Monday, March 28, 2011

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.

Thursday, March 24, 2011

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.

Wednesday, March 23, 2011


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.

Monday, March 21, 2011

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.

Wednesday, March 16, 2011

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.

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. 

Friday, March 11, 2011

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, March 10, 2011

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.

Wednesday, March 9, 2011

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!

Monday, March 7, 2011

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, March 6, 2011

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

Happy Saturday from a new room

Ok, so since I have posted everything that we have come through, I can now start posting things as I go through them.  So you, my loyal readers, can experience them with me.

Last night I was able to get a sleep room to get some actual rest in.  The sleep rooms are few and far between.  They are given out based on first how far away you live and second how sick your child is.  Well, we live only about 15 miles from the hospital. and so I generally only ask for when when absolutely need sleep.  I have had them a few times and they were such a welcomed change.  They have a full sized bed, that is actually really comfie.  However, the nicest part is the full bathroom.  I am able to shower, in peace.

Anyway, I slept through my 6:00 a.m. alarm.  At 6:30 my phone rang.  It was not a number I knew so I panicked.  The doctors and nurses have my number in case something happens.  So, it was Florence (yes, that is her name and she is only about 25 and cute as a button), our nurse.  Her first words were "This is not an emergency and I am sorry to wake you."  My heart, of course, was racing at this point.  They had moved Wyatt to another pod (part wing of the ICU) for staffing reasons (not something unusual for us).  She was just calling me to let me know so that I didn't freak when I came to see him. 

Since I was awake, I showered and got ready to come be with the boy.  However, in my shower, I talked to God.  It was a very emotional talk, as most of them have been lately.  It was one of those prayers where you beg for something.  Now, I know that begging generally doesn't get you anywhere, but this morning, I needed to get it out.  I know that God knows my needs.  I also know that the word says ask and you shall receive.  And I also know it doesn't say anything about begging.  However, this morning. I just needed to let it out.  When all was said and done, I felt better.  I felt a little relief. 

When I got to our new room, I was very pleased to see that we have a private restroom.  This is incredible considering the public one in his old pod was disgusting.  And when I say disgusting, I mean DIS-GUS-TING!  I twice had to tell the nurses that there was a bodily fluid (and you don't want to know what kind of bodily fluid I am talking about, trust me) on the floor.  Oh, and the patients don't use this bathroom.  Oh, and neither do the nurses.  Just imagine how dirty it is.  So, you can imagine how incredible it was to find that we had our own, private, restroom. 

Wyatt was sleeping, as he always is nowadays.  They have to keep him sedated because when he is awake, he gets so agitated that his heart rate goes up.  I settled in for a long day. 

I asked about CPAP trials because that is what our surgeon, Dr. Lovvorn, had told us last night.  Our nurse, Curry, said that they weren't going to do one because the peds doctor said that they didn't want to get him tired, since his diaphragm wasn't moving anyway.  Ok, here we go again.  So, I sorta freaked.  It's getting much easier for me to voice my opinion.  Curry said that a doctor was going to come talk to me about it.  I also want to note, that I didn't not freak out on Curry.  Curry is a super sweet and kind nurse, as most all of our nurses have been. 

In the meantime, Wyatt had somehow developed a temperature.  So, they took some blood, took a culture on mucus from his vent and started giving him Tylenol.  Now, his temp wasn't terrible, but of course, they don't want to take chances with anything.

My mom came about 11 and sat with me.  It is so nice to have company.  Don't get me wrong, I have completely gotten use to being alone.  It really doesn't bother me.  And, my handy dandy laptop is such an amazing help to beat the loneliness.  Anyway, around 1:00 Bubby John, Meme and my brother came to take us to lunch.  We ended up at Macaroni Grill, one of my faves!  It was nice to get out of the hospital and be around non-sickness, if only for a minute. 

So, when I got back the doctor came in to tell me that she was very sorry for the lack of communication, again.  She also said that even though Dr. Lovvorn thought there was movement in his diapraghm, the radiologist thought that the movement was very minimal at best.  So, their plan was to not do the CPAP trials because they didn't want him to get tired.  I could be ok with that.  She also told me that Wyatt's white blood count came back good.

Also on Friday, Dr. Lovvorn had told me that on Monday they wanted to do a specialized test to watch his diaphragm in real time.  If there was still no improvement, they would schedule the diaphragm plication surgery on Tuesday.  This surgery will basically attach the left side to the right side of the diaphragm.

