Friday, May 14, 2010

Rhys' Baptism & Final Prayer

At least I have a good view now

Well yesterday was a big day. Brother Don, our pastor from the church, came down to baptize me. Then everyone took turns to hold me. After everyone held me I went back into my mom's arms again, which is my favorite. When mom was ready the wonderful doctor turn off my medicine and removed me from that annoying ventilator.

Brother Don said a prayer and mom and dad held me during my last few minutes. I know it's hard on everyone but I'm so much happier now not being in any more pain. On May 13th, 2010 at 6:25 PM CST I took my last breath and feel the loving hands of my heavenly father release me from my pain.

Dad is working on a video that he will share, but for now this is my last entry. I love each and everyone of you and can't wait to see you again.

Be strong and God Bless You!

Thursday, May 13, 2010

I'm about to be baptized as a servent of my heavenly Father before I go meet him soon.

Our Pastor, Brother Don, just got here to baptize me; which is great because I'm getting close. I'll be baptized by my parents of as a servant of the Church and my Heavenly Father.

Oh Heavenly father I am about to come meet you and I pray you help my parents to be strong and help me to go peacefully. This will be hard for all of us and I promise to keep a couple of seats up here warm for you till mom and dad get up here to be with me again.

I love you both so very much. I love my grandmas and grandpas, my aunts, my uncles and all these wonderful new friends I have meet along the way. I ask for prayers, no longer for me but for my brother and sister, Chase & Regan, to be strong with the news of my passing.

Bless you all for helping us all during this time. Without you all we would truly be lost!

God Bless! Amen

Wednesday, May 12, 2010

So I'm still not well

Mom and dad are still hopeful but I'm thinking it's about time for me to move on to meet my "Father" and wait for mom & dad. Pretty much I still have a capillary leak and been in renal failure for over a week. Usually kids my age in renal failure over a few days don't do so well.

Anyways I put up a few more videos so check out the video page to the right or better yet check out my dad's YouTube channel which might have more videos as it's hard for me to upload to YouTube and update the video page.

Love you all.

Monday, May 10, 2010

Mom gets to hold me!


So I'm not doing so good :(

The doctor just came in to talk to mom and dad. Pretty much I've been just hanging in there for quite some time now. Everything they try isn't helping. They have me on max doses of all my meds. The main problem is this capillary leak which is making me puffy and keeping any fluid from getting to my kidneys. The have pretty much tried everything but this last thing which is to lower all my other meds and give me Methylene Blue.

This med has been used for years to dye your pee blue so they can watch it's path through kidneys etc. It has also shown to temporarly and sometimes permently stop capilary leaks as it a vaso vasoconstrictor.

Mom is getting to hold me for a bit before they try this as it can cause me to become unstable etc. I'm really trying to get better but right now it's not looking so good. But I'm not giving up yet!!!!!!

Wednesday, May 5, 2010

Survived the flood...And Mom confuses me :)

Okay, first I have to say I'm sorry for taking so long to let you all know what's been going on here! They took me off of ECMO and my heart and lungs are working pretty good :) I'm still on the vent, but they were able to put me on more of a resting mode. I am still having a hard time keeping my blood pressure up all the time; but I sure am working on it. As of today, they took me off of my epinephrine and have weaned my vasopress also - so I am down to 2 blood pressure meds and the T3 & I seem to be holding my own :) This makes my mom pretty happy and my dad too. Grandma Terry keeps telling me to stop flirting with all the girls and focus on healing my heart - I don't know, I'm pretty darn cute...gotta start early :D
So, here I am not peeing again - but I keep telling them not to overload me! Do they want me to work on the blood pressure, peeing or healing my heart....what does a guy gotta do?
On another note, Nashville saw some of the worst flooding in it's history this past weekend. Almost the whole town was under water because of the rain and all the rivers. The nice couple that have helped mom & dad out, their whole house was under 4' of water and dad is going to go help them get stuff out tomorrow. I kept telling mom I wanted to go swimming - but the nurses wouldn't let me outta here! Mom told me all about the Opryland Hotel and the Grand Ole Opry and the Mall; the road they take home was all flooded too - so I got mom & dad all to myself this weekend! They stayed at the Ronald McDonald House and are SO thankful to have gotten in there! The basement of that house flooded too, so there is not a laundry room or game room at the moment - but all else there is great. Mom & Dad have met some really neat families all with kids that are sick like me (not necessarily the same thing - but kids in the hospital in common).
So for the time being, they have me on a peritoneal dialysis at the moment to help me get this fluid off and hopefully I will keep my blood pressure up through the night.
Well, mama is getting ready to go back to the Ronald McDonald House and I need my beauty sleep - so God Bless Everyone and hope you all have a blessed week!