One more day to Vandi

So we have one more day till we head down to Vanderbilt. Still dont think Ferlin will be going with us, he hasnt called. With everything that Jordan is going through its just sad. We are hoping to leave out early at 5:30. Long drive down so going to go to bed early. thanks everyone in advance for the prayers.

The crossroads of life

I have had a really hard day today as you can tell from my previous post. Jordan has been doing okay this evening, hes still haveing bursts of nausea and some cramping. He has slept most of the day. I think I was really hard on myself earlier and if you dont know all the things in my life that i am having to deal with then I guess it doesnt make alot of since.

I have been at work all evening jordan is at home with mom and the girls. There all sound asleep and hopefully having sweet dreams. For the most part of the night I have been listening to music. Listening to some good christian music has always been able to pick me up.

I havve never really been at a crossroad in life where there are more than 2 decisions to make. i think i am so overwhelmed at the intensity the things in my life are coming at me. I dont even get one thing figured out before im making another. I talked to someone tonight who prayed with me and I was so thankful to have that person reach out and just ask me it I was okay. Of course hering the are you okay and then someone on the other end litterly down may have been a little scary! Either way I am greatful for my dear friend Carmen. I love ya girl!

Picking it back up :(

Well I laid it down and let go and let God for one whole day before I picked it right back up again! How frustrating is that. This morning Jordans Iv blew again. He cried, he did not want to be stuck again. Dr Kendall said we needed to restart it but Jordan did not want that. So he could either restart it or go home on half the medication and fight the nausea and the retching until they talked to Erlanger in the morning. Of course Jordan chose to go home, I mean how many kids do you know that would stick out there arm and say here you go give me an IV please.

Im the mom I knew in my heart that he should stay I knew in my gut he should stay, its the right thing for him right now, its where he should be, the doctors felt that way to. How can I make a wrong decision instead of doing what I know to be right. I know Jordan wants to be home, but Im supposed to be following where I feel the most peace at. And I let my mommy feelings get in the way. Now im sick, Im nausous, and I knwo I have made a wrong decision. All I can do is pray for forgiveness, hope this doctor gets him in tomorrow and hope Jordans night is as good as he hopes it will be.

Trying to lay it down again :(

Laying it down!

So Jordan had a rough morning but by night he seemed to be doing a little was better. It was really good to be able to see him eating and playing uno. Wow we had alot of visitors come up day, Jordan was really glad about that. His sisters was here! His cousin Brandon came up and they had a good time.

Dr Kendall was planning on discharging Jordan tomorrow morning. The home health company dont want him to come home with a regular iv and Dr Kendall doesnt want to put a central line in because he dont feel its nessecary. So he will be here till Monday.

Dr Carr is supposed to call him come Monday morning and hopefully we will be on our way down, there has been so many people say that today we will be discharged that we are not going to get our hopes up but still think positive!

Ferlin isnt up here like he was with Jordan the way he was last time he was in here, last time fer stayed everynight with him. Watching Jordan cry for him is really starting to get to me. Its really hard to watch Fer go through whatever he is going through when I feel like he should be here and not worry about anything else until all this with jordan is over. I think I have very strongly in not so good ways all the time told him how I feel.

I talked to someone today and he said God had given him a vision on things that were going on in my life. I have had that on my mind all day and I just feel like God is working with our family right now on many levels and if the end outcome isnt what I thought it would be, it is what God knows it will be.

Im laying here now looking at him and I feel so awful that everyone isnt focus mainly on him. I hate that I just dont understand, and their isnt anything I can do to fix it. After yesterday and the miracle with the IV Im trying do my part by praying and laying it down. Never knew giving up things could e harder on a person!

Choices!!

Dr Kendall just left, I guess I'm a lil let down things are not happening quicker, but I'm trusting in God things are happening at the speed God intends for them to. Dr. Kendall was trying to get Jordan in at Vanderbilt or Erlanger. Our choice was Erlanger if possible its alot closer for me and my family to drive, but we would take first available.

He said he would like to get him transferred today but Vandi called him at 9 last night and said he soonest they can get him in is this coming Friday, no beds. We are still waiting on Erlanger to call but he wanted to go ahead and tell us our options. Which are:

1. We can stay here till next Friday and then transfer down there. ( Jordan said this is absolutely not an option hee hee )

2. We can try to get ahold Of Dr carr and see if they can speed things up at Erlanger so that he can go today or tomorrow.

