It's the little things in life. It really is.

As I begin, I would like to thank each of you for continuing to read my blog.  When I started it, I began it as not only an outlet for my frustrations, fear and emotional pain while in the hospital, but I wanted to share Wyatt's progress with our friends and family.  While there have been millions of tears shed while sharing our journey, I am sure that there are millions more just waiting to be shared.  I know that I don't share as I once did, but I promise to make a concerted effort to be better.

Our boy is now six months old!  It seems totally unreal.  We are now in a size 3 diaper and his daily improvements are astonishing. 

We went to see our pulmonologists, Dr.'s Soares and Fazili on Thursday of this week.  At this appointment, he was weighed and measured again.  In 10 days, Wyatt had gained 11oz and a quarter of an inch!  HOLY MOLY!  While I understand that all scales are different, it still means that my baby is growing as he should!  He is still in the smaller percentile for his age, but he is growing so fast!  Dr. Soares if a Fellow and we saw her when we were in the hospital.  She is very warm and caring and I just adore her.  Dr. Fazili is the attending and a riot!  He has such a sweet disposition and you just want to hug him!  Anyway, Dr. Soares asked how Wyatt was doing.  Honestly, he has been doing remarkably.  I say this reluctantly because every time I say he is doing good, something happens.  I told her about how the albuteral treatments had helped Wyatt but that he had not needed one in nearly a week, but continued to sound clear. I told her that he was still apenic, but there had not been issues, per say.  So, she wanted to talk about doing some trials of CPAP or off of the vent. 

Now, as a mother, I want nothing more than for my child to not need the assist of a machine for him to be able to breathe.  However, in order for him to get to this place, he must build that strength back up.  And, in order for that to happen, he will have to do these CPAP or off of the vent trials.  Also as a mother, I have seen my child turn variant shades of blue more than any person should ever have to experience.  With that being said, I was both elated and terrified at the same time. 

Dr. Fazili came in to confirm this plan.  Let's just suffice it to say that Dr. Fazili probably thinks in that I am a nutso who has no business raising a child.  I asked every stupid question under the sun, all while either ringing my hands or chewing my lip (both nervous ticks I have developed, from my mother I am sure).  He laughed at me, trying to calm my fears.  He reminded me, in his sweet accent, that if the baby started to drop his stats or if he could not tolerate it, we could put him back on the vent AND every person in the room with Wyatt knew how to "fix" it, including me.  He reminded me that he would be just next door if for any reason we needed him. 

So, they took Wyatt off of the vent, entirely, and out Dr. Fazili went.  Talk about a stressful time for mama.  I did manage to tell Dr. Fazili, before he went, that I would probably need something strong to drink after this was all done. 

I will spare the boring details as well as my nervous laughter for nearly the entire 30 minutes of Wyatt's own, unassisted breathing.  What I will tell you is that he never dropped his oxygen saturation below 98, the entire 30 minutes!  Praise God!  This was a great sign.  He was breathing a bit harder near the end, but he never dropped! 

Dr. Fazili was very reassured with this.  He also wanted to drop Wyatt's vent setting from 14 to 8 and see if he was truly apenic or if he tended to breathe around that number when he slept.  If he was indeed apenic, we would simply go back to 14 and let them know. 

On Friday we found that Wyatt indeed is apenic.  I changed his settings back to 14 and called the office.  We will most likely go back in for some sleep studies to determine what's going on with Wyatt.

However, on Friday, Saturday and Sunday, Wyatt did remarkably off of the vent.  On Friday we did another 30 minutes.  The doctor ordered him to be off 2 hours and on 2 hours for all of his awake hours.  However, as his mama, my heart isn't ready for that much.  I know the doctor would not have ordered it if he felt as though he couldn't do it, but I just haven't be able to do it.  But on Saturday, he did have a full 2 hours off and never dropped his oxygen saturation below 98.  My baby is making leaps and bounds toward recovery.  Praise God!!

I want to share with you that I feel as though the PPD is subsiding.  It may be that I can see how well Wyatt is doing, or it could be the sunshine.  It may also be a medication my OB/GYN put me on.  **(Ok, personal warning.  You know I don't mind sharing personal information and this blog is no different.  If you do not want to learn about personal stuff, please skip directly to the next paragraph.  You have been warned.)**  Since I am never regular anyway, my doctor prescribed a medication to induce my menstrual cycle if I have not had one in three months or more.  Whether the stress or simply I am irregular, a week ago today I began to take this medication.  My mood change was nearly immediate.  Maybe my hormones were just super duper off from everything.  Whatever it is, I don't care, I am just thankful that I am feeling better. 

