Tuesday, March 30, 2010

Finally off the ventilator!!!!

Well I finally got off my ventilator! I still have my chest tube and a tiny tube down to my belly to suck up any fluid but I can breathe on my own!

Mom and dad came up and were so excited. My nurse, Sharon, let mom and dad hold me tonigt; which was great because they have not held me yet. Mom and dad kept giving me kisses and I don't think wanted to let me me go lol.

Well mom and dad are going to go sleep soon, they got a sleep room here at the hospital, so I'm going to say goodnight to them.

I'll give you an update sometime tomorrow morning.

Monday, March 29, 2010

Might get my breathing tube out tomorrow!

Well the doctor is thinking I might be able to get my breathing tube out tomorrow since I'm breathing so well on my own!

Sunday, March 28, 2010

What a long weekend

Mom, dad, my brother Chase and my sister Regan came up to see me for a bit on Saturday. Chase and Regan were super excited to meet me and can't wait for me to come home so they can play with me; however, Chase is not excited about helping to change my diapers lol.

I'm doing better each day! I'm completely off all pain meds, even Tylenol. They were able to take my arterial IV out of my leg today, so that feels better. Besides that I'm doing well.

Everyone had a hard weekend. Friday morning Dad went to check on the guinea pigs and discovered Angus had passed away. From looking online they have a life span of about 4-8 years and Angus was about 7 years old. Unfortunately Wolfgang is going to be lonely and we fear he is not far behind Angus. Chase took it pretty good but was sad.

Then Sunday night Chase's dog (which was dad's dog for 7 years), Gidget (Fox Terrier) passed away. Needless to say everyone is a bit emotionally exhausted.

On an up note mom and dad are coming up to see me in the morning. Dad made me a new graphic to decorate my wall! Talk to you all later.

Friday, March 26, 2010

I'm off my pain meds!

They took me off my pain meds and I'm doing good. I'm hoping being off these meds will help me start breathing more on my own.

Thursday, March 25, 2010

I decided to show mom my eyes today!

Well, mom came up and I decided to wake up a bit and show her my eyes. I'm so lucky to have such a beautiful mom!

So far my stats are doing good. They were able to take my bili lights off and hopefully I might get off this ventilator in a few days!

That's about all I got for now!

Great improvements

Quick update. My bili levels are up so I'm off the lights. I can now pee so my cath is out!!!Everything is looking and good and nurses have been taking such good care of me!

Wednesday, March 24, 2010

Doing good, had a tough night but doing ok

Well I don't want to be long as dad is home with Chase & Regan and I know he is swamped and won't have long to read this.

After my surgery some of my stats dropped, which is expected. I have had to have two blood transfusion due to some blood loss. I couldn't pee so I had a cath put in but peeing now :) I had some blood in my pee but that is to be expected. All the meds made it a bit harder for me to breathe so they turned up my ventilator but I am stable. Once the effects of the meds wear off I'll be back to normal.

Thank you all for your prayers, they are helping so much. I love you all and can't wait till meet you all once I'm out of here.

Tuesday, March 23, 2010

Everyone is finally resting

Well I'm all good! They fixed all my issues with my mouth not connected to my belly. Mom, dad and grandma Terry went home to get some rest.

They said they will get up later tomorrow. They keep wanting to stay here all the time but my big sister's (Regan) birthday was on Monday (she turned 4) and they need to spend some time with her and Chase, my big brother (7). They are going to do a small birthday party and then they'll be back tomorrow night.

I love you Chase & Regan! I can't wait to meet you. I know I'll be the little kid but I hope you'll still want to play with me and teach me to ride a bike and play catch.

Hi Ho Hi Ho off to recovery I got!!!!!

So the doctor just meet with daddy to let him know my surgery went great. It went so great indeed that they were able to reconnect my esophagus to my stomach all in one surgery! I'll write you all in a bit when I'm out of recovery and back up to my room.

Thank you all for your loving thoughts and prayers!

Hi Ho Hi Ho off to surgery I go!!!!

Well they just came and got me for surgery. They had some concerns about my heart, apparently I have what's called Anomalous Right Pulmonary Venous Return, but they are giving me special Anastasie to put me under. Mom, dad and grandma Terry are waiting in the waiting room worrying like crazy. If I had this stupid ventilator tube out I'd tell them to relax and that everything will be fine.

The great part is right before I went into the operating room they let my mom and dad give me a kiss for the first time. Well I'm off to sleep, I'll update you when I'm up!

My videos

Ok so dad got my first video up online. They will show up on the right side of the page and will add more in the future. If it doesn't work for you check back in a bit as apparently YouTube takes a bit to process videos.

Monday, March 22, 2010

The Lord is my protector, thank GOD!

Well trying to sleep...but if you have ever stayed in a hospital you know someone is always coming in to do something every time you just fall asleep.

Ok so apparently something is "off" with my heart and sometime in the future I'm going to have surgery to fix that too, which I don't think will be too big of a deal. On an up side, I'm suppose to have my first surgery to fix my TE Fistula in the morning. I can't wait for this to be fixed because I am starving for some real food, but we all know how great hospital food is ;)     (but mom's been stashing away some yummy food for me...hehe).

If you are reading this all I can ask is for you to pray; my mom, dad, grandparents and everyone are so worried. I know god is watching down and has a plan for all of us, but it is still scary. I know he has a plan for me too, which I can't wait to find out what that is, but selfishly I kinda want some time to know these people waking me up all the time calling me their "little angel".

Oh, while I'm going on about people bugging me, check this out. So I finally get comfortable; which if you have ever spent any time in a hospital, even just in the waiting room you know is absolute torture! So I FINALLY get comfortable and everyone keeps trying to move me. So I'm laying on my back getting my tan, with my legs crossed, which is super comfy, and they keep trying to turn me on my left side (something about trying to drain stuff out of my lungs). Evey time I sneak a peek out of this stupid mask I have to wear cuz of these bili lights and I think I'm in the clear I turn, and BAM they try turning me back on my side! Have they not heard of patient privacy!!! I mean I can't complain to much because my mom keeps reading to me which is very soothing (well I have been hearing her voice for months now which is relaxing.......least she isn't yelling at the dog).

Since I've been going to Church I can tell she is reading scriptures to me. Today she was reading the third book of Psalms chapters 73-77. I just so thankful she was doing that instead of dad (he is beyond tone deaf).

Well that's about it for now. I'm going to get some sleep since tomorrow is a big day. For my mom and dad, I just want to say thank you all so much for everything. Thank you to all our friends, our family and our church family for being so supportive! Also a big thanks for that special couple that visited me in the hospital and helped mom and dad stay so close to me by putting them up in a hotel. They keep telling me, so I want to tell you that they thank you more than they could ever possibly express in words or any other way.

Oh and Brother Don if you read this, please forgive them for sleeping in and not being there when you tried to visit. They where tired and finally convince them to get some sleep...apparently they decided to sleep in (not my idea).

Today might be my first surgery

Well mom, dad and grandma Terry got here a bit ago. I had my CT Angiogram of my heart earlier this morning. We are still waiting to see what that has to say and if I'll be cleared for surgery later.

They still got these bili lights on me, but my sun tan is going good :) Grandma Terry said I better move more or I'm going to get some nasty tan lines.

Well that's about it for now I guess. Oh they did say that all things considered I'm looking very good and strong!

Sunday, March 21, 2010

Maybe I go to surgery tomorrow

Well I think they are going to do a CT Angiogram tomorrow. Pretty much they say it takes x rays in multiple layers of my heart (it's pretty cool, click here to check it out).

If everything looks good I might go into surgery tomorrow. I'll keep ya'll posted!!!

So I'm still here at Vandy - Mom just got here!!!!!!!

Ok, well I fired my dad from writing because...well honestly he stinks at it.

