Thursday, April 29, 2010

I'm off ECMO!!!!!!!

Well I've throwing a fit the last couple of days because I was sick of this ECMO machine! The doctor went back in to see what was going on with my heart and pulled me off ECMO to see what I could do. What did I do? I started working good on my own, duh!

They still have me on a blood pressure med since I'm still small but so far I'm doing well :)

Mom and dad are waiting to come in and see me once they have finished cleaning me up so I have to run so they can get in here. I'll update you a little later on.

Thank you all for the prayers, I can't tell you how much they have been helping.

Wednesday, April 28, 2010

Doing good, have ANOTHER procudre today.

I'm still doing good, making baby-steps everyday :) My awesome surgeon is going to open me back up today to clear some fluid from around my heart a little later today. Daddy finally got to come back up to see me today, thanks to one of the wonderful people he works with that gave him some money to help with all the expensive he was able to fill his gas tank and come up here :)

Well I'm going to get some rest before my procedure later. I'll update you later tonight :)

Sunday, April 25, 2010

Losing That Water Weight :)

Wow! What a week! So it started out a little hectic with all the procedures and stuff, but I gotta say, as of yesterday - I am doing my thing like a champ! :D
Yesterday the doctors decided it was time to start trying to wean me off of my ECMO machine because I am doing so very good. They got the flow down from 300 to 230 yesterday and today we have had to go back up a little; but that is because they are also pulling all kinds of fluid off of me too :) I like that, I don't look so much like a sumo wrestler any more :)They were also able to take me off of one of the blood pressure meds called dopamine completely; which I think is totally cool because that means I am doing more on my own. I have been holding pretty steady on the blood pressure - with some infusions of blood/platelets/plasma to help when it drops. Mom thinks I may be part vampire, hehe & even the ECMO tech said I sure do like my product lol.
So I am losing a lot of my fluid/water weight. Mom was so happy to see how skinny I am looking again! I will have her take a couple of pictures soon so you all can see...I am not so good at the self photo yet, my arms are too short!
I am waiting for dad to come up and see me. He took Chase and Regan to the zoo again and boy am I jealous! Mom told me if I hurry up and heal myself the doctors will have to let me go home! I know she is so ready to have me home so she can sing to me all the time and love on me and play with me - dad too! They can't wait for me to get better! So I guess I better keep going on this good path to healing up and then I can go to the zoo too!!!
Well, mom wants some more face time with me and she is getting a little bored watching me type so I am getting off the computer for now! Will update you all a little later, maybe tomorrow (as soon as I can get mom to give me back the Mac hehe) she told me no more facebook games while I'm in here - I have to focus on healing hehe

Friday, April 23, 2010

I Pooped and Other Baby Steps

Well, today is pretty good! I am just chillin here pretty sedated, but I decided to show mom my eyes 3 whole times today - which is pretty good because they have been so swollen I haven't been able to open them. Dad had to go home to pick up Chase and Regan for the weekend, but mom is staying until tomorrow sometime, so she can see them too :) I whispered in mom's ear to tell Chase & Regan that I loved and missed them bunches; but Chase doesn't believe it ;)
So yesterday I had a great day! They were pulling lots of fluid off until this morning, when I decided I just wasn't going to tolerate it as well. No biggie, I just wanted them to pay attention to some other my feet. My color is good everywhere except my little feet, which are very red and have some yucky purple spots. They tried a vaso-constrictor to pump up my blood pressure and hopefully push the blood flow through my feet; but that did not work real good. So they are going to put some nitroglycerine gel on my feet tomorrow to hopefully force the blood veins open in my feet. The doctors are a little worried that I may have some tissue damage in my feet with not having proper blood flow there for several days. Other than that, I am looking awesome and the nurses tonight were jealous that I showed my eyes to mommy and not to them. Hehe, I like playing is fun :)
Other than the feet thing, and occasional dips in my blood pressure - I am improving like a champ! Yesterday was a real good day. I had only pooped 2 times since I was born (5 weeks ago! For those keeping track) and yesterday morning, I pooped the last of my meuconium and then I had two bowel movements last night. Hehe - the first one, I tagged the ECMO tech, Scotty - that's what he gets for wanting an "intervention" with me. Mom said no, but I decided to have to have the other procedure - but I got him back for mommy - I pooped on his hand while he was lifting me up to turn me :) He had on gloves, so no sweat for him, but the nurse said he looked like he had a tail. Then the nurse showed my mom that I pooped a little later while she was there. You would think I just became the President of the United States by the way she was carrying on!
Well, mom is beat and so am I, so I guess it is time for some shut eye. Talk to all of you later! Miss you daddy! Hug Chase and Regan for me :) Nite Y'All!

