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Monday, August 24, 2009

Onward and Upward

No dice.

We tried a capping trial today and Christian wasn't a fan. He seemed like he started to panic a bit. I wasn't surprised really because I didn't feel he was ready to cap yet. He's only been on the PMV for a week and only nonstop for about four days now. I thought it was a little ambitious to cap quite yet but I was willing to give it a try. I know he needs to strengthen those breathing muscles again and he'll be able to do that with the PMV. We'll try a few seconds every day and then a few minutes and then a few hours...you get the idea.

I'm not terribly disappointed by the capping trial. I would hate for him to be stressed out and agitated over capping because that could hold back his recovery and progress in other areas. So I'm not fighting that battle. Besides, he did a lot of really cool stuff today and he's had a lot of new developments in the last 5 days or so. In fact, he's tolerating his feedings a lot better and not throwing up as much. This has allowed us to shorten his feeds a bit, which allows for more time during the day where he's NOT hooked to a feeding pump. This is our playtime!

During PT this morning Christian was having tummy time on the ball and was face down. We were lifting his head for stretches and neck strengthening. If you let go of his gargantuan head, it usually plops right down just like a newborn. He even tends to throw it forward, which adds more force to the equation. Well today, while holding his head up, I let go and he slowly lowered his head and laid it down on the ball with the most head control I'd seen yet! It was very exciting. Christian also did some noticeable tracking. Not the "it's just in my head" tracking, but actual tracking. This happens when his eyes follow a toy or a light. I'm not sure he'll track to those boring miniature flash light the doctors always use, but he certainly responds to his bright yellow Spongebob.


It's also really exciting to see Christian so feisty. He wasn't all too cooperative in PT, but you could really see him "fighting" them with his little scowl and little growl if he didn't like something. He used to fight them with his tone sometimes, but he would really just lay there with no facial expression. Now you can really tell he's pissed and he's going to make sure everyone knows it. I love it! I don't care what emotion or communication he's showing. I'll take it.


I also spoke with the doctor's assistant today about possible discharge next week. He generically went over the discharge plan..."Well, the discharge plan is pending your [trach] training and long term health care coverage enrollment..."


So I said, "I've already been signed off on all my trach training and we're planning to get discharged using our primary insurance until it rolls over."


He said that sounded fine, he would confirm with the social worker - who's already on board with this - and we could commit to a discharge date. Sweet. If things go as planned, we should be discharged a week from Wednesday. Hallelujah!


The only thing I'm bummed about is the physical therapy. I spoke with the early intervention department (they schedule in home therapy for children with special needs) and she asked about how much therapy Christian is receiving. I told her five days a week and she told me not to expect that. It would probably only be more like once a week. Are you kidding me? So I told her that's fine, I'd use my primary insurance to pay for more. She kind of gave me the run around about how I could only use one or the other and blah blah blah. Budget cuts and more blah blah blah.


But, you know what...I'm not hearing her. I'm getting what my son needs and that's final. She suggested I just not tell the state run insurance that I'm using my primary insurance for supplemental therapy. Why is this such a big deal? Shouldn't the state be happy someone else is picking up the slack for their inadequacies and underfunding? I know this talk of insurance is just absolutely fascinating for you all but in my neck of the woods - pretty much every neck of the woods - this is called a clusterf*** and it's become part of my life. Am I going to cry about this? No. I don't understand it enough to cry about it. Am I going to get what I need for Christian? You betcha.

On another note, what I would like everyone that has to deal with us on a daily basis - more or less - to know is that our family has a new normal now. We are trying to take pieces of our old life and mesh it with pieces of our new life and it may not be what you expect or what you would even do if you were in our situation. But you aren't in our situation so you have no idea how it feels to have your child almost die and literally be brought back to life, not in one second, but over the span of many weeks, months, and years. I'm not going to ask for patience or understanding because this is the way it is so you are either along for the ride or you're not. If we fail to meet your expectations or fail to act the way you think we should act, I make no apologies. We're doing what we think is best for our children with the circumstances provided. We're doing the very best we know how to and that's all we can do. So welcome to our new normal.

Onward and upward.

19 comments:

Brooke said...

