The downside to his new active lifestyle... he's been puking. I don't know if it's all the movement or demands he is putting on his body. It could be the increased medications. Please don't let it be declining heart function. He's been refluxing 4-5 times a day, it's not just a small spit up either. It's forceful and he's exhausted afterwards.
I changed his NG yesterday and it was the first time in 16 months that I have said, I never want to do that again. I'm pretty sure the tube was not the issue this time because even with a new tube, he is still puky. I also ruled out that he's feeling sick because, like I said earlier, this boy is ACTIVE.
Back to the topic of the NG tube. The reality of the situation is, Owen doesn't eat much. He is 100% tube fed and with a failing heart, it's not going to improve anytime soon. Every time I change his tube, my heart aches, but yesterday was different. He was mad at me. He knew it was me that was (for lack of a better word) torturing him. I think we're going to make the move to the G-Tube soon. Or, as I like to call it, the tummy button.
I got a call from Stanford this morning and they scheduled Owen for a visit on September 24th with cardiology. Unless, of course, something happens that he should be seen sooner. I mentioned to her my concerns about the tube and she is scheduling an appointment with the general surgeon while we are there. We, along with Owen's medical teams, feel it would be a good idea for Owen to have surgery done at Stanford and not Phoenix Children's. If something were to happen while under anesthesia and Owen ended up needing life-support, we want him to be at his transplant hospital.
We have an Appointment with Dr. Stock on the 1st and we will discuss the reflux, the ever-increasing medication and maybe even an Echo to check his heart function.
Owen was once again denied for the state's early intervention and development disability programs. They say that he is only delayed due to his heart condition, which doesn't count. So even though he IS in fact delayed in his development (50% in motor, 30% in cognitive/language) he won't be getting therapies or services. I am off to call the director of the services and argue my point once again. ** Just got off the phone with the director and she said "Sorry, but you should be GLAD your child is not Mentally Retarded and it is his heart condition causing the delays, you really shouldn't waste your energy on this." Then I hung up and cried. I'll call her director tomorrow. I love that I am my child's advocate, even if I am starting to sprout grey hairs because of it.Speaking of which... tomorrow I will say goodbye to my 20's and welcome my 30th year!!
25 comments:
I'm sorry to hear about the denial in the early intervention program. That must be administered by every state differently because in our state, AK, they still want to keep Natalie on the infant learning program even though she is caught up to everyone else. They said that "because of her heart problems" they want to monitor her and make sure she keeps up. So, my suggestion is to keep searching. Have you talked with the Pheonix Children's Social Worker? Maybe they have suggestions of programs that may be volunteer or that you would qualify for. Keep up the good work with the advocacy work. It's not easy. Glad to hear about Owen's increased movement, but that brings a lot more messes, right? ;-)
Angie
Well Happy Birthday tomorrow! I think you will find that your 30s will treat you well. I'm not so sure that program director knows what she is talking about when she tells you that you should be glad that your child only has heart failure, etc. What a jackass (for lack of better words). I hope you had/have better luck with her supervisor. Also hoping that Mr. Owen quits puking, and that you will be able to get a tummy button for him soon. I have read that a lot of Moms really love having it. Thanks for all your words of encouragement while we were in SLC. It was really helpful :) Jen
I am so sorry you hear about the denial. I just don't understand their thinking. You have a beautiful family and I keep Owen and the entire family in my prayers daily.
Happy Early 30th Birthday!
I would be ticked off with the lady too. My son was 5 weeks early and in the NICU for 5 days, they pretty much pushed early intervention on me and almost looked for reasons to keep coming, I can't belive they are giving you such a hard time. I hope your sweet Owen gets feeling better, it sounds like he is one talented butt scooter!
That really stinks about the denial of the program. I wish there was something I could do to help you. Never give up though, keep trying, as you said, you are your sons advocate. Owen is so amazingly adorable. I hope and pray he continues to be ok and hope these Doctors take very, very good care of him. Happy Birthday, try and enjoy. Praying for Owen!!
Happy early birthday! Cannot believe that Owen can't get approved for services--considering he has those specific delay you mentioned in your post. I'm so sorry that you keep running into road blocks. I'll pray specifically about this.
It's great to hear that Owen has been more mobile lately! It means he is exploring--which is completely normal for his age. :-) I'm so sorry to hear about the reflux issues that seem to be happening so often. I hope the doctor can help relieve that issue soon.
Happy 30th. You're still a spring chicken :)
That women should be reported. Head straight to the top to avoid sheer ignorance like that.
Poor little Mr.Owen, I bet the meds are the cause of his tummy upset. Keep him well hydrated and give him a big hug. Healing Prayers on the way.
Happy Early Birthday! Hopefully you get to go do something fun since this has been a yucky day. I like the others am shocked at the response from the early intervention programs! Is there a University close by? Often they will offer other intervention programs.... I know we have three different options for programs that provide services...Hopefully you can figure something you. I am sure you will continue to exhaust your resources. Way to go advocate mommy!!
Happy Birthday, dear daughter. Your life has been a joy to us...your husband and your children another bonus of joy for more years to come. The thirties will be great as owen's waiting and waiting will lead to his own special heart. Adventure lies ahead and we are in God's hands. Dad, Gigi, and I will be there all the way. Love Mom
The nerve of some PEOPLE!!! Oh that angers me!!!!! Glad Owen is still scooting around, Go Owen!!! Sorry about the puking thing :( Kylie started doing it also (I start thinking heart failure)I think we all do. I am wondering if its the heat? I dunno? Glad things are going well, sorry about the NG thing. One day he will thank you. Your doing a great job!!!! HAPPY BIRTHDAY!!!!
