I'm Home. Am Tired. Need Coffee.

Good morning everyone. I hope you all are well. Just a little update. I was able to come home after the surgery. Very surprising to all of us, but I was thankful I am able to rest in my own bed.

I will not know the results of the biopsy until tomorrow.

I joked with Greg that this will be the only time in my life that I will be a 38DD-  but only on one side LOL! I'm surprised at the amount of swelling, really. This is surgery #15 for me and I have never had swelling like this.

And now for an update on our precious little one. Brayden was moved out of the CNICU and into the "step down unit" yesterday. He is breathing on his own and doing well. Next wednesday he will have another surgery to repair another hole in his esophagus. They will have to go through his chest to repair it- and I really hate to think that he has to go through that again- but one of the arteries to his heart is to close to this hole and they cannot safely do the repair the normal way. But this will be his last surgery for a while so he will be able to come home after this one.

Joey and Ashley were able to hold Brayden yesterday for the very first time. Joey stayed at the hospital all night and when I spoke to him this morning he was very tired. He said Brayden's crying woke him at 5:30 this morning. I answered never is there a more welcome sound than a baby's cry when they have been too sick and weak to make even a whimper. Welcome to the rest of your life Joey! It will never be the same again!

They have formally diagnosed Brayden with "Charge Syndrome." and like any other illness or syndrome there are varying degrees of it. We will have to wait and see. But he will be loved and adored no matter what.

Will stop now. Pain pills are kicking in and I need sleep! More later. Love and hugs!  M

I'm back.

Hello everyone. Sorry I haven't updated in several days. Things have been difficult here. But first, and most important- an update on our little miracle. Brayden is now off the respirator and is breathing on his own. We are so very thankful for that. He has healed up nicely from his surgeries, but will need another before he is able to come home. So, please do keep him in your prayers.

As for me, I am sorry I haven't updated on the surgeon visit, etc.  I had to re-arrange the appointments a few times, but I finally had my iron infusion for my anemia. I have to go to the Cancer Center to have them and I am soooooo very sad when I do. There are always so many people there getting their chemo, and some of them are so ill. It just makes me want to bawl like a baby to see them suffering. Then I feel guilty when one of them says, oh, you are so young to be so sick and ask me what cancer I have. I feel guilty saying I don't have cancer. Just anemia. Then the conversation with me stops since I am not one of them. And that's okay. I understand.

I had a very large dose this time. And my body didn't like it much. Was sick for 6 days. Don't you just love it when you do something that's supposed to make you feel better, and it makes you feel like shit instead? But already after 1 week, I am feeling a bit better. It's amazing how terrible anemia makes you feel. And it comes on slowly- usually over weeks or months and suddenly you realize that you can't even walk from one end of the house to the next without needing to sit down afterward.  And I never know if it is the anemia, fibromyalgia, Chronic Fatigue Immune Difficiency Syndrome, or my heart problems that are the cause. But hopefully when I start getting the full effect of the iron infusion I will have more energy to get some things done around here. But, I guess I'll have to wait a bit. I saw the surgeon today and I will be going in for surgery on wednesday. He will remove the lump and lymph node, and then we will know for sure if it is cancer or not.

He gave me the choice of the needle biopsy or the surgery. I opted for the surgery. I told him to just take it out and get it over and done with so I don't have to worry about it anymore. We did not discuss what to do if it is cancer, and I am not going to think about it now. I am following the good advice of a very wise friend of mine (that would be you Ralph!) who said not to worry until I know what I am dealing with. That's not always easy to do. But I am learning that some things are better left in God's hands and this is one of them.

I was told that it normally is an outpatient surgery, but, because of my heart problems, they may keep me overnight. When I had my shoulder surgery they kept me 4 days because of heart issues, but  hopefully, all will be well and I will be able to come home and sleep in my own bed. I will let you know the results of my surgery asap. If I am not up to posting, I will have one of my sons or DILs post for me on my facebook page. (Greg doesn't know how to use the computer,and does NOT want to learn! LOL!)

I gotta get to bed now. It's nearly 1am and I have to be at the hospital early for my pre-op tests. I'll talk to you soon!  Love and hugs!   Marlene

A Good day for Brayden

Hello everyone. Sorry I haven't updated for a little bit. Truth is, I have been in bed all day today. I'm in a flare and trying VERY hard to take care of myself. I'm having a difficult time getting he pain level under control. (I do not like to take narcotic type pain meds) So I have been resting as much as I can.

