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Wednesday, September 23, 2009

God is Good!

God is great
God is good
Let us thank him
for our food.

This is a prayer I learned when I was little and every time I think, "God is good!" this prayer pops into my head.

In all seriousness GOD IS GOOD! I have to raise a chunk of money and fast to get Christian started back on hard chamber hyperbaric treatments. This is what he was doing in Phoenix and I've found a great place in Tucson where I want to get him started again. We do have the soft chamber but it's not as strong as what he needs, just using it alone. I want Christian to get the hard chamber treatments and the soft chamber at home so he'll get the maximum benefits. Then he can also use the soft chamber in between sessions, as well. need money to this because insurance no likey the alternative medicine. Not yet.

Anyway, we can do fundraisers and we will do fundraisers, probably a whole mess of them. But in order to get Christian to start as soon as possible I'm trying to come up with a plan. Well yesterday after Christian threw up three times in a row (more on that later) I was almost at my breaking point. I got a letter in the mail for an organization called The Prayer Child Foundation. I remembered I had applied to this organization last month. They choose a child or a few children a month to donate funds to for medical expenses. I started to open the letter thinking it was a "Thanks for your story, but..." letter and it was a check for $1000! Praise God!!! Now with the money we've already saved up, a few other donations and this check, we are over half way there...and in just a week! This just goes to prove that where there is a will there is a way. So cliche, but so true!

I take this as a sign that we're doing the right thing. I've struggled with this a lot because at times I just want to try everything out there. But what I struggle with is whether I'm getting in God's way. If He has a plan for Christian, am I'm getting in there and trying to control the situation? Or am I really trusting God and what He has in store for Christian. At times I'm almost excited (weird?) to see what God has planned for Christian because I KNOW it has to be something big. But other times I feel like I'm raising against a clock to find treatments for Christian as soon as possible. But in the end will it matter? With or without the treatments will it still be the same progress because God is in control? How will we ever know?

So I've come to the conclusion (and I'll probably have to remind myself of this over and over again) that if God brings us the opportunity, we have to take it. If it's right, it will happen with very little effort. If it's not right, we'll know it because it just won't fit. When I got the donation in the mail, I figured that was my nod that we're doing the right thing for Christian.

As for the throwing up, the vomit, the spewage. I'm so over vomit! Christian was doing so well when we left Phoenix and now he's throwing up after or even during every feed. At this point I'm having to plan appointments around when I think Christian will have his routine hurl. He doesn't seem bothered by it or effected. He goes on about being Christian. But my head is swimming thinking what possibly could be the culprit. I don't want to take this up with a physician because they will immediately suggest a fundoplication without even seeing him, which I don't even want to entertain because if they were going to do it they should have done it with the initial g-tube surgery. And that's all he needs is another surgery. I'm not even convinced it's acid reflux! So, no, I'm not entertaining that option right now.

There a forum that's supposed to be really good for these issues and I've been dying to get on it (Parent 2 Parent) but the link is down or my internet doesn't like it so that's a dead end. We could change formulas I guess, but now I feel like we're just shooting in the dark. It is just so frustrating.

And I've decided I hate our home health care equipment company. And I'll name names - it's called Preferred Home Health Care. I'll spare you the boring details, but long story short, they're holding up our ability to downsize Christian's trach. They need a prescription. Fine, I had the pulmonologist send one over. Meanwhile, we're almost completely out of suction catheters of which I ordered before we were out but the genius put the order in for one catheter instead of one box (100 catheters). I called and asked for more and the snotty lady said we're only authorized 100 a month. I said, "Well, my son doesn't need that much suctioning anyway but what about the kids who need suctioning like 20 times a day."

"Well, that's too much. Anyone suctioned over 3 times a day is too much. It will cause damage." - Snotty Lady.

Okay, lady, I didn't realize I called a Respiratory Therapist. I thought I was calling for supplies. My bad. Didn't know you doubled as an RT. Do the RN's at the hospital know this because they sure don't follow the 3 times a day rule. Oh yeah, and I found out they called the Pulm office to see WHY we needed smaller trachs. Umm, aren't you a supply company?! My insurance is paying so send the damn supