Many of you who know me, know that we have issues with the hospital in our state. Many of you know why, and for those of you that don't, I can't really talk about it.
That being said....I am beginning to wonder if they have just given up on Rhett.
Yes. I get it, they are afraid to touch him, and we make sure that everytime we step foot in that hospital, it is crystal clear that anyone who touches him better be on their toes and not screwing things up. Maybe that's a bad thing in certain ways. But in the same breath it's a good thing as well. I won't just stand by and think that they know what's best for him anymore. I won't put my faith in someone who has no idea what this child means to me. But when you get to a point where it seems like they are letting him fall through the cracks, it makes me angry.
We've struggled with gaining weight over the last 9 months. Okay, I'll be honest...he's loosing it. Last year at this time, just before his 3rd birthday he was 37 lbs. This year he is 27 lbs....dripping wet with his clothes on.
His general health is fine. He eats well, and he gets bolus feeds of Elecare throughout the day in his feeding tube.
But his heart is wearing him out. His tricuspid valve is leaking pretty good and he's burning lot's of energy.
The above picture says it all. You can tell that just over the last month there has been a rapid decrease in how he is feeling. He's tired, you can see it in his eyes, see it in his step, as well as his sleeping habits.
I don't think it's fair that the Dr's keep wanting to put off his valve replacement until he's older. I feel like they aren't looking at the whole picture. They are just looking at the fact that the older he is the less surgeries he'll need since that valve won't grow with him.
Don't get me wrong. I totally understand that. I agree with it to a point. But the thing is, is that I don't understand why they have to let him get so sick before doing the replacement. I don't want another surgery. I don't want to ever step foot in that ICU again, knowing that just around the corner my perfect little boy is lying in a hospital bed on life support, while the rest of the world goes on with their lives.
However I don't enjoy just sitting here watching him waste away while his health declines, and the Dr's just sit on the sidelines going hmmmmmm.....
I find myself lately lying in bed with him. Running my fingers across all of the scars on his battleground of a chest. He has had to fight so hard for everything that he has accomplished. I don't think anything has ever come easy for him.....I'm not sure if anything will come easy for him. But I know that whatever he does, I will be there to fight right along with him.
I'll always pick him up when he falls, I'll never leave his bedside when he's sick or had a surgery. I'll always fight for him tooth and nail. I'll never stop.
I'm not afraid to hurt anyone's feelings....if I have to take him to a different state so that he can get the care he deserves I will.
He is my child. My life. It's why I'm here.
14 comments:
I am SO with you. I do not think it is possible for the doctors to care about your child anywhere near as much as you do. So if you have to hurt their feelings, go against their directions, go with your gut, do what you feel is best for your child, make him better rather than watch him decline, then girl that is what you have to do. YOU have been given the charge of loving and caring for him. Your strength and courage to do that despite medical professional's directives, regardless of any financial sacrifices, will take you and Rhett far. I wish you the best in your journey. You go, girl! You go, Rhett! Get better. Embrace life. You've got a cheering team in Chloe and I, and about a million angels surrounding you.... They will carry you when it gets hard. Much love and good wishes to get Rhett back to that happy, smiling, healthy face of a month ago. =)
Pam, Thank you for much...your post is love in the purest definition of a mother. Keep fighting for Rhett and your family. I'm praying for you. Suzie
Pam: you never cease to amaze me. You keep fighting for that precious boy! We are in a similar circumstance with Curtis. His situation, of course, isn't life-threatening, but so frustrating. The Docs think he is beyond help and we don't. We fight on for him. Keep it up! Love ya!
Pam I'm so sorry you are dealing with issues like this. You would think you would or should be able to depend on the medical field. But unfortunately, I guess even there you have to be on guard. i can't imagine watching Rhett's health decline and not be able to get the go ahead by doctors to do the needed surgery. Thank goodness Rhett has such a fighter for a mom.Stay strong ! Sending prayers.
What a great advocate you are for Rhett. Keep up the good work.
I am ALL for 2nd opinions. When we found out last Oct that Owen needed a heart transplant, we visited CHLA, UCLA and Stanford. Phoenix Children's was honest and said, we can't touch his heart anymore, it's too risky. I appreciate their honesty as it has allowed us the opportunity to search for a hospital that is able to work with Owen and transplant him. As a mom, it gave me a HUGE piece of mind to know that we had four opinions from four major hospitals. ALL with the same outcome.. Owen needs a transplant. We were then able to visit each hospital and decide that the best fit for Owen and our family was Stanford.
If you aren't getting the care that you KNOW Rhett deserves, get more opinions. It doesn't cost you a penny to have his records sent to other hospitals for evaluation.
Maybe Primary Children's is doing what's best for Rhett right now. Mom instinct KNOWS best!!
If you feel that Rhett is declining and not getting care that he definetly deserves... take the leap of faith!
You are an amazing mother! Rhett and all the other kiddos are lucky to have you. We are our child's only advocate. We know them more than anyone else. We need to do what's best for them and follow our hearts.
Good luck!
I'm so sorry for all of your frustration. I'm very shocked that the doctors aren't concerned with Rhett losing so much weight. OMG! I would be flipping out on all the doctors. Man, that upsets me.
We do what we need to do for our kids. We would go to the ends of the earth if need be. Go with your gut. Always. Do what you think is best for you and your little man.
We'll be praying for you.
The Children's Hospital here in Denver has kids from all over the US, and all sorts of foreign countries. But in particular, Montana, Wyoming, Kasnas and UTAH!! Most of these kids have Medicaid too. It certainly doesn't hurt to get a second opinion, and TCH is 7th in the nation right now. They have a huge Cardiac program here, and a daycare and clinics just for DS children. They take these kids seriously and treat them as special cargo!
Fight on Pam!
Here is the website:
https://www.thechildrenshospital.org
He is getting his fight and his will to live from his mama...FIGHT on mama!!!!
Vicki (Owen's Gramma)
You know Pam, I had a heart2heart with Tommy's heart drs this visit at Seattle Children's and they finally listened. His pulmonary issues, double pneumonia and inpatient stays are just too much for them not to listen to. So we will be doing a catheterization to check the pressure to the lungs as Tommy's mitral valve has a moderate leak. This time they listened. Often I find the need to repeat myself and pray that care is given to him.
We LOVE Rhett. And always look to your blog to know your prayer requests and often times we read with one eye open and the other eye wincing because your family has been thru too much. Stay strong.
Is he on Medicaid? You talk a lot about unpaid medical bills. Trust me, doctors are not going to go all out and give 100% to a child who has thousands and thousands of dollars in unpaid bills to a hopsital and to specialists. Do I think that is right? Of course not but that is reality.
How about a 2nd opinion? Go to Boston,,, #1 cardiac hospital. #1 surgeon. Send it off to him atleast, get another opinion... They do wonderful things out there. IF Dr del nido cannot help Rhett, he will say it but it is worth a try. I would not trust that hospital any more, take him somwhere else. He is too precious for them to mess with. If you want the address, atleast for a 2nd look by someone that sees and has seen everything, let me know. I will email you the contact information.
The Docs think he is beyond help and we don't. We fight on for him. Keep it up! Love ya!
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