Thursday, April 22, 2010

So I had another procedure last night

During my echo yesterday they noticed that the hole in my heart they left open got bigger :( Since I've been having issues with my blood pressure staying constant they decided to open me back up and close off that hole. After that I was doing good! My color improved, my flow on the ECMO machine went down etc!

This morning I have had to go back up on my rates a bit and getting some red back in my color. This is all to be expected but they are going to do another echo to make sure the clamp closing that hole didn't come off. Besides that I'm doing pretty good and holding my own!!!!!!

Rhys Sleeping Rhys on ECMO
So Cute! ECMO Machine
ECMO Machine Rhys' Bed with Pics
Rhys in Bed Rhys' Door

Tuesday, April 20, 2010

OMG I look like the stay puft marshmallow man!

For everyone worried I am doing good and I am doing as expected. Basically my body is in shock from the surgeries so my capillaries are freaking out! Have you ever sprained your ankle and swollen up really bad? Basically whenever there is trauma to the capillaries the vanes start "leaking". I am simply "third spacing" which means I am loosing extracellular fluid from the vascular vanes to other body compartments making me extremely swollen. The down side to this is because I loose these fluids my blood pressure drops which apparently freaks them out.

I should start settling out soon with this and then the ECMO device will also act a slow dialysis and remove all these fluids from me the proper way :) Besides this I am doing pretty good. They have me on some pain meds so I'm pretty much sleeping. Personally I think they are keeping me asleep so I'll stop flirting with all the nurses (so dad you better get me some digits).

Mom and dad are back in their sleep room and they were good and had some dinner. I Don't have any new pics but here are some pics of outside and mom being silly :)

Monday, April 19, 2010

I'm hanging in there :D

Well I've been hooked up to this ECMO device for several hours now and I'm hanging in there. It's been nice to have some visitors! Of course my mom and dad are hear but also my Grandpa Dennis, Aunt Ginny, Uncle Jack and dad's boss' wife, Jody, have all been up to see me today :D Plus Grandma Terry, Grandpa Steve, Aunt Heather and TONS of people who can't be here in person at the moment are constantly getting updates and sending their love.

I have to get off here soon as mom gave me serious instructions that I am to NOT be up monkeying around at 4am this morning ;)

Mom and dad got out of the hospital for awhile as Grandpa Dennis took them all out for dinner, lucky buggers.

I would like to take a moment away from me and ask you pray for one of my neighbors Shelby. She has be around 2 years old and went off for a heart transplant this evening. She is totally cute and beyond adorable so please take a moment to pray that God's Holy Spirit help guide the hands of her surgeons and be with her during recovery and bring peach to her family.

Well I'm doing ok so far but ready to be off all these flipping wires. If you want to see some new pics of me click the links below. Be warned I do have wires and tubes coming out of me which might be weird to some of you, but I still look good and I know I keep seeing some of the girls in my area checking me, muwahaha :D

Link to album

Pic 1
Pic 2
Pic 3
Pic 4
Pic 5

Well I had a very bad night :(

So mom and dad got a call around 4:30 am that I was not doing so good. They brought in my cardiac surgeon Dr. David Bichell, M.D., who is amazing, please click his name to read his bio. They had to open me back up to clear fluid around my heart and lungs. My stats kept dropping and this morning around 9am Dr. Bichell made the decision to put me on the Extracorporeal Membrane Oxygenation (ECMO) machine.

I have successfully been put on ECMO which basically will do the work of my lungs and for now my heart. My heart and lungs are still working but are not having the stress of powering the rest of me. This will allow my body to heal and get rid of acids that build up after surgery etc.

Mom and dad are pretty stressed and feeling lost at times so please help them out by continue to pray for me.

I love you all, thank you for everything!!!

Sunday, April 18, 2010

Out of surgery and recovering!!!