GOOD FOR YOU Shauna!!! You don't need to apologize to anyone for anything girl! You ARE doing what is best and if for ANY reason someone doesn't see that and take note....well....I just can't imagine!!
I'll continue to pray for strengthing of Christians respiratory muscles so that trach capping will continue to progress until he needs it NO longer!! And that WILL happen.....it's just taken the little trooper some time.
HOORAY for the head control! Way to go little guy!! That must have been such an awesome thing to see along with the tracking....WOWZA....he HAS made some improvements this week huh?? That has to be just so reassuring to you Shanua that he IS making progress and showing signs of "I AM going to continue to get better"!!! Good for him!!
I continue to pray for you and your family and your everyday struggles.....it can't be easy to be away from Manny and Gabe for so long and not be a part of their everyday life.....but I think the Quintero's are tough cookies and little Christian is proving....so I know soon you'll be all home together!! A week from Wednesday...COOL!!! Please know you're in our thoughts constantly! Everytime I look at my bracelet I think of you guys!! And every time I accidentally pull it off when changing gloves at work (which is QUITE often) I think of you!! LOL XOXO

colekd said...

You are just awesome Shauna, Christian too!! Every post I read of your's is truly amazing. You were so meant to be Christian's mom, and you are doing an oustanding job of it. He is so lucky to have you & your positive attitude.

ferfischer said...

New normal indeed! Amen to that. And most people, if they know, will be in awe of your family. (at least that's what I like to think) because you're now extraordinary - not normal at all, but BETTER than normal! I have some thoughts about the in-home therapy and funding and blah blah blah, but I think I'll write you a message instead of taking up space here!

maz said...

Is someone giving you grief Shauna?? Am I going to have to get out my beady, evil eye??!! Where's the fish slap emoticon when you need it?! Everything you said...absolutely right! Live your life as you see fit, no-one's business but your own, no-one's two penneth required, unless asked for! You and SuperC have been doing so, so well and as you say onwards and upwards!!!

Amazing about the head control and the tracking. So happy for him and you! And I think Spongebob should surely be one of the standard equipment Dr's use, rather than the flash light (yawn! don't think I'd bother looking either)! Ack about the capping trial...but slow and sure wins the race!

The insurance stuff all sounds like a headache you don't need. Hope they all get their butts in gear and everything gets organised soon. A week on Wednesday...woo hoo!!!

I saw this on a friend's FB page and thought of you and Mr Man...

“Impossible is just a big word thrown around by small men who find it easier to live in the world they’ve been given, than to explore the power they have to change it.
Impossible is not a fact. It’s an opinion.
Impossible is not a declaration. It’s a dare.
Impossible is potential.
Impossible is temporary.
IMPOSSIBLE IS NOTHING.”

I think its a quote from Mohammed Ali - a fighter, just like Christian! Thinking of you guys....

Maz
xxx

Rochelle said...

As you said, the capping trials will continue and as Christian is able to tolerate more, he'll eventually get the cap full-time. No reason to rush or upset him. He's made amazing progress so far and will continue to strengthen those little muscles. Keep on keeping on! I hope you are successful in getting the extra therapy that he needs at home. There are lots of things you can probably do yourself with him (pay close attention to the therapists and what they are doing with him, make notes, plan to have your own therapy sessions with him at home) while you sort all that out. And, who knows, maybe there is a therapist in your area that would volunteer some time to help out? We'll be praying about that, too, along with the capping trials. Have FAITH. Kiss Christian for me and tell him to keep up the great work he's doing. Yay for the head control and eye tracking! :) Hugs to you, Shauna!

Eliisa said...

I hate that you have some people who are giving you trouble. How DARE they? They have no idea what it's like to live in your shoes, nor would you or anyone with that on them. You are the bravest, most loving, most persistent, most positive mama bear I have ever seen. You keep fighting for your boy, and screw what other people say.

You have the admiration of more than a hundred people you know, and hundreds more you don't know. I still get comments on my facebook whenever I post about Christian, with people saying they're so glad he's doing better, amazed at your strength and perserverence, etc. We all LOVE him, and love you too.

I'm glad you're not going to get discouraged about the capping trials. Christian will do it when he's ready. The PMV is a great intermediary, and he'll get there!

Sorry insurance hassles are causing you problems...I hope you can get it figured out. In the meantime, keep the faith, and know that people all over the world are constantly thinking of you, your boys, your husband, and that sweet little girl you'll meet soon. :)

Makenzies Miracle said...

Shauna,
As far as EI is concerned..... do NOT mention anything about other therapies to them again! Just go along with what they tell you and do what you need to do with your private insurance. What they don't know won't kill them!

I am sooo proud of Christian! And YOU!!! You WILL get it all figured out! It just takes time!

Suzanne said...

I can't believe anyone's giving you trouble. Good for you for standing up for yourself. They're incredibly selfish if they're not being understanding about this. You have enough to deal with without having to deal with guilt trips.

You're doing fantastic! You're such a great mother. And Christian is astounding! The progress he's made is so wonderful. I love the fact that he's communicating with you again in his own way. He's doing so great!

BTW, I read every day, I just don't always comment. I'm always thinking of you and praying for you though.