3. He can go home with home health, I will be able to continue the iv medications that he is on myself until Friday when he goes to see Dr on Friday in Nashville.

4. We can stay here and let the surgeons here do it. ( yep, they are saying now they see the flap that needs redone and would be willing to do the surgery ). This was an option until I told him it wasn't! These surgeons have treated my family like crap! I don't trust them and I have reported them for there actions toward us. Now way are they going to do anything on Jordan!!

So this is our option as of now. Our plan is to get ahold of Carr. If we can get Jordan seen down there then I think that would be the best and if we cant we wanna take him home and do it all at home until Friday. Please keep praying that the ball keeps rolling, I think I feel most eager and nervous when the ball just stops!

Lean on ME

I am fixing to head to bed, but wanted you to know that2 hours after I heard about the prayer group for Jordan, the surgeons that we had such a hard time with came in to "apologize" and give me options and opinions, and within 30 minutes after that Dr Kendall came in to say the transfer for tomorrow would be a go as soon as he spoke with the DR down there he seen it happening within 48 hours. Lastly, I had put out a comment on facebook the IV had blown, when they replaced it, just a few minutes later it blew again! Jordan was so devastated getting stuck 3 times in one day was way to much for him to take, So they stopped the Iv and went to get another to restart and while they were gone I prayed over his hand, I prayed out loud and with demand and told Satan to get away from my son, that God already had claimed him and all this evil will stop RIGHT NOW!!! Jordan kinda giggled he dont here me pray like that often. I told Jordan to stop crying and God said we just need to ask but we have to be willing to lay it down and let God handle it... Within 20 minutes, she returned and I asked her to just try the old IV one more time, and Praise God to all of our surprise it worked!!! not only did it work but the tiny vein that she had it in had a blood return like it was inserted into one of his main veins!!

Im telling you I feel a miracles coming, I feel like this huge weight has been lifted and for the first time since all this started I could litterly feel God arms around me as if to say Im here, lean on me!

Feeling the Stress

So this morning Dr Kendall came in. He had heard about all the stuff that went on and could not be any more apologetic. He feels like his hands are tied, he has to work with these surgeons and has to somehow stay on their good side, but he 100% feels like its the fundo. The surgeon says its 100% not, I mean come on are we not looking at the same pictures.

Marilynn called her brother in Chattanooga and he suggest we have Jordan transfered to Erlanger immediately! He is some kinda big shot doctor down there and told us who to ask for and to even let him know that he was sent by him.

When we talked to Dr Kendall about it he said he feels like, hes not well enough to go home but hes not sick enough to do and emergency surgery, and that he thinks that we need to do the feeding tubes and make an appointment to get him seen. Well after last night getting him away from these surgeons is on top of my agenda! So now we wait and see what Kendall can get done..... i hate these waiting games.

SOOO STRESSED!

Furiosity killed the surgeon!!

So we have been here all day waiting for the surgeon to come in up here at ut and listened to all the excuses, he will be here at lunch, he will be here at 3, for sure at 5 when the office closes, oh he has a surgery, he has another surgery. Okay I get it things come up and things happen. As a nurse I can respect and understand that. But when that nurse walked in and said that Shes so sorry to have to tell me but the surgeon has already came up and gone, I swear I think my head spent around several times.

It is crazy to wait on someone so long, here all the promises to be here and then them not show up. Where the heck is their empathy!!! Needless to say I was beyond mad, it was one thing being treated like a nobody at his office, but to be sick enough to be admitted to the hospital and still not be special enough for him to grace us with his presence!!! OH BULL!!

Called the patient advocate and had DR Angel reported she was furious, she was like this is not even the first complaint she has had on him this week!! She filled the complaint with the chief of staff, UT board, and patient safety board. Im so glad that we have got something done. But even threw all my tears I have no idea what to do next, these are the only Doctor surgeons for peds around here.

Once again, we have hit a dead end!

Cross your fingers

Dr Kendall lifted all diet restrictions. For breakfast Jordan ate a piece of bacon....and thats it! For Lunch he ate a chicken strip... three fries... and thats it!
WOW so didnt expect that!

