Tuesday, March 15, 2011

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. 


  1. I am glad Mama Bear is keeping 'em straight around there. I am also glad that you are half way through the week, so YOUR docs will be back soon.

    Thanks for the update. I was wondering what was going on, but don't think we deserve the update. You write when you feel like it, not out of obligation to any of us. We will keep praying no matter what.

    Thank you for your last paragraph. I would need to get it out too. I am certain that I would share your feelings.

    I am continuing to lift you, Wyatt, and Mike before the throne of our God.

  2. Amanda, I too am lifting all of you up in prayer. I cannot imagine what you are feeling right now, but I understand the anger and confusion. Never feel bad about being angry, you deserve to be after all of this. Wyatt will grow to be a very loved, lucky little boy. He has two of the strongest most loving parents I have ever known. I know you don't see that now but that is my prayer and my wish to all of you. Go ahead, get angry, cry, scream and yell at the world, it's understood and necessary. In the end all will make sense to you and Mike. A parents love is unconditional and unexplainable every parent loves differently and every child feels the love from his/her parents. They understand your heartbreak, sorrow and joy. Even if you can't hold Wyatt like you want too, he feels your love and spirit every day.

  3. Dear Precious Amanda, my heart breaks for you and that sweet baby. You are in our prayers daily. You have every right to feel the way you do, and sharing those feelings will bring healing to your soul. Praying without ceasing this morning that our Lord will bring healing and will give you great peace.

  4. Amanda, I agree with Amber on this. You write when you want to write. WE are honored to be able to read your feelings, your updates on that precious baby boy, Wyatt.
    I will continue to pray for you, Mike and Wyatt and for God to continue to lift you with peace and to heal your sweet baby. I have so many friends I have met over the years praying for you too, all over the world and they read your blog in hopes for updates and for better days and results as well. We love you and will always keep you in our hearts, thoughts and prayers.

  5. Amanda I also agree with Amber. I've been where u are and I know the anger the confusion and the fact u can't fix him. Linda Lou and I were talking and we both know exactly all ur feelings. My outcome wasn't what I expected nut I know it was God's will. Linda Lou was as close to the same outcome as I got but God wasn't finished with her. I believe in my heart that God simply isn't finished with your Wyatt has a story to tell and he will. You will hold him and sing to him and all the other things your Mommy needs are. I love you and hope that today you will have a peaceful day. Love u. Helen.

  6. I have been following ur blog shortly but felt I needed to give u some info! Your little man will be able to use a passy muir valve ( talking valve) later on in life with trach! Honestly the trach is not as bad as u think it will actually make weaning easier for him! Each time they extubate his trachealmalysia is causing his airway to collapse which makes him fail weaning. Then he gets reintubated and each time there is risk to his vocal cords for damage. I hope thus helps! I am a respiratory therapist in Cincy! I work with trachs daily mainly with adults!