Tuesday, April 30, 2013

04-30-13

Good morning everyone. Angus is doing well, aside from all the melt downs due to his strong dislike for tape! All the medications are off this morning. Except for the anti-rejection meds of course and the antibiotics. His atria (normal pacer site) is waking up, but he is still has the internal pacer. Angus says he feels different when it is off. The first biopsy is scheduled for May 8th. After that, we will know more about when he can come home. Craig and I got a lot accomplished yesterday at home. The house is getting back into order and ready for Angus to come home. Hopefully sooner than later.

Thank you for praying for Angus. We hope you will continue to pray. We also appreciate the love and support more than you know.

Report about the other child who received his heart transplant...Doing very well!!!!! Please continue to pray for him, as well as the other one who has been waiting 5 1/2 months.


Saturday, April 27, 2013

Up and walking

First walk since transplant.

04-27-13

Angus is having a wonderful morning, he woke me up to tell me one of the kids i put on the blog got a heart! He is so excited!

For those of you who are praying for the two I put on the blog several days ago...keep praying for both of them. We know God does deliver! The family has not gotten a confirmation call yet, so please pray they do and it will be the perfect heart!


Friday, April 26, 2013

04-26-13

We have gotten off to a little rough start this morning, but he has been joking around more! Made it in the chair for 5 minutes, then got dizzy. We tried. One day at a time. He is still on quite a bit of meds and a pacemaker, so it is to be expected.

Continue to pray!!!

Thursday, April 25, 2013

04-25-13

Oh lord please bless me and my family... we now have two in puberty and one of those is on steroids!!! Lord, I only thought we had mood swings. ok...
I can tolerate it, you did allow us to keep him! Please give us strength though and help us remember, this too shall pass.

He is eating very well...still painful, but not detouring him.

Please continue to pray. There are also several more I would like to add to the prayer list, ok +many more.... (3 that are in need for the perfect heart).
God we know you are good and you have a plan, please help us to gain strength and understanding from your plan. Point us in the direction you need us to go with this message or maybe you have bound us closer together.
Thank you God for what you have done for us, given to us in Jesus and what you will continue to give! Amen

4-25-13

Today Angus stood and sat at the beside in a chair. He was a little dizzy, but otherwise tolerated it well. There is a plan to walk later in the afternoon. We will see how that plays out.
He is not fond of two of his IV lines or the Nystatin medication, but he is reasonable.
We know everyone wants to visit, but we are taking precautions to protect his heart and he understands and sends his love to everyone. For those of you who do not know, he cannot have visitors because he is on a medication that completely shuts down his immune system. (his body is unable to fight infection, so he is at a greater risk for developing an illness that will invade his new heart very easily). None of us want that...we want a strong heart and Angus to return home as soon as he possibly can.
Please continue to pray for recovery, Thank you all for your daily support!

Wednesday, April 24, 2013

8pm, 4-24-13

Hello, Angus just conned his nurse into buying him pizza...lol! He ate three slices. Then he got hiccups! Ouch. Today he got his chest tubes removed, as well as his foley catheter. He is strong! One day at a time!

01:49

Ok...it's 10 minutes till 2(in the morning), and I just woke up to go to the bath room(that's what I do now...I'm in my 40's). I didn't wake to an alarm or to Angus moaning or being in pain. I just woke up because I had to pee. Thank God! He is lying there with his legs crossed way up in the air as usual just sleeping like a baby for the first time in 1 month 3 weeks and 1 day. Truth is I couldn't be happier with having to sleep here right now. I miss my wife and other 3 kids, but this is worth the wait.

Craig

Tuesday, April 23, 2013

YouCaring.com Fundraising Site is up!

Check it out at http://www.youcaring.com/heart4angus ! The first page is a video that Angus' Aunt Jeanie (Stevens) created. Unfortunately it's got copyrighted music in it, so you can only watch it on your PC/MAC. It's not available on Mobile Devices (Android/Apple). Please like and share this video on Facebook, Twitter, Churches (that's your Church, not the Fried Chicken place.. c'mon now), The Bowling Alley, The Pool Hall, The fast food restaurant with that burger you just have to have (yeah, I'm talking to you mister "my pants shrunk"), the bar, with the guy playing darts, that pretty girl at the grocery store (you know who you are baby... "how you dooin"), the hibachi restaurant chef that throws the shrimp up in his hat, the UPS guy, your congressmen, the gals/guys at the nail salon (hey, this is the 2000's after all), oh.... and Oprah!


From Jeanie:
Please take 4 minutes to watch this video and then visit http://www.youcaring.com/heart4angus We need to raise $100,000 to reach our goal and the family would appreciate any financial contribution. Our goal is 1 million views! please help us reach our goal and give Angus a HEART OF GOLD!! Thank you so much for your donations, prayers and support!