The consult happened at 7 this morning with Dr herd, of how I wish he was not a resident and could actually do the surgery over Dr Angel. He was so nice and seemed intrested, listened to my questions and explained everything he could. He is taking all these tests and the Endo back to Dr Angel (sigh) to see what the verdict is.

Dr Kendall came in also, he actually passed the surgeon in the hall and was able to express his concerns and even tell him what options we had if they didnt do it. When he came to talk to me he went over those options as well, which is the two tubes in his stomach, one to feed him with and one to let the air out to prevent the retching. I do not like these options and Jordan doesnt either. jordan dont cry very often, but he did last night and just does not want to be here, he dont want to leave either cause he knows he will be back up here and have to get re stuck. When I ask him what I can do he just says he dont know. Its sad.

By this evening we will know what tomorrow brings. Surgery or tubes. Please keep praying that gods will be done in this.

Test Day

Mariah stayed the night with us last night and loved it. Jordan actually loved it to, he says she is nicer to him when hes sick, but her calling him sweetie all the time seems weird!

At 10 they took him down for the Gastric Emptying test. He got to eat eggs and loved all 3 bites lol! He had to lay on a table for 60 minutes and not move!What a great job he did. At 1 they took us down for the upper GI. When I had that done, I threw up, he however drank the chalky stuff right down. Both tests came back fine. Sounds like a good thing but not really. The insane doctor from children's wanted to see what all these test showed before he made a definitive decision on weather to do the surgery!

Doctor Kendall came in at 7. Was so glad to see him, but he also didn't have any good news for us. He said he wished we could just get what he needs done over with. But trying to find a surgeon around here is not an easy task. If the doctors choose not to do the surgery then Doctor Kendalls only choice is to put a feeding tube in. After a brief cry and a it'll be ok hug he left for the night. He has a consult in to the surgeons at children's, now we wait!

Oh and Dads coming to get Mariah, phew, she is talking the nurses ears off, every one is pretty has pretty hair and pretty names, She soooo needs sleep!

Home sweet Hospital??

Got things done around the house today, kids school and clothes before I had to head up to the Dr at 1. As soon as I got up there they said Jordan had lost 4 pounds and its only been a week. He laid down in the doctors office and didn't say anything, he feels so bad.

The office sent us back to UT room 424! 4 rooms down from where we was a week ago! We had the same nurse Lucy, Jordan really likes her, she is excellent at starting Iv's and give Jordan a dollar to hold on to everytime, if he drops it or moves he has to give it back. Needless to say Jordans billfold is getting thicker!

Tests scheduled for morning. Iv fluids and Regaln and Zofran has been given every 4 hours, and adult down and together! No one came up tonight, Jordan was tired. Hopefully
better days tomorrow!

Calling Dr Kendall....

Jordan is having a rough day. I have a call into Dr Kendall to see what he wants to do about his retching and feeling so bad. When he called back he wants him up in his office tomorrow. He is probably going to stick him in the hospital to run the test the childrens Dr wanted to wait forever on, grrr.

Im just praying we get something done this time, I hate seeing him like this!

Cookout with the Fam!

We havent gotten together with Dad and Suzy for a long time. So today they did a cookout at the park. What a beautiful day to have it! Sun shinning breeze blowing. Kids everywhere. The only bad part about it was the fact that Shyla didnt feel good. Yummy food!

Everyone leads such busy lives anymore, its really hard to settle down and get everyone together, but today it was done.

I also got to see some of my homeschool friends that was walking the trail. With jordan being sick and The Miles family and the death of their child, everyone has been distant. It was great to see them and get a chance to let them know I was thinking about them and they were thinking of us.

Continueing to pray for the Miles family. She died Wednesday morning at 6:00, I can not even imagine what Vicki is going through right now, but Courtney is home and cancer free now! Thank you Jesus for saving me!

Softball With the Girlies!

We have been outside throwing ball all day. I absolutely love softball. I have played it all my life and would still be playing it if I could. I am thrilled that the girls love it just as much.

Hannah is just starting out this is her second year and how great is it to watch these lil ones learning the basics of the game. Her throwing is great and her batting is wonderful. Fielding for her is another story but hey she is learning! Gotta get that glove down!!