Brayden is doing well. They were able to close his chest today, and I am sooooo happy about that. They also tested his hearing and he responded, so that's awesome.

I don't have any other news, so this post will be a short one. Ashley is going back to Little Rock tomorrow so I will have more news.   Love and hugs!  M

Happy Saturday!

Good afternoon everone. I hope you all are well and having a wonderful day! It's gonna be a HOT hot hot one here in Arkansas today. Well, spring was nice while it lasted! Greg is shopping with Amy for her birthday gift. I haven't been up to a trek to walmart, so we cheated. She is going to pick out her gift. I did make her a cake this morning. Okay- I cheated on that too. I have several cakes that I baked when I was having a good day and then put in the freezer so on days like this when I am in a bad flare and don't feel up to baking, all I have to do it take it out of the freezer and frost it. I made pretty pink cream cheese frosting and sprinkled pretty cake decor flowers on it. Gosh I'm gonna miss her. They move on June 3rd. I just hope and pray Greg's ex isn't going to be a snot about Amy visiting. It's gonna be really hard on Greg.

The kids came home yesterday from Little Rock for some very much needed rest. Brayden is stable now, and Joey has to go back to work on Monday. He is the breadwinner of his little family and he's already been off for two weeks. Ashley isn't strong enough herself to stay there on her own. She landed in the hopital overnight once already. They plan to stay at the hospital on Joey's days off. I know how hard it was for them to leave the hospital without their little one. My boys were preemies and were in the hospital for quite a while as well......

Chris and Tiffany were with them at the hospital overnite as well and have been a tremendous support to Joey and Ashley.

I got to see pics of Brayden. What a cutie he is. I only saw him briefly before the flight nurse whisked him off to the waiting helecopter. So it was so nice to see him! The photos were taken before his surgery. As soon as I get some actual photos (they were still on the camera) I will post some so you can see what a cutie he is.
They haven't yet closed his chest. They tried the day after the surgery but his BP fell, so they will wait a few more days to try again. Poor kid. I wish I could trade places with him. He has a long way to go and will have several more surgeries (one or two more before he will come home) so pretty please keep him in your prayers!!

So, that's my news for today. Love and hugs!

More details on the surgery.

The surgery went well, but Brayden is not out of the woods yet. They did not close up his chest as he had swelling from being on the life support machinery. He has a sterile clear bandage kind of thingie over his chest but Joey said you can actually see his heart beating. They will wait a day or two for the swelling of his lungs, etc. to go down before they close his chest. They replaced one of his heart valves with a donor valve. It's very sad that someone had to die in order for him to get a new heart valve, but we are soooooo thankful that this family was so incredibly generous to donate their loved one's organs This is such an amazing thing and I can hardly find the words to explain how I feel. Joey said that they received info about the donors and they will send a letter to them thanking them for their incredible gift. I have always had that organ donor box checked on my driver's license although at this point I can't imagine what organ they would take since none of them work right anymore.  :( 

I don't drive anymore (My fibrofog is waaay too bad so I voluntarily stopped driving) but I still have that box checked on my ID.  I know that they can harvest skin for burn victims as well, so if I can just help with that, it would be wonderful. If you have never thought about being an organ donor, please do. You cannot imagine what an amazing gift you are giving to a gravely ill person and their families!

Brayden also has a type of gortex tubing (stent?) in one of his arteries to his heart that will have to be replaced when he is 4 or 5 years old. The thought of more open heart surgery for this precious little one makes me sad. But alot can be done in research in 4 or 5 years time! Thank heaven for the American Heart Association! ( I have been an advocate for them for several years now since I developed heart problems) In this very lousy economy the donations to the AHA has gone down quite a bit. So if you are so inclined to donate to a great cause, this one is very near and dear to our hearts. And I mean that literally!

Well dear ones, I am beyond exhausted,and will stop now. I will write more tomorrow. Love and hugs!   Marlene

Open Heart Surgery is done!

Brayden had his open heart surgery today and did very well! In just a short while he will be in recovery for about 1 hour or so. Thanks so much for all your prayers and emails. You can also leave comments here as well. They mean so much to us. Please continue to pray for him that he has a speedy recovery from this! I will continue to update as he progresses.

I hope you all are well and not having nasty storms like we had last night. We got just shy of 2 inches of rain!

Love and hugs!  Marlene

Update on our little one

Brayden's surgery has been cancelled for tomorrow. He has fluid in his lungs, so they will wait a bit. Please keep praying hard!!!