So, I went to the grocery store tonight.  Coupons in hand.  Let me just say that while I watch the train wreck that is TLC's Extreme Couponing, I by no means desire to be like those men and women.  I think it is remarkable how much money they save.  However, I feel as though it is an illness to hoard hundreds of boxes of cereal in the top of your closet when they are going to go stale before you consume them all.  It would be one thing if you did a grocery swap (that I understand lots of people do when extreme couponing) or donate the excess items not used to various organizations, but to hoard it all like you do merely qualifies you for another reality show about the illness of hoarding.  (Off of my soapbox).  (Please note that my husband believes I have a mild case of hoard.  This and only this qualifies me to be able to complain about others' issues.) 

Anyway, back to the grocery visit.  I went to Wal Mart.  I go to Wal Mart because it is but a block from my home.  Also, I went at 8:00 p.m. on a Sunday evening.  I generally go at this time in order to miss most of the crowd.  Apparently someone forgot to tell people that this is my preferred shopping time because tonight, it was a zoo.  UGH! 

So, I got Wyatt's diapers, wipes and Mike's deodorant (I had coupons for it all!) and headed for the milk.  Ok, back on soapbox for a moment.  We use organic milk.  It not only tastes better, but it lasts longer and I feel good about consuming it with no hormones.  There are tons more reasons that we consume organic milk (and lots of other organic products) but these are the major reasons.  Anyhoo, since I am no longer working and we are watching what we spend, organic milk is a luxury that I am not about to forgo.  However, where do they get off charging $6.48 for a gallon of milk?  I could feed a cow and milk it myself for cheaper than that.

So, I get the milk and make my way to the yogurt and around to the cheese.  Then, from no where, a buggy (or cart for those of my non-Eastern KY friends) comes like a bat out of you-know-where at me, full steam.  It's a father, his daughter and son in the cart.  The father was pushing and was not angry, but appeared to be in somewhat of a hurry.  The little boy in the cart (who appeared to be around 2-ish) was crying.  The kind of crying that is "I'm tired and cranky and don't want to cooperate" kind of crying.  So, the father goes just past me and is talking to the daughter about some kind of food to get.  Anyway, I peeked my head around to look at the little boy.  He was so tired, I could see it in his little face.  So I smiled at him.  Just a sweet smile at such an adorable child, making eye contact so he could see me.  He stopped crying and smiled back.  It was just one of those moments that you feel good about.  Just one of those times where you shared a smile with a child at exactly the moment that a child needed a smile.  It made my soul smile.

Other events of note at Wal Mart this evening.  The smell of skunk was overwhelming in the frozen section.  While I did not smell the stench in other areas of the store, I am convinced that there is now a new frozen microwavable meal featuring different roadkill varieties.  Yum, possum and gravy, and only 5 minutes on high in any conventional microwave!  Just like mama just to make.  Don't forget the raccoon and potatoes.  You know the skid marks on those are real and not just made to look real!  YUM!!  Maybe I will take one with me for lunch in the office!  (Please note:  I feel comfortable talking about such due to my mountainous heritage.  I do know people who have eaten both possum and raccoon.  To each his own.)

The last note to report was that of a 20-something and her boyfriend.  It was very apparent that they had just come from working out, in some form.  They were both dressed in shorts, t-shirts and I could see her sports bra.  Oddly enough, this is not where the story ends.  They passed me in the produce section.  I was heading to check out and they were heading into the rest of the store.  Sports-bra girl was on the phone talking to someone.  I know this only because I could hear her.  Frankly, the entire store could hear her.  Just as they stopped, approximately 2 feet in front of me, Sports-bra girl reaches down and pulls what was either her undies or her shorts from her neither region.  And no, I am not referring to her hind area.  Seriously?!?!?!  You are in Wal Mart lady!  AND, no one wants to see this.  It was the most disgusting thing I have ever seen in the produce section in my entire life.  I wish I could say in public, but lets be honest, people just don't care anymore!  UGH!  and GROSS!!

So, I hope that you found my rants to be intellectually stimulating.  hahaha  While I am trying to stay positive, some days it is hard.  However, I am finding such strength and influence in the posts of Belinda Wright.  While she is going through difficulties with her own child, he continuous attitude is contagious!

*Please note, if I hear that any of you make millions from microwavable roadkill dinners idea, I will expect royalties! 

One of those days

So, I am having "one of those days".  While Wyatt is doing really well, I am not sure that I am.  I said earlier that I would post my PPD blog, and I promise I will, but today, I am in a funk and I just need to talk. 