Mariah has played several years now. She is like me in so many ways, loves playing catcher. I was first base when I played, but I did play catcher for a year and man was it hot!Her hitting is very good. Her and the coach seem to have a disagreement sometimes with the bat she chooses. She likes them long fat bats like i did, he wants her to use a smaller one. I sit over and watched them talk about it the other day he would hold up bat and she would shake her head, then another and the same thing would happen. In the long run she ended up useing hers! She stands up for herself but we gotta work on the attitude against authority! Her catching is getting alot better, she was scared of the ball for some reason at the begining of the year but now shes getting back to her old self!

LIVE LAUGH AND PLAY BALL!

Not Gonna Happen

Went to the doctor and seen the surgeon that the doctor is wanting me to go to. We would just rather go to Nashville where we know the Doctors and know that they are great at what they do. He is afraid if Jordan has complications that Nashville would be a long ways to travel to have to get checked out. So we went and seen one at Childrens.

I had been warned about his anything but awesome bedside manner, and to tell you the truth his bedside manner wasnt the thing that made me mad. I mean he actually got along really well with Jordan. Jordan loved the office it was decked out in UT Vols. It was his insistance to do all the test over again that Dr Kendall has already done! WHY?? Im sorry but putting Jordan back through all those tests is insane when they have already been done within the last couple of weeks. Nope NOT GONNA HAPPEN. I would rather drive to Nashville then keep watching Jordan stay sick and vomiting.

Most people would consider me easy going and someone who kind is stand offish it comes to giving my opinion about things. Some situations maybe not. But this one for sure. There is something that happens inside you when it comes to situations with your kids. The need to fight for them becomes the most important thing. I think I can speak for any mom out there when I say "DONT MESS WITH MY KID".

My Seven Day Forecast

Man do I need a seven day forecast for my life. Think about it, how cool would it be to know what days to watch out for and when to bring and umbrella because of the rain!

Take my last week for example, Monday - surgery = rain! Tuesday - cloudy with a chance of crying from Hannah! Wednesday - fits from Mariah with a chance of Ferlin. I mean where the heck are my sunny days!

Took Jordan to the doctor yesterday and they say we have no choice but to do the surgery. So on Thursday were going to meet a new surgeon. If we like him he will be doing the surgery in Knoxville. If we don't like him its back to Nashville we go! Hopefully they will get this done soon so that he will have a little of relief. He has taken more Phenergan in the last couple weeks than he has in 10 years.

There is an ozone warning saying that if you have allergies or asthma stay inside. for one whoever made this warning apperently didn't have kids!I have a feeling were going to have a whole lot of days like this. I mean after all its 80 and April, Lord have mercy on us in July!

Fundo what?

It looks as though Jordan is going to have to have the surgery done. He is not getting any relief from the small procedure that they did. The good news is that its eight years later. 8 years ago, the laproscopic fundoplication was new and very few doctors did it. We did find one in Nashville, Dr. Cyves, that would do it. He moved to Jacksonville Florida to work at the Mayo clinic.

There is a couple of great doctors around here that are doing it now, and I guess we have to make a decision on what to do. We can go to Jacksonville to get his doctor that he previously had, we can go to Nashville and get one of the doctors in the same practice to do it, or we can stay here and let one of the doctors at UT do it. Dr. Kendall seems very confident that the doctors around here can do a superb job, and coming from him that goes along ways! Decisions, decisions, decisions!!

Jordan has had 2 previous fundos, when he was 2 he had one that flipped inside out and they had to do it over. We were in the hospital for a total of around 2 months down there. This will be his third and with each surgery, comes more risks and complications. We are at the point now that we were then where we dont have much of a choice. His quality of life is non exsistant right now. He is taking phenergan about every 4 hours, causeing him to be overly tired, and if he chooses to not take the phenergan the pain from his retching is unbearable even to watch :(

I continue to remind myself that God will not give me more than I can handle, I know that God knows how I feel having to watch his own son suffer and even die for us.


What is fundoplication?

