.  They did feel like they needed to give this surgery a try and that halting it previously was in hopes that the nerve would regerate movement.  As he was leaving, the general PICU team was rounding, so they were able to get together and have their talk.  The PICU attending, Dr. Cutrer (who we love) apologized because he recognized that there had been a breakdown in communication along the way.  Thank goodness someone was recognizing it.

So, Tuesday ended up, all in all, being a good day.  Wyatt felt better after some Tylenol and he went to sleep without meds.  I was able to get an entire 5 hours of undisrupted sleep.  The nurse even giggled and said that she heard me snoring!  UGH! 

So, the plan at this point is to have surgery Thursday on the diaphragm.  My poor baby is so cut up.  I hate it for him.  But, in the grand scheme of things, if these surgeries all help him, it's not a big deal.  Besides, chicks dig scars!

Things I am thankful for today.

The ability to vent, cry and pray.  But even more, the incredible and understanding people at Vanderbilt who want to fix it.

Cadbury Mini Eggs

Incredible nurses

Ben & Jerry's Chocolate Peanut Butter Swirl and the fact that the hospital has a Ben & Jerry's on the second floor to feed this addiction!

I feel hopeless

So, the day had been shaping up to be a good one.  The doctors had found a happy place for Wyatt's sedation and he was more awake today than he had been in a long time.  He looked and moved his little arms more today.  His fluoro study was suppose to happen at 10, but due to an emergency, they had to use that time for someone else.  So he went down at 2.  The nurse practioner had said that she didn't see movement of the diaphragmm but I wasn't going to hang my hat on that.

So, the doctor just left from talking to me, and I am having a hard time.  Dr. Lovvorn, whom I love, said that they weren't going to do the surgery tomorrow.  He said that he wanted to look at the study with the radiologist and see what he thought.  He also said that they weren't sure if the plication would even help Wyatt.  He said that in the plication, they would tact the diaphragm down, allowing his lung to dispose of the gasses.  However, because Wyatt has no left pectoral muscle, they are unsure if that would even work.  He said that this surgery has been very successful in the past, but because they have never done these types of things on a child with Wyatt's unique makeup, they just don't know.  Because Wyatt is missing his left pectoral muscle that would help move his lung, he didn't know if this surgery would even help.

So, as of this moment, I feel totally and completely hopeless.  I feel like my child is being punished for something I did.  I know that is not the case, but I do.  I feel like I have been so strong and so hopeful that this set back has just done me in.  I just want my baby back.  I just want him to be ok.  I want to hold him and rock him to sleep.  I can't even put my arms around him.  I want to dry his tears, not mine.  I want to watch him grow like a normal child, not lay in a hospital bed with a machine breathing for him.  I need him.  I need him like I have never needed anyone in my entire life.  I feel like the decision to have the aortapexy surgery was the wrong decision.  And you can't take back that kind of decision.  How do you deal with this pain?  How do you cope with feeling responsible that your child is like this.  I pray so hard that God will heal this nerve.  I pray so hard that he be better.  I know that things are doing in God's time, not ours.  But how do you cope with this pain in the meantime?  I hurt.  My heart physically hurts.  I am his mommy and I want to kiss it and make it better and I can't. 

Please don't think that I am ungreatful for what God has done thus far, because I am.  And I know that He can work miracles.  But, I feel so broken.  I feel completely hopeless.  I don't think I can stay positive anymore.  I just want him better.  I don't know how many times I can say it.  Wyatt is  my life.  I just want him to be ok.  I want him to come home and grow up and play in the dirt.  I want to worry about normal mommy things, not this.  I clean dirty faces and carpets.  I want to teach him and read to him.  I just want to hold him. 

Please know that I am venting and getting out my frustrations.  I feel hopeless and I am starting to feel angry.  Angry that my son is having to deal with this.  I keep talking to God, asking him how he dealt with his only son's death.  I ask him how he got through the pain.  My heart hurts. 

Sunday's are nice when nothing major happens

So, as I said yesterday, I was able to go home and sleep in my own bed.  On my way home, I stopped by Bubby John and Becky's to eat, pick up my mom and get my Roscoe boy.  Since Mike and I are gone most of the time now, Bubby John and Becky are keeping Roscoe.  He LOVES it there.  He and Bo are best buddies and he loves running up and down their stairs. 

I slept most of the day, only getting up long enough to eat breakfast (that Bubby John brought to me from Micky D's), watch an episode of Being Human and see my mom off on her trip back home. 

I got up for good around 3 or so.  It was so nice to sleep.  It was even nicer to sleep with someone, even if it was Roscoe.  I have slept alone every night since we got here.  It might not bother some people, but it bothers me.  I love having someone else there. 

So, I called Mike on my way back to the hospital to tell him I was on my way and to tell him if he met me out front, we could go to dinner and then come back.  That's when he said that we were, again, moving to a new room.  You have to be kidding me. 

When I got to the hospital, I was not exactly happy.  Thank goodness our nurse was again sweet Curry.  When I asked her why it was easier for them to move the child and not the nurse, she told me.  Yesterday they moved him because the child he was paired with in the other pod required too much attention and they needed to move him for staffing reasons.  This move was because the cardiac surgeries take place during the week and the pod we were in was a cardiac pod and they needed the rooms.  Ok, I could calm down now!

Much to our surprise, we were moved back, not only to our old pod, but to our old room.  That's nice.  However, I had to say goodbye to my bathroom and go back to the nasty public bathroom.  YUCK.  Peeing must now be only when I simply can not hold it anymore!!!

Mike and I went to dinner at Calhoun's.  I had to have their pretzels with beer cheese.  And, it was incredible.  On the way back to the hospital we stopped at Walgreens.  I got a new magazine and some sweets.  In the PICU we can't have food in our rooms like we did on the regular floor.  So, I sneak in Lemon Heads and other hard candies.  It makes me feel better! 

Overall, today has been a good day.  No more temperature.  But more than that, they have figured out a happy place for Wyatt's medicine.  Before, it was either total knocked out sedation or total anger for our boy.  When he was out, he was out and that was most of the time.  But, when he was awake, he was trashing and trying to pull out the vent, even with no-no's on his arm and they would then have to sedate him.  Today, they got it right.  It was so amazing to see him awake and moving, but not thrashing.  I could talk to him and he would watch me.  It's been a good day.  Little steps.

I want to become more thankful for things that are good right now instead of always looking at what it wrong.  So, I am going to try and add at the end of my blogs the things I am thankful for.  They may be trivial, but I think it's nice to not always be so forlorn.

Today I am thankful for music.  The following are the songs I have on repeat.  They may change tomorrow.

Mountain Heart's Gospel Heart and John

Everything by the Glee Cast.  Right now Don't Stop Believing, Time Warp, No Air, Poker Face and Teenage Dream

Katy Perry's Firework

CeeLo Green's Forget You

The Beetles' Blackbird

Bruno Mars' Just the Way You Are

Florence + The Machine's Dog Days Are Over