I'm still chillin here under these darn bright lights. Apparently they are called Bili Lights to help me break down my bilirubin, which is just fancy talk for Jaundice. They said I was I border line on needing it but I guess they just wanted to make sure.

I'm still waiting for these doctors, least I think that's what they call them, to come in and tell mom and dad what is going on and their plans for my surgery. I think mom and dad are scared but I'm like "chick's dig scars"! Also by-the-way my mom's doctors finally let her out of the hospital to come see me. I love her being here but I'm trying to sleep and she just keeps talking and talking ;)

All the nurses, doctors and surgeons seem pretty cool. Maybe that's what I'll do when I'm big...their cars are freaking awesome! (oh and chick's also dig nice cars).

Well I'm going to try and catch some shuteye till the quack doctor gets here.

Saturday, March 20, 2010

Rhys is now 1 day old!!!!

Well I finally got some sleep, whew!!! I raced back to Vandy (Vanderbuilt) this morning to be here in time for when the doctor's do their rounds. Vandy is a teaching hospital so there is no shortage of doctor's around, which is great!!!

Rhys is doing good. The main doctor, who has been doing Neonatal for 20+ years, says he is doing very good and stable. They are running a bunch of tests today, including ultrasounds of his kidneys and spine to check for any problems.

They did a echo cardiogram, and ultrasound of his heart, and did see a problem with a vessel that has constant blood flow, at least I think that's the issue. With Rhys being so small it's hard to see everything clearly so they are working to recrunstruct all the x-rays and ultrasounds to get a better picture. They want to be sure and understand everything going on before they clear him for surgery to disconnect the attachment of his esophagus from his trachea.

Rhys is off to Vanderbilt!

So because of his Tracheo Esophageal Fistula (TEF) Rhys is being transported to Vanderbilt Children's Hospital Neonatal Intensive Care Unit which is one of the best. For Neonatal, according to US News, is 13th in the nation; however, I have seen other reports placing them much higher.

Friday, March 19, 2010

Some good news...some bad news...

Let's start with some good news.

We know Rhys was born premature, however, he is looking very good and stable. His red-blood count looks good, he is breathing on his own and alert.

Ok, now the bad news.

Rhys has a problem that affects even full-term babies which is called a Tracheo Esophageal Fistula (TEF or TE Fistula for short). Simply this is a communication between the trachea and esophagus. Basically his esophagus is connecting to his trachea which it should not be. We are not 100% sure at the moment what type it is but based on x-rays the doctors and surgens think it looks like this:

As you can see his esophagus is not connected and from his stomach it is attached to his treacha. Basically this prevents him from eating or swallowing. Apparently this develops somewhere between 4-6 weeks as an embryo. Another interesting fact is that this affects about 1 in every 1000-2000 births. Since there are about 11,000 births per-day in the United States about 2-9 percent of all children each day are born with this.

With technology today the survival rate of this from surgery can be as high as 100%!!! However, one thing to note is about 17-70% of cases of TEF are associated with other problems.

Now it's time to pray and be with our son as much as possible!

Rhys is Born!!!!!

So this morning Chrystal started hurting really bad around 5 am (CST). She tried a bath to relax but the pains kept coming and going. She called our doctor's office and one of the on-call doctors called back and told her to wait and call the office when they open at 8:30 am, remember that time by the way.

My mind is still a blur but I think we went into the emergency room at Middle Tennessee Medical Center (MTMC) around 7:00 am. Once we got up to labor & delivery one of the wonderful nurses checked her out. Well come to find out she was dilated 4 cm with a bulging bag (meaning her water was about to break). After that a rush of nurses & doctors came in and started preparing for surgery. Rhys was still being stubborn and was breach so she had to have a cesarean. We were very nervous as Chrystal was only 30.5 weeks along (37 is full-term).

At 8:45 am our beautify Rhys was born!

Remember the time? We were suppose to wait to call the office at 8:30 am to make an appointment to come in.

As soon as he came out I went with the nurses and doctor to the Neonatal Intensive Care Unit (NICU).

Stay tuned.....