Update

It has been about 5 minutes since my last post. The picture on top in my post is the echo of his new heart this morning...the echo tech lady said it was a pretty one.

Oh yea...I forgot Jennifer put the toenail pictures up already. Sleep deprivation is so bad.

Craig

Tuesday Morning

I came in to Angus and an onslaught of nurses as to be expected. He feels really good and said he wants to get up. We are going to at least have him sit on the side of the bed today and hopefully will be able to get the chest tubes removed tomorrow.

It is very critical that he does not have any exposure right now. They have put him on a medication that kills the cells in his blood that normally fight infection, so his body doesn't think that is heart is one and try to kill it. A simple cold can be (without a better term) life threatening for him right now. Visitors are welcome to come by but are not allowed in to see him. At least for a while. Once he is able to get up and walk the halls, maybe by then we can allow a few people in. Anyone who wants to come, just give us a call or let the ladies know at the desk and we can come out if we are not too busy.

So as everyone knows by now Angus is a Seminole fan and has been giving all of the nurses on the floor a hard time. So he got paid back when he came in from the transplant and was still sedated. He got his toe nails painted Orange and Blue by two of the nurses. Pictures to follow.

Angus is very happy right now, he just wants to get better so he can go home. I think he misses the dog...lol.





Monday, April 22, 2013

Breathing Tubes Removed...

Angus is about to get his breathing tube removed, requesting his Foley catheter be removed. Don't think he is quite awake enough. God is good and he does deliver!!!

By the way...check out our new Gator fan....NOT!



Heart is in

Dr. Wallace from the heart crew just left the room and said,"his new heart is jamming along".

Craig

Update on the surgery

We for word at 6:30 pm
He has been in the OR since 02:00 AM. The heart arrived around 530 this morning and they are placing it now. He is scheduled to be out around noon. So far things are going very well. Continue to pray.

4/22/2013

We have a heart!!!!! Woo hooo!! God is good. Lets pray that the procedure goes well and the heart looks perfect enough to use.

Sunday, April 21, 2013

4-21-13 post VAD change

VADs are changed and he is resting comfortably. Dr. B said, "there was some "junk" (clots) in there, but he has seen worse.

Continue to pray for a beautiful heart soon!

4/21 VAD changes

For everyone who has been following....thank you very much for everything that has come our way. It has been a roller coaster of a ride for us and all though he is doing a gazillion times better there are risks still involved.

The VADs or pumps that are in place to actually move the blood have gotten quite a few clots. It was explained to me by one of the doctors that since his blood is passing through something that was not created by God(which I feel he played a huge role in creating this machine, but anyway) that the blood will try to do its job, that is to clot. Since this is happening more than the Doctors are comfortable with he is going to have both pumps changed today at 0900. There are risks involved with leaving the pumps in place with the clots that have formed of one dislodging from the right pump and ending up in his lungs, or from the left pump and ending up in his brain. On the other side of the spectrum there are risks during the pump change that include lack of perfusion during the procedure and micro bubbles that can form and ending up in his brain or lungs.

In a nut shell...we can be danged if we do or danged if we don't. This is by far one of the most amazing machines in its simplest form I have ever witnessed. It all comes with risks and with the good lots of times comes the bad. He will be out for a while after and we will just pray that all goes well and God can keep brains sharp and hands steady of all who will be involved today.

Craig

Thursday, April 18, 2013

Another way to give

Donate life- be an organ, eye or tissue donor. To understand more go to donatelife.net

Be the match - "For people with life-threatening blood cancers like leukemia and lymphoma or other diseases, a cure exists. Be The Match® connects patients with their donor match for a life-saving marrow or umbilical cord blood transplant." (m.marrow.org)

To understand more about blood transfusion/donation and HLA matching/cross matching....go to
http://www.stanford.edu/dept/HPS/transplant/html/hla.html

Please consider to donate. I realize it is a tough decision and many of us do not think in advance...we should consider that someone is in need.

Thank you,
Jen

04-17-13

5 days since last post. Angus is doing better in school...lots of threats for spankings and briberies : ) He is dehydrated and his pumps are showing that. Caffeine free drinks and water; however, he is not drinking very much either! Weird considering he is always getting ice and water at home.

Thank you for the livestock donations and purchases. I heard there was also a beautiful, hand made quilt!

We cannot thank everyone enough!