Alicia said...

Hooray for the head control, tracking and expressing emotions!! Way to go Christian!!

I am glad to hear that you are not discouraged by the capping trial not going well. Capping is very difficult, especially since they are still having to breathe around the trach tube that is in their throat. One thing you may want to consider before you try capping again is downsizing his trach. I don't know what size he has in right now, but going one size down makes a lot of difference. Marissa had a 3.5 Neo Bivona since she got her trach over two years ago. When we started trying to cap her with that size in, she struggled and we gave up for the moment. Then, in May, her ENT thought she was stable enough to downsize to a 3.0 Neo (the next to smallest size) and we started capping her and she did a lot better. Just a tip, you will need to get the smaller size back-up trachs (for Marissa it is the 2.5, THE smallest size) and smaller suction caths. The 8fr caths work with the 3.0 but are too big for the 2.5 so we got a supply of 6fr just in case. Hope I didn't confuse you! :)

I am so glad to hear that you are getting closer to discharge. Just keep on fighting Mama! I love your attitude! I know of a special needs mom that calls people like you Warrior Mamas. The kind of mama that is willing to fight the system every step of the way if neccessary to get what is best for her kids. You sound like that kind of person.

Onward and upward!

Reece said...

Amen to all that!!! Good for you for not allowing any negative energy break your stride!! I can tell a difference in his eyes!! He is making so much progress! I have so much love in my heart for you and Christian even though I have never met you in person. You are doing so incredibly awesome........keep up the good work! You and Christian make a perfect team!!!!

Bianca said...

Very exciting I'm sure you're desperate to be home with your family! Congratulations on all you've been through and have accomplished Shauna you are an amazingly strong person. Just one more week and then Home Sweet Home!!

Beth said...

You're doing amazing Shauna and you have no room in your life for people that try to drag you down! Keep going girl - you are one strong momma and are fighting for your boy!!
xo Beth

Emilia's Mama said...

You tell 'em, Shauna! I am so in awe of how strong and determined and positive you are (it is how I hope I would be in the same situation). You are a remarkable, incredible woman and Christian is such a lucky little boy to have you by his side. He has made such great strides and I can feel only good things ahead for you and your family.

Shirley said...

What is with these health insurance companies, anyway? GRRR.

Christian is so blessed to have such a warrior mama that will champion for his rights. And Christian is so amazing for making so much progress. And I'm sure he'll let everyone know when he's good-and-ready to have his trach capped...all in God's time. It's so awesome that he's able to give everyone a piece of his mind, when he doesn't like something! You go boy!!

lisas said...

positive vibes. positive vibes. positive vibes.

i'm so proud of you and christian.
i went back and looked at old pictures and came up to the present. the difference is amazing! christian has come so far. keep fighting you two.

onward and upward indeed!

love, lisa

Mel said...

Way to go Shauna. Obviously you have a new normal and many adjustments to make to your life when you get home. That is just common sense. Anyone who expects more or the old way is not thinking soundly. Do what you do best--which is what is best for Christian and your family. You are an awesome mommy and Christian is an amazing soul. Hugs from the Northwest. :)

manuel said...

SOME people just think they can make all events about them. Dont waste your energy or time on those people. You have all of us( Your husband, SOns, Daughter, Daughter on the way, and hundreads of followers) supporting your choices. I want to let those people, SHAME ON YOU, for making our situation more difficult. But thanks for showing us your true colors, WE see who we can DEPEND on. Thanks for adding fuel to our fire of proving naysayers wrong. No one can take our faith in GOD away, ever. I do hope God blesses you and you Make the right choices in your life. God has Help us with ours.

Love you all for your support. My family is close to being together again and i get emotional when I think of it.

Thanks,

Manny Q

Clara said...

Shauna,
You and Christian and your family are in our prayers.
We feel so close to you and so like part of your family after reading your blog and keeping up with all of your hard work and achievements with and for Christian. God is blessing you and helping you and is also leading you into our lives and helping us grow. Be proud of yourself and your Mama Bear attitude. It is what your son and family need. Please take care of yourself too so you can keep up your strength.
Never feel a need to apologize for doing what needs to be done. Keep the negativity and nay-sayers out of your life, you need positive support. From all the above pots it looks like you have hundreds if not thousands on your side and praying for your successes to continue.
Keep up the wonderful work! You and Christian are awesome!! (And I don't mean to leave out your husband and son, they are your main support and keeping the home fires burning for your return. They are awesome in their way too!)
I hope to meet you some day in person and give you a big supportive hug and help you out in any way I can. Your faith and trust are truly amazing!
Clara

Jendioguardi said...

Amen!

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