So apparently my surgery went pretty good! During my surgery they were able to repair my venus return from my right lung back to my heart and they were able to fix my Ventricular Septal Defect (VSD), which is basically a small hole between the chambers in my heart.

They thought I was going to have to be put on a Extracorporeal Membrane Oxygenation machine (ECMO), which is basically an artificial lung, but I did so well they didn't have to do that! I have two chest tubes, some wires for a pacemaker, which I haven't needed so far, a bunch of lines into my body for fluids and the really freaky part is my chest is still OPEN!!!!! Apparently after heart surgery sometimes they leave your chest open to give your heart and lungs some extra space so they don't get constricted. They sewed a sterile dressing and put some layers of stuff to kill any bacteria and stuff but it's still freaking weird. They said if there are no problems they should be able to close me up in a few days.

Now I have shared stories and some pictures of the NICU (Neonatal intensive-care unit) but the PICU (Pediatric intensive-care unit) is simply amazing. I have two nurses currently that never leave the room! I have so many machines hooked up to me I feel like I'm in the Matrix!

Mom and dad were so happy that their Pastor, Brother Don, came up and spend a couple of hours just talking and distracting them. Well I have sent mom and dad to the sleep room to get some rest so now that they aren't here to bug me I'm going to get some sleep. I thank and love you all for all your wonderful thoughts and prayers!

Here is a pic of me but it might be a bit weird if you get creeped out by wires and tubes coming out of me so please only click here if you really want to :)

So I went to surgery

I was suppose to have my heart surgery on Thursday but I started declining yesterday and by this morning they decided I needed my surgery now. They made the incision about and hour ago. They think it will take 6 hours but because this is a critical case they are taking their time. Mom, dad and grandpa Dennis are waiting in the waiting room, which is empty, I guess most surgeons play golf today.

Well I update you all later when I get more info. Thank you all!!!

Friday, April 16, 2010

Had my heart catheter

So yesterday I had my heart catheter, sorry for the delay in posting but the internet here has not been working. The good news is the doctors didn't see anything they were not expecting. I have my surgery to repair my right pulmonary return this coming Thursday!

The lasix's are working and losing some fluid weight, which is good to get rid of some of the fluid I have in my lungs. I am currently having my 7th blood transfusion to help up my hemotacrit (red blood count) level.

Wednesday, April 14, 2010

The Tape Monster

I'm going to make this quick this morning; as mom and dad still have a little bit to learn for me to really give you all the low down on what is going on. First though, mom is calling me the tape monster, because the nurses had to give me an IV in the top of my head, and because of all of my hair, they used a ton of tape on! Dad said it looks like I made myself a hat out of tape hehe.

I am up to 3 lbs. 15 oz! The nurse thinks I may hit 4 lbs by today...that would be totally cool...I am growing so fast and my little cheeks are getting fat :) They have moved my feeds up to 6cc's...and I get totally frisky after they feed me :)

Mom just called the nurse, and she says I have gotten a little upset with her a couple times this morning...but mom got to watch me throw a fit for a full hour yesterday. Hehe, just gotta let her know I have moxy! So, the doctors are still really unhappy with what they are seeing in my lungs, my little heart is just not moving the blood out real good, and I have been spitting up some foamy red stuff. They have decided that I am going to have a cardiac cath lab tomorrow. Apparently they will be putting a little camera into my femoral artery through my groin area (OUCH!) and will go up to my heart to look around. Then they are talking about doing my little heart surgery at the beginning of next week - which is about a week earlier than originally anticipated. I keep trying to tell mom that this is a good thing because I will heal faster and may even get to breathe better...which could potentially lead to me coming home quicker - but she is still worried. My mom is a worry wart!

On the bright side, my Grandpa Forcen is almost 48 hours past his big heart surgery - that will happen around 5 p.m. CST tonight & that makes me happy! The doctors in El Paso say that the most scary time after that is the first 48 hours, so I am sending up a little prayer for him today to make it through the rest of the day :) If you could send one too, we would all be so happy! I haven't met Grandpa Forcen yet, but I can't wait! Dad says he is really crafty and taught him all about building stuff and tools...what a guy! I figure we can talk hearts when I get out of here :)

Well, mom is going to get ready to come see me again, so I have to work on playing possum for now :) Will update everyone as soon as we know more....hope all are having a blessed week!