The sun is shining, and I am not sure that I feel "bad" just eeh.  We went to PT this morning and Wyatt did really well.  He is gaining more and more strength in his neck and can hold it for intermittent periods of time.  I spoke with the therapist, Tori, about the possibility of Wyatt having Moebius Syndrome.  Moebius is often related to Poland Syndrome.  While I will not get into this syndrome, suffice it to say that I have had this lingering fear for several months now.  I ran across this syndrome while doing more research on Poland Syndrome one day.  Wyatt has almost all of the characteristics.  While I don't think he has a severe case of it, I am almost certain he has is.  We will see the geneticist in a few weeks and I will hopefully have a determination one way or the other then.  I haven't talked to many people about the Moebius because I am not sure if Wyatt has it or not.  It's a much scarier syndrome than Poland and I don't want people thinking that my baby is pitiful, we have enough of that. 

Anyway, off of the Moebius.  So, the sun is shining and I don't feel particularly bad.  I got up this morning and took a shower.  A huge accomplishment for me.  Not that I am nasty, but if you know me, you know that I use to bathe twice a day.  I just don't have it in me most days.  So, when I do shower and get out of the house, I do feel better. 

After PT we came home and here we still are.  On a lighter note, I did get outside and take some pictures.  My neighbor has the prettiest flowers.  He takes such pride in them and I adore that about him.  I just wish I was a better photographer.  I, like many of my friends, adore taking photos.  My daddy was an amateur photographer when I was little.  We had a darkroom in our home for years.  I think I take a lot of my self criticism from him.  He was always so critical of his work, but he was so amazing.  I, on the other hand, am not.  I starting taking photos with my very first camera at the age of 8 or so.  I still have a photo that I took of my cousin and a friend of the family that I took at a family reunion when I was 10 or so.  I remember being so proud of that photo when my daddy told me I did a good job.  I love the art of photography and long to be better.  I have taken classes at a local photography store, but I didn't learn anything different than what I already know.  My problem is, I want the perfect photo, every time.  I want to point and click and get the perfect photo.  That, of course is not reality. 

Anyway, so today, I sat outside for a bit "shooting".  I do not own a software to enhance my photos.  You get what I shoot.  Occasionally I will lighten or darken the lighting from a program on my computer, that was not intended for work such as this.  It does ok, but it's not "professional".  So, when I shoot, you get what I shoot, for the most part.  Here are a few from my day.

I love the turn of his head.  I just hate that I was not closer to him or had a better shot of him through the fence.

I was afraid at first that this little guy was stuck in the fence.

So I went closer.



Indeed, he was not.  And he hopped away.

So, the following are of flowers and such.  They are not great, so I warn you!  By the way, there will be more blog after the photos so hang in there for me! 

Ok, that's it.

So, today we got rid of another nurse.  Mike and I have had issues with her for a time, but yesterday was it.  I caught her suctioning Wyatt way too deep.  Mind you, this has been an issue with her in the past and she has been "talked to" about it before.  Anyway, I screamed and threw a fit.  So, Mike called and told them not the send her back here.  There is seriously just too much that we have dealt with this woman and we were not about to deal with her anymore. 

But, I did get out today.  We went to Wyatt's appointment and it went well and I took Roscoe for a walk.  It was so nice.  The weather was a bit cooler and I needed it oh so badly.  It's really the little things lately. 

I got an e-mail from my dear Rachel, from the office.  I miss Rachel and miss the office more than anyone will ever know.  While I know my job here is MUCH more important than that one was, it breaks my heart to not be there.  Rachel e-mailed me to give me information about a case that I had worked on.  It was so incredible to hear about the case, but even sadder that I was not there to hear the news first hand.  I know this is going to sound so silly and childish, but a part of me is sad because I have been replaced.  I mean, I know that everyone is replaceable, but with everything I just thought that maybe, just maybe, I would be irreplaceable!  :)  But alas, I am.  We are all really.  But I miss it so.  I miss my daily talks with Jon, about silly stuff.  I miss talking hockey with Bill.  I miss Keith asking me some silly question about pop culture, because I have too much useless knowledge of it.  I miss greeting Kimmy good morning.  I miss the sometimes silly conversations we had at lunch.  I miss it all so very much.  It made me feel useful. 