Wyatt's temperature had broken shortly after he received the Tylenol and didn't have a problem with if after that.  They did, however, start him on an antibiotic, just in case.  You see, Wyatt not only had the surgery from the aortapexy, but he has a chest tube still in.  So, they don't want whatever it is that is going on with the temp, to be an issue later on.  So, they are treating him with antibiotics.  A move I am totally ok with.

Let me tell you what is so special about Saturday nights.  Mike doesn't have to work on Sundays so he comes to stay with our boy so that I can go home and sleep in my own bed.  It's a magical time when I can walk around in a night shirt, and not worry about doctors or nurses.  When I can take a long, hot bath and just relax. 

So, I left the hospital about 9.  I only stayed so late because I was not a fan of the night nurse.  She left a lot to be desired, that's for sure.  I was really happy that Mike could deal with her.  It wasn't that she wasn't good.  She just took her time.  His blood pressure stays kinda low because he is sedated all of the time.  And they have the machine set off to take it every 30 minutes.  So, when it takes his blood pressure, it's low and his monitor goes off.  It literally took her 20 minutes to come see what the alarm was.  Thank God it wasn't an emergency. 

So off I went for my time back home.  I miss is so much, and I'm pretty sure Mike isn't watering my plants.

Friday, March 4, 2011

Life in the PICU

Wyatt's oxygen rate was dropping rather quickly.  Our nurse had to call rapid response, again, for their help.  They talked to me about what might possibly be going on.  I asked the doctor if one of the possible complications during the surgery had been the cause.  They weren't sure, however, this information was very helpful in determining the cause.  More on the cause later.  They used the blow by to get oxygen to him while they moved him into the PICU.  They put him on CPAP in hopes that it would suffice.  It did not.  Once in the PICU, they had to intubate him, which meant that he was back on the ventilator.  And being back on the ventilator meant that he had to be sedated. 

On Saturday, they took Wyatt off of the ventilator because they felt like he was breathing well on his own.  His respiration rate became very fast and his heart rate rose.  They put him back on the ventilator Monday morning and they took an x-ray and found that Wyatt had fluid on his left lung.  Because his diaphragm was pushed up against the lung, fluid accumulated around it.  The surgeons put a chest tube in to drain the fluid.  In the process of this, they found that his left lung had collapsed.  On Tuesday, they scheduled Wyatt for another scope.  They felt as though a mucus plug had caused air to be blocked from his lung and for it to collapse.  The surgeons were able to determine through the scope, that there were multiple mucus plugs.  They were also able to remove several of them.  Wyatt's lung re inflated rather quickly.  So, Wyatt had been breathing, off of the ventilator, for more than 36 hours on one lung.  Please keep in mind that the right lung is compromised because his heart is on that side.

So, it turns out that one of the possible complications from surgery, that we had been informed of prior to, indeed had caused Wyatt's breathing issues.  It seems that during the surgery, the nerve to the diaphragm had to be moved, not cut but rather slightly pushed to the side, in order to get to the aorta.  In doing so, it paralyzed the nerve. The surgeon had informed us that by moving it, possible paralyzing could occur.  Indeed, this happened.  The left side of Wyatt's chest is where the incision was made to do the aortapexy. 
The doctors had hopped that by giving his body time to rest, this nerve would recover and heal itself.  They have now given him 7 days, and this has not occurred.  They have attempted to wean him off of the ventilator, and he has failed each time.

This morning, seven days after the aortapexy surgery, our surgery team came in and they feel as though surgery is the only option.  This surgery will be to tact the left diaphragm to the right.  So that when the his right side moves, it will move the left, allowing him to breathe easier.  I don't know much more information about the surgery, but I will post more information when I get the chance.

On a side note, I just want to vent on how hard this is for me.  I have tried to stay oh so strong for everyone, for Wyatt, Mike, my family.  But honestly, I don't know if I can much longer.  I have gone 7 days now and have not been able to hold my baby.  He has been sedated for 95% of this time and on a ventilator.  All my baby does is sleep (if that's what you call it).  Prior to the aortapexy surgery, he was so happy, playing with his feet.  Now, it's a miracle if he opens his eyes enough for me to see them.  I want my baby back.