Monday, April 12, 2010

Busy Weekend...Busy Day

Dad and Mom had a super busy weekend, and so did I. I got to see Chase and Regan on Saturday & I got to meet my Papa. Then they all went to the zoo and mom told me all about the giraffes!
I had 2 transfusions this weekend, because my red blood count was just not going up enough. They held my feedings for a day and a half because when I get blood it makes my tummy upset. On the bright side, they have re-started my feedings and increased them from 2cc's to 4cc's, and I am gaining weight like crazy. Mom just called the nurse, and I am up to a whopping 3lbs. 12oz! :) I'll be breaking that 4lb. mark soon! I love getting to eat, I am not having bowel movements yet, but mom thinks that's because I have only been eating for a couple of days, and my little system is happy to have the nutrients.
I had lots of tests done today, they started out with an x-ray of my lungs - they saw quite a bit of yucky stuff in the right one - so they sent a lady from ultrasound to look at them too. She said there was definitely a lot of stuff in there, so they sent in a really nice guy to do an echo of my heart too. They also dialated my eyes this morning, so I wouldn't look at mom today - but they said my eyes look good and are developing just as they should. I also got to meet Brittany, a really nice lady from mom & dad's challenge bible group today. She was just amazed at how small and cute I was! Mom spent all day with me today and she read some more of the Book of Psalms to me - I think that helps to calm me down :) They turned down my ventilator tonight also - earlier today I was at 45% and when mom checked with my night nurse; they had turned it down to 25% and I am sleeping like a baby tonight - lol :)
My Grandpa Luis' angioplasty was unsuccessful :( He had a 5x bypass done today in El Paso; and at last report was in recovery and resting. It appears that everything went real good today, but we still need prayers for a speedy recovery.
Well, I'm off to have my sweet baby dreams now; the nurse said if I don't put the computer away and get some sleep - she's gonna tie my hands back :) So goodnight everyone....

Friday, April 9, 2010

Please pray for my grandpa

My Grandpa Forcen, which is my dad's step-dad is as I type having an angioplasty done. He went for a doctor visit yesterday since he wasn't doing good and his blood pressure was through the roof (last time I checked 180/125).

He is a great man, my dad says he was a great father, so please take a moment to pray for God to look after him and for God's Holy Spirit to magnify the wisdom of his doctors and surgeons to help him make a great recovery.

My hematocrit levels are down :(

Well my hematocrit (or red blood cells) are down so I'm having another transfusion. On a good note I'm getting my chest tube out!

Thursday, April 8, 2010

The Good, the Bad and the Ugly

So I had another esophagram today and they didn't see any leakage!!! I was able to eat a little today through my tube but...

Apparently they keeps getting mad at me breathing over 100 bpm for a few hours so they had to reintibate :( which stinks because I can't be held or kangaroo. I know in a few days I'll be all good again and get back to eating and being held.

My weight today is 3 lb 4.73 oz (1495 grams).

Tuesday, April 6, 2010

Doing good, mom and dad just came up

I'm doing good, well I am causing some problems as I start breating super fast, up to 110 to 120 breathes per minute. I do good on my belly so they have been keeping me that way most of the time.

Well going to spend some time with mom and dad and I'll talk to you all later.

3 lbs 4 oz

Still doing good! Not much of an update, I'm just hanging in there resting and healing up.

Can't wait for mom to come up! Dad had to go back to work and mom's car died so they are waiting to see what's wrong to get it fixed!

Love you mom and dad!

Sunday, April 4, 2010

Mommy getting to kangaroo me again!

Mom and dad came up after church to be with me on my first Easter! They brought me up a green bunny stuffed animal and some blankets so I can use my own instead of the hospital ones.

The nurses and doctors think I might be able to have my chest tube in a day or two. Then when my esophagus is done healing I can start eating!

Friday, April 2, 2010

Dad got to kangaroo me

Late last night dad was able to kangaroo me too!

Thursday, April 1, 2010

Mom gets to Kangaroo Me!!!!

Unfortunately I had a small leak when they tested my esophagus :( Looks like I have to wait a bit before I can eat, they want to give me more time to heal.

Mom got to kangaroo me, which basically means I got to lay on her skin-to-skin. Dad will get to do the same thing later tonight or in the morning.

New video of mom kangarooing me :)

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