But, more importantly.  It amazes me how God puts people on the hearts of others when they need it.  I received the most amazing e-mails from not one, but two incredible friends and an hour and 20 minute telephone call from by best friend..  Angie's e-mail came when I was starting to feel that dark feeling.  The feeling where all I want to do is sit on the couch, under covers, and not think about anything, because thinking hurts.  Her e-mail was so uplifting and heartfelt.  It made my heart smile.  Then, I got a loving e-mail from Andrea.  Not only did she share her Pamper Points with me, but she shared a personal story.  Its so incredible to have these women in my life that I can get such amazing support from, from hundreds of miles away.  It's still oh so hard to deal with these things, but knowing that there are still people praying for us and thinking of us, makes my heart full.  I love you girls.  You really helped make my day.

My telephone call from Mel was much overdue.  It was one of those that you just talk and talk and talk and feel as though you could talk for 7 days straight and still not talk enough.  It is always so incredible to talk to your best friend.  We laughed and shed some tears too.  It's just what the soul needs sometimes. 

To top my day off, I downloaded some new music.  Music always makes everything ok.  Thank God for 69 cent songs on iTunes too!!

While I feel as though I could go on for days, I am going to end for today.  There are tornado warnings and I think I should go to "my safe place".  Dear God be with us!

News from the cardiologist

So, don't kill me.  I know how long it has been and I am so very sorry.  The PPD has seriously nearly taken over my life.  And while my doctor has given me medication, I have yet to take it.  Honestly, I am terrified of it and the research I have done on it doesn't make me feel much better about it.  Just suffice it to say that lately my life feels very empty.  I know that it is full, but I feel useless on most days.  I won't get into that right now, because I just wanted to give you a quick update from our Cardiologist appointment today.

Wyatt's weight is up to 15lbs 7oz!  YAH!!  It makes me so happy.  He is growing like a weed.  It's amazing.  He's in the 21 percentile for weight now.  It's like if you watch him for very long, you can see him growing before your very eyes!  It's incredible. 

Anyway, at the appointment they did an echo cardiogram to check his heart and stuff.  At birth Wyatt had narrowing of one of his arteries.  Honestly, I knew this, but with everything else, it somehow slipped my mind.  Anyway, he also had a hole in his heart.  Apparently this is the hole that every baby has.  The one that the baby gets blood from his/her mama from.  It should grow together within a few weeks, but Wyatt's had not as of a month old.

Today, we learned that at birth the narrowing of Wyatt's artery was at 13 and they like it to be below a 10.  However, today, it is at 7!!!  YAY!!  Great news.  Also, our doctor said that the hole was the size of a pin prick and was nothing to worry about.  She said that about 20% of the general population is walking around with this very same size of a hole in their hearts!  WOW!  She also said that she wants to see him at about 12 months old and if everything continues to look good, then there will be no need to see her, ever again! WOWZA!  That's incredible.  While I was never really worried about his heart, it is still one less doctor that we will have to see.  It's an incredible weight off of me. 

Also to update you, Wyatt has almost learned to roll all the way over.  While this may be delayed developmentally for most children his age, it's huge for us.  I think that if he were not on a ventilator with all of the crazy tubing, he would be all over the place.  His will to do things amazes me.  I know that all moms think their children are genius, but I know mine is.  His ability to learn things is astonishing.  You can show him things once and he gets it.  He loves to give you his hand to kiss or nibble (not with your teeth, but rather your lips over your teeth) his fingers.  We are still working on his smile, as it is once sided, but he smiles on the left side much more.  He has learned to talk with the trach.  At first it was just a noise here and there, but now it is incredible.  He has really learned how to talk around it.  It's so incredible for me.  I even got to hear him cry, which was so wonderful.  Have I mentioned that he got two teeth at 4 months?  Anyway, he has two teeth and I think he is getting another one.  I like to think that he is already an over achiever! 

Also, I ask that you pray for my sweet friend Belinda's son Trevor.  Trevor is 8 and was recently diagnosed with Leukemia and is in UK.  Her pictures of him always show a smile on his sweet face.  I know her struggle while living in the hospital and how how it feels to not be able to "fix" an illness our children face.  I think of them every single day and pray for them.  But, I just ask that you pray for and think of this family during this difficult time.

I promise I will finish a blog that I have started several times, but have failed to finish.  It talks so much about how depressed I am and I want to get that out.  PPD is nothing to scoff at.  It's seriously debilitating and I feel like if I talk about it I may feel better.  But, today is a great day and I just wanted to share our good news.  Below are a few recent pics of our angel that I want to share.



Video of Our Miracle

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

Day 72

Tomorrow we are going home.

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

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

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

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

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

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

Crud.  Naptime is over.

Day 69

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Things I am thankful for.

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

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

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

Sleep Room Accommodations

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

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

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

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

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

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

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

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

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