My son's heart

[Michelle]

Hi,
I hope it is ok to put this here, if not I'm sorry!
I know a couple of you know my son was born premature with a very severe heart defect. He only had a 15 % chance of surviving at birth, with the surgery.
He had transposition of the great vessels, for those of you that know what I'm talking about, lol.
Well, a year ago March at our regular cardiologist visit they noticed one of his ventricles and septum wall, (between the two ventricles) weren't working properly. Well, they restricted him from playing, recess, sports, etc. until they did all of the tests to make sure it wasn't life threatening and lifted his restricting.
Well, it seems like shortly after that he has had several chest pains, they keep getting closer together and worse as time goes by.
A couple of weeks ago, he was outside playing and my other son ran in and said he was laying down crying that his heart hurt. Well, at that point, that was the most severe it had ever been so I called the ambulance and took him to the ER. Well, our cardiologist was on call that night and sent us home. One week later, the Sat. of Easter weekend we were at an Easter egg hunt at a church and his heart got so tired he "fell down and fell asleep", his words. I couldn't find him because he was up on one of those inflatable slides, up in the corner where they turn from the ladder to the slide. I kept yelling for him and he wouldn't respond at all, so after a few seconds and a few yells I tried to climb up an get him and push the button on the monitor he wears. Well, all I remember is I had a hard time getting to him and cannot remember for the life of me how I got him down.
Anyway, as soon as I pulled him out and got him in the sun, I saw his face was BLUE, his lips were as white as his pale skin and blue in the corners. I asked people to call 911 and we laid him inside on the couch and it was really hard to get him awake and keep him awake at first, but finally we did. Well we ended up spending a week in the hospital with no real answers, except that we are switching cardiologists!!!!
We are arranging for him to go to Children's Hospital either in OKC, St. Louis, Houston or Boston.
It is looking like he is going to need a pacemaker to get his heart back on track. His little heart hasn't been the same since that Saturday.
I hope it is ok to post this here, I wasn't sure, if it isn't just let me know, Lis!!
Any prayers are welcome!!! I do know they work, if they didn't my son wouldn't have spent the past eight years here on Earth with me!!!!

[Lis Garrett]

Oh Michelle ~

I am just in tears for you. I feel so silly for worrying over our own troubles with our son, but they are nothing, really, in light of what your family is dealing with right now. OF COURSE this is the proper place to post this message. It is YOUR blog, after all, and we all want to be aware of what's going on with each other. Don't apologize. *I was just thinking of you this morning and have on my to-do list to email you. I remember that you had alluded to your son's heart in a past email, and I was wondering about how you all have been.*

You all are in my thoughts and prayers. Please keep us updated!

[Farmer's Wife/Glass_Half_Full]

OMG! I can only imagine. My daughter stopped breathing on me twice in a row as an infant. I had to rush her to the Children's Hospital. It is the scariest thing. And, I know you have bigger and deeper worries and fears.

When she had her second eye surgery she had an abnormal EKG and when the surgeon came out to talk to us about it and make an appointment with a cardiologist I went immediately to the bathroom and had a panic attack. Turns out she's okay in that department and she has had a urinary deflux procedure since then -- they just check her every other year and tell us what to look out for but she should outgrow it.

It is amazing all the little and big things we as parents go through with our children. Your son is so young. I can feel your fear when you finally found him. Bless your heart. Bless you and your family. Please do keep us posted on how all this goes. And, like Lis said, this is exactly where you can vent all this.

I'm sure you have family to support you but if you feel you have to put on a strong face for them, know that you do not for us.

[Terri Rawls]

Michelle, I cannot imagine how terrified you must be. I will keep your little boy in my prayers and my prayer for you will include peace, serenity and strength.

[Michelle]

Hi Lis,
Thanks so much!!! I'm sorry I haven't been on here since I posted. I don't have internet at home at the moment and my second son tested positive for the flu type A last Tuesday, so we have been stuck at home. =)
Dylan is still at home so far. He is wearing a monitor that he pushes a button if he has any pain. He has had to push it several times already. He was wearing it the Sat. that we ended up in the hospital too, but he "fainted" before he could push it.
On Thursday night last week I walked outside and found him laying under our glass patio table, on top of the weeds. He said he was too tired and had to lay down. I asked him if he pushed his button and he reached for it and said "the button is stuck" (all of this in slow motion). I grabbed it and pushed it, it wasn't stuck, I guess he was just too weak.
We have been trying to get him into OKC to see the cardiologist that followed him through his surgery, but he goes on vacation from May 11 - June 14, so I'm not sure what is going to happen. Our primary care is supposed to talk to him and see if he will see him before he goes, because scheduling says they are booked until July.
Well anyway, I really don't know much more right now, just still trying to get everything arranged and all of us are taking that nasty Tamiflu (lol) to make sure Dylan doesn't catch it.
Oh, I have to take him to the doctor because we think he may have gotten staph from the hospital. He has a spot on his nose, then a spot showed up on his lip and now I found one on his back, right over his spine.
UHG =)
Thanks Lis and everyone for your kind words, thoughts and prayers!!!!!!