Fundoplication is the standard surgical method for treating gastro-esophageal reflux disease (GERD). GERD causes inflammation, pain (heartburn), and other serious complications (such as scarring and stricture) of the esophagus. GERD results when acid refluxes (regurgitates, or backwashes) from the stomach back up into the esophagus. Under normal conditions, there is a barrier to reflux of acid. One part of this barrier is the lower-most muscle of the esophagus (called the lower esophageal sphincter). Most of the time, this muscle is contracted (constricted, or tight), which closes off the esophagus from the stomach. In patients with GERD, the sphincter does not function normally. The muscle is either weak or relaxes inappropriately. Fundoplication is a surgical technique that strengthens the barrier to acid reflux when the sphincter does not function normally.

What happens during fundoplication?

During the fundoplication procedure, the part of the stomach that is closest to the entry of the esophagus (the fundus of the stomach) is gathered, wrapped, and sutured (sewn) around the lower end of the esophagus and the lower esophageal sphincter. (The gathering and suturing of one tissue to another is called plication.) This procedure increases the pressure at the lower end of the esophagus.

Also, during fundoplication, other surgical steps frequently are taken that also may reduce acid reflux. For instance, if the patient has a hiatal hernia (which occurs in 80% of patients with GERD), the hernial sac may be pulled down from the chest and sutured so that it remains within the abdomen. Additionally, the opening in the diaphragm through which the esophagus passes from the chest into the abdomen also may be tightened.

Go Rowdy Go

A little over a year ago i got into this nascar thing because of a patient that I take care of watches it. It used to be watch it and just pretend like I like it and carry on through the night, but not anymore. Now, its became a competition! He likes 2 guys and i like two totally different guys.

Last night was the best races I have ever seen. My two guys Rowdy and Edwards were in the 1st line, with his two guys right behind me in the second line! Brad Kesowski is so bad right now, always wrecking people and being young and cocky, it is almost unbearable. The only thing worse than him is how Nascar babies him. Well last night he got spanked!

Even after Rowdy got black flagged for doing the same thing that Brad did, he still came back in 16 laps to take first place! HAHAHA, we were both yelling, I was yelling something like go go go while he was yelling no no no!

Best race in a long time! Wait to go Kyle you kicked butt! That burn out should be documented as best EVER!!

Easter isnt a Holiday?!? What???

Rain Rain Rain!! UGHHHHH! Guess we can complain to bad cause of the beautiful days we have been having! Girls have softball practice this evening and Im thinking it will be canceled but who knows!

Gotta go back into work tonight, and Im actually looking foward to it. Nope dont like to work but Its sorda my getaway! Its my thinking time late at night I have a lot of down time because the patient sleep and I can get caught up on gradeing the kids work and thinking about plans, catching up on blogs, and talk to a few of my late night freinds. Home life has been so hectic with jordan being sick and the girls having practices and homeschooling.

I just called work to check on a check that was not deposited into the back and its waiting for me up there. When I asked to make sure that holiday pay for easter was on there they told me, that easter wasnt a holiday! WHAT!!! Oh dont get me wrong I love the guy I take care of, but if it wasnt for him I would so not be there. No PTO time, Very few holidays like CHristams and New Years I think there are 4, No vacation time. Sure the pay is good but all that other stuff adds up. There is absolutely no perks for working where I do. Sometimes it makes me just wanna quit. I mean heck Im a nurse I can get me a job anywhere I wanted to work, home health, hospital, nursing home, wherever! If my guy ever leaves I will be leaving to!

Well time to go get some stuff done! Later!

My awesome little guy....

Jordan went down to surgery this morning around 8. He wasn't scared and seemed fine. What a awesome lil guy he is. So many prayers were going up thanks for that, you can never have to many of those. Dr Kendall, which totally rocks, came in and said that if everything goes good that we could leave soon after it was over, and after being in the hospital for a night we were ready to get out of there.

Surgery went down good, he was quick to awaken after it and starved to death! He was taken up to his room and released. The doctor said he can eat or drink anything as tolerated so we let him pick the restaurant and he picked Red Robins! He loves there French fries and chicken!

Hes already had to have phenergan twice since we left so this is not a good start :(. I hope for him that this is going to work, but we are preparing for the worst and doing our research as to if we will go to Vanderbilt or Jacksonville, if this does not work.

Please Keep praying!!

Sick days...