Sorry to hear about the intervention program...sounds like the girl you talked to needs to be alittle kinder!!!!!!!!!
Hate that he's getting sick...hope he starts feeling better soon! I can't imagine what it must of been like trying to change that tube with him thinking you were torturing him. Bless his heart and yours too! I know you're ready to talk to someone and hopefully get that one out and the g tube going.
Hope you can have a few days of fun and play!!! Keeping Owen in my prayers!
Oh and Happy Birthday!!!
Developmentally delayed is developmentally delayed whether you're mentally retarded or have a heart condition. Quite honestly, the diagnosis should be a non-issue, and he should be getting services. I am so sorry you are dealing with all of this. And, I do think you're making the right decision about the g-tube, but I wish you didn't have to wait so long (although I certainly understand your reasons for wanting to be at your regular hospital). The g-tube is much easier to deal with, especially once he heals from the procedure itself. My Lily dealt with a lot of reflux as well. We actually had to keep her g-tube "vented" into an open syringe so she could reflux into that and not put so much pressure on her tummy.
Happy 30th birthday!! I hope you have a very special day! (I highly recommend a visit to a spa and a massage.) :-)
Are you serious about Owen being denied? Ridiculous is all I have to say! I didn't even apply for Early Intervention, and they called me even before Beckham was out of the hospital after his transplant. Beck has also been accepted for the Ill and Handicap Waiver. It is not just for Handicap kids, but ill kids also (does Arizona have a ill clause)! I know that it is different state to state (because we looked into it if we were to move back to Utah, and Beckham would not be eligible there...bummer). I guess it's just one of those "I'm grateful I love in Iowa" moments!
Good luck! Owen is constantly in my prayers. That picture of him on this post is so cute!
-Kim
First of all - HAPPY BIRTHDAY!!!
Also, I am sorry to hear that the state is being so hard on the subject. I will continue to keep you in my prayers. I know that it will work out very soon! Way to be there for Mr. Owen!
Happy Birthday! I love that we are all celebrating our 30th birthday's! So FUN! I hope you have a great day, hangin with Mr Owen, and loving on him. He is so sweet. I love the pics of him, always smiling. What a nice boy. Hope you have a wonderful birthday!
Oh man, that sounds so stressful. I hope it all gets sorted and they start listening to all your points. Oh, and happy upcoming bday too!
Cxx
I'm sure its different from state to state but that is ridiculous about the early intervention stuff. Alan gets his therapy through the state. I really don't see what his diagnosis should have to do with whether he needs services. For one thing, honestly we really don't KNOW that the developmental delays will improve as his health improves, and even if they do, that's all the more reason for help catching up faster so as to perform better in school someday. Grr.. I know I'm preaching to the choir but you should really fight that.
He's still looking as adorable as ever.
I will definitely be keeping sweet little Owen in my prayers. I cannot imagine the ups and downs that you all are going through. I will pray fervently for him to get a new healthy heart soon.
I was always glad that Reed never knew that I was the one putting in his NG tube b/c I knew it would kill me to know he knew I was "hurting" him.
Stay Strong!
Owen is so cute. Sorry to hear you have been denied for services. Not sure who you have for your primary medical insurance, but we have Tufts, and they have a whole team assigned to medically complex kids, they helped us with everything. Maybe your insurance has something like that that they could get the ball rolling. Also what about a social worker or something like that at either hospital, or having the doctor/s write a specific letter of necessity? Just some thoughts... He truly is beautiful
PS Happy birthday
I am so sorry about all this. I will be sending sweet prayers Owen's way. I think going there for surgery is a wonderful idea.
I cannot believe they treated you that way. Good thing Owen has one amazing mama!!
UGH!! I don't get it! Why is he getting denied? i'm so sorry! I can give you a number for someone that just got approved the very fist time she applied and her son just has HLHS. I don't know if she did something different, but it's worth asking her. He has no other diagnosis, just like Owen, but he's not even needing a transplant.. It just dosn't make sense to me. And what she said to you is rediculous. Was the person you spoke to Lynn Headrick? Just wondering... I hope you got somewhere with the supervisor.
I'm sorry Owen is throwing up.. It's aweful, I know. Bela still pukes all the time.
I will be so happy for you when you move forward with the button.. you'll all be happier.
Hope you had a great bday yesterday.. This year will bring a special new heart and no more oxygen and NG tube! Your baby boy is always in our prayers..
avery
Happy belated birthday... I have been reading through your blog... which I am loving BTW... great colors, great fonts choices...love the graphics... just overall really a visual feast!..
But I am just heartbroken over your son. He is so very precious!! I love your devotion to him, and your WHOLE family. I am so moved by your story and your faithfullness... I am praying for you!
Many blessings-
Amanda
Hi! Just wanted to give you a link to a parent organization that helps people find out what services each state is legally required to provide for disabled/sick babies. They can help you figure out what to do next on your appeal. It's called Parent 2 Parent:
http://www.p2pusa.org/
It's parent run, so it might take a while for them to get back to you.
Hope they can help!
Why is it that when you call someone concerning your child, they just can't seem to see it from your point of view! My only connection to this is when I called the hospital when my son had 103.9 temp and they said they don't usually worry until 105. To me, that's just one measly degree but they treated it so blase.
I guess I'm confused by the "it's only his heart condition causing the delay" but it's still a delay. He should get help just as much as the next kid.
Happy Belated Birthday!! Sorry you have had to deal with so much lately. I hope you had a great birthday and that your 30th year brings much joy - you definitely deserve it!!
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