Lis Garrett said:

Oh Michelle ~

I am just in tears for you. I feel so silly for worrying over our own troubles with our son, but they are nothing, really, in light of what your family is dealing with right now. OF COURSE this is the proper place to post this message. It is YOUR blog, after all, and we all want to be aware of what's going on with each other. Don't apologize. *I was just thinking of you this morning and have on my to-do list to email you. I remember that you had alluded to your son's heart in a past email, and I was wondering about how you all have been.*

You all are in my thoughts and prayers. Please keep us updated!

[Michelle]

Hi,
Thank you!!!! I appreciate your thoughts and prayers!
I do know about that urinary deflux too. When Dylan was in PreK (in second now) he came down with a really high fever on a Friday, I noticed it when I picked him up from school. He was acting like he didn't feel good. I kept treating the fever and took him to the doctor, but we thought he had a bug because nothing was telling us why he was so hot. They did the urin test and it came back negative. As the next week went on he just got worse. His fever never broke and he became lethargic. I took him to the hospital and by this time he was complaining about his left side hurting. Still the urin tests came back negative.
It wasn't until they did a ct on his abdomen they saw a "growth" on his left kidney. Luckily they came back and said it was inflamed. He got treated there for a week or so but kept getting the infections after we got home, still negative tests, ugh....Well, they decided to have him take bactrim daily for months, then he ended up still getting another infection so they finally did the deflux procedure in March 2007. I now have to make sure he uses the restroom every 1.5 hours so he doesn't hold it and reverse the procedure.
It is amazing all of the medical technology we have these days.
I'm glad your daughter is doing well now!!!! I'm not glad your daughter had the deflux, but it's neat to meet someone who has gone through the same things.
Thanks again for your prayers!!

Farmer's Wife/Glass_Half_Full said:

OMG! I can only imagine. My daughter stopped breathing on me twice in a row as an infant. I had to rush her to the Children's Hospital. It is the scariest thing. And, I know you have bigger and deeper worries and fears.

When she had her second eye surgery she had an abnormal EKG and when the surgeon came out to talk to us about it and make an appointment with a cardiologist I went immediately to the bathroom and had a panic attack. Turns out she's okay in that department and she has had a urinary deflux procedure since then -- they just check her every other year and tell us what to look out for but she should outgrow it.

It is amazing all the little and big things we as parents go through with our children. Your son is so young. I can feel your fear when you finally found him. Bless your heart. Bless you and your family. Please do keep us posted on how all this goes. And, like Lis said, this is exactly where you can vent all this.

I'm sure you have family to support you but if you feel you have to put on a strong face for them, know that you do not for us.

[Michelle]

Thank you so much! Yes, I do need prayers too. I haven't even thought of myself lately!!!
I truely appreciate that!!!

TerriR said:

Michelle, I cannot imagine how terrified you must be. I will keep your little boy in my prayers and my prayer for you will include peace, serenity and strength.

[Karen Nowicki]

Hello Michelle,

I am so pleased that you've asked for prayers for your sweet son. As I am sure Lis shared with you, this is the perfect place to make such a request! I trust that you will keep us updated and you can count on me to send love and light your way.

[Michelle]

Hi Karen,
Thank you so much!! I truely appreciate it and than you for your friendship!!
I will update as soon as I know anything. =)

[Michelle]

Hi Lis and everyone,
I'm sorry I haven't been on here lately. Dylan passed away on Saturday May 9th. We were walking down the sidewalk by our house and he had to lay down in a neighbors yard to rest. As he was laying there he quit breathing and his heart stopped and we couldn't revive him. We were supposed to go to Oklahoma City for his appt. today, the 14th, so today is really hard for me. If it wasn't for my other two kids and the anger I have for the doctors I wouldn't have the strength to go on. I won't get into all of that right now, but I just wanted to let you know.
If any of you are on facebook, I've been trying to update it at least once a day.


http://www.facebook.com/home.php?ref=home#/profile.php?id=726625085...


Thank you all for your prayers!!!!!!

l Love You and Miss You so much Dylan!!!!!

[Lis Garrett]

Oh Michelle ~ I am just so, so sorry for your loss. I wish I could be with you to just wrap my arms around you and hug you. You, Dylan, and the rest of your family are in my thoughts and prayers . . .

[Debbie Yost]

Hi Michelle,
There are no words to express my sorrow for you and your family. I will keep you all in my prayers and pray you find strength through this very difficult time. Hold tight to those closest.

Sincerly,
Debbie

[Tom L.]

Michelle,

I am so profoundly sorry for your loss. Know that you have a lot of people thinking of Dylan and your family during this extremely difficult time. I'm sure you have countless wonderful memories of him and I hope those will comfort you.

My condolences,
Tom Loiacono