Friday, April 12, 2013

4-12-13

I sat today with Angus and realized how much patience home school parents have. Gees! I had to almost threaten to take all his fun things away in his room. I started with his phone, then his play station remotes, moving onto iPad and I said boy... Do you not get it? Do it or you won't have TV or computer either AND you will still be repeating 7th grade... AND this time it will be with your sister! He sat up and bed and got busy, but God bless him... First day back and he had easy English, math and then a test in science that reminded me of dreadful physics... ! In the end... He was able to keep it allHe then said, "Jen your making me do school on Saturday"? And I said, " you just ha a month of Saturdays, time to make up. " it is our job to teach responsibility whatever the cost....so get her done!!!

Tuesday, April 9, 2013

Thank you Grits girls

Thank you GRITS girls (+ others) for doing the fundraiser in Dunnellon for Angus. I heard the food was very good. : )
Thank you everyone who supported us by coming out and buying the dinner from the GRITS girls.


(Click Photo to Enlarge...)

4-09-13 Nutrition, Necklaces, & Jewelry...

Ok... We are going to try and get Angus on a normal eating routine. His nutrition is not the best and so we are going back to the old tough mom and dad. He can only have a soft drink with his NORMAL meals. (They only get it at home for a treat) ...I know what all of you are thinking and its okay. My concern is how he will convert to taking care of his heart after his transplant if we are pushing the terrible stuff on him now. TRUTH...we know that we are all at risk for coronary artery disease; well..Angus is at a higher risk. We ALL would like to see him be healthy. Which means I am also having to play the nurse role. Angus and I have discussed this and although he is scared...he now knows why I am being "difficult" (his words) because I love him.

He does need protein for healing and calcium from bone strength, he cannot have spinach or kale right now because of the vitamin K, the reversal to all the blood thinners...we want his blood thin. So, he likes the chocolate smoothie from Tropical smoothie, I put whey protein and a multi-vitamin in it too. It tastes yummy and the dietician loves that he likes them.

Off my soap box now! Pics of the necklace presentation...Thank you again Gary and Michelle for them. Praying for your families as well.

Praying for a heart in Gods time.

I have a friend that is willing to do a fundraiser..selling Premier jewelry. If anyone is interest, please let me know. There is a catalog online.

(Click Photos to Enlarge...)




Sunday, April 7, 2013

4-7-2013 Happy birthday Savanna

Good morning. GOD is good and so is Angus. We have been blessed! He is stronger and ready for a new heart when the best one comes. I read this in a book that Super gave me and thought it was awesome...and fit my little gamer : ) Apostle Paul instructed all Christians to "put on the full armor of God" the helmet of salvation, the breastplate of righteousness, the belt of truth, the sword of spirit, the sandals of gospel peace, and the shield of faith (Ephesians 6:13-17) He will provide us when the time is right and we believe that.

Happy Birthday to Savanna! Today Angus requested we have a party for her in his room, so that is the plan.

Thank you everyone for purchasing dinners in Dunnellon, as well as the awesome necklaces!

Jen and Craig

Wednesday, April 3, 2013

UF...enough said!

Today Angus was paid a visit from some of the University of Florida football players as well as some female athletes form the Lacrosse, Track and Field, Gymnastics. Angus was piled up in his bed with his FSU blanket and pillow when all these guys and girls came in and it didn't matter to him. He thought that was the coolest thing since the Berlin Heart. The look and smile on his face was worth mare than anything I could have ever imagined.

I can't thank UF & Shands enough for all they do and have done. Not only for us, but for everyone who has ever been even close to where we are right now.

Thank You Gators!

Craig
(Click photo to enlarge)

Tuesday, April 2, 2013

Long time since...

It has been a long time since I have posted anything, we've been quite busy. Angus is getting around pretty good these days and is now only on medications by mouth and is no longer attached to the IV pumps. He is still quite weak at times and has his ups and downs, but seems to be in really good spirits most of the time. He is very happy with the generosity of everyone who has been showing support, he is a very appreciative child. He has made many friends in the nurses, doctors and other staff on the PICU floor. Jennifer and I are also very grateful to everyone for the support in all aspects. This (even though it has been a month already) is still a complete shock to us and we have to do all we can to try and keep things as normal as possible for Angus, Savanna, Flynt and Seth as well as our selves. We could not be doing any of this if it weren't for all of you. I sat down yesterday and tried to remember everyone who has been a part of this adventure with us. It is long from over and we know that we will always have the support we need.

Thank you again to EVERYONE

Craig and Jennifer

Monday, April 1, 2013

Angus' Article in the Gainesville Sun.

You can read the article by clicking here.

Monday evening

We had a great weekend. He is improving. His feeding tube was removed, all he has now is his IV and Berlin Heart connected. He is still easily exhausted, but walking laps around the unit, is nothing short of a race : )
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