Jordan is feeling so bad. He had a day that was so bad yesterday it was unreal. After talking to Dr Kendall. He wanted to admit him. We just got admited to the hospital and are settleing in. Its cute watching Jordan tell the nurses where things are when they try to orient him to the room. We have been here so much that it is starting to feel like our vacation home... give or take the iv's.

He just got his IV in and what a trooper he is, he didnt even flinch. Of course it helps that the nurse gave him a dollar to hold onto! He walked down to the gift shop with us a few minutes ago ad was looking for a wrestleing magazine, he came up empty handed so we may have to put in a call to nana!

Long night ahead before the surgery in the morning. Hope he will get some rest! These sick days suck!

Blessings, Bunnies, and Bats

Happy Easter. After several sad and angry posts I think Im back to my own self again! I am determined to make the most of a wonderful Easter day. All I wanna do is rush home and see the kiddos find there basket and enjoy themselves.

We told Mariah yesterday who about santa and the Easter Bunny. I think we have done a pretty good job keeping such a secret. I can remember how I found out. Seeing mom roll that bike in the living room. Such a devistation. Mariah will be 13 this year, lol, yep she is a little old, but you want to keep there innocence as long as possible. She took it well, maybe she sorda had an idea, after all most of her friends dont believe in this. Ahhhh.... shes growing up.

I really wished jordan felt better than what he did. i look forward to the 7th when they can get him in and get the surgery done. I pray it works, I hate the thoughts of going to another hospital like we did when he was 2. So sad for him... But his spirits are great!

We had a little birthday party over at Taras today, Tristian turns 2 on Easter Sunday! We got her a little tee with bat and balls. The set come with 2 balls. I sat one on the tee and Bella was holding one. When I handed Tristan the bat and told her to hit the ball, I am guessing she assumed the one Bella was holding cause she walked right up to her and clunked little Mrs Bella in the head. (ummmm sorry about that). I do think give or take a swat or two in the wrong direction the party was very successful.

Going into this Easter day I feel fortunate and so greatful to be the child of the most high father, to have my life saved and know what Love is. Forgive me Lord for getting in the hustle of the world, and forgeting to take the time out to be still and just know that you have a plan. Thank you Lord for loving me enough to be nailed to a cross, thank you Lord for loving me enough to die for me, and thank you Lord for rising so that we shall have eternal life with you. Forgive me Lord for sinned, I am so thankful you have came into my heart and saved me!

Easter bunnies and Egg hunts are super, but lets not forget the real reason we are clebrateing today, and its not to see Peter Cottontail come hoping down the bunny trail.

Non Fiction....

This week has been very somber and inconceivable. I will be glad to start a new one. I'm at work tonight, its actually a good thing would have me going insane. At least escaping to work gets my mind off things. Ferlin said that he would be gone this morning and hes still here. This has to be a good sign right, that he wants to get better. Lets just hope.

He said day 14 today. It feels so weird to be counting days again when he was able to say 3 years. I have always looked at setbacks as defeat and failure, that's why I try not to have many.... Maybe i should be looking at this more positively while not focusing on all the things that happened but looking for the good points in the situation.... Nah, that sounds to fictional. The truth is my life may sometimes feel like a good fiction book, but in the end I am placed on the non fiction shelf. My life story is good and bad, failure and successes. In this non fiction book you will find my dreams along with my nightmares, my likes and dislikes. I'm telling ya looking for a publisher, this is going to be a #1 best seller, because looking ahead in my book your fixing to read about an unlikely testimony! I can just feel it.

I can do all things through Christ who strengthens me. Believe it!

Heres to a simpler life.....

Horrible day, Jordan is still sick, Ferlin is gone, Easter is coming and I have to go to work! No one said that adult life was easy but being a grown up is hard work. You have to selflessly think of other people which completely goes against everything that you know you should do. Keep everyones feelings in mind and don't make wrong decisions even if you cant make the right one, for fear of hurting everyone you love. I cant decide what is best for me, because sometimes it seems as though I don't matter. I would love to have a 7 day forecast of my life so at least I can be somewhat prepared. Maybe a manual to go by would help. Use the index to look up hard problems your going through and be able to turn right to the answer. Sorda like an open book test for your life.

One of these days everything will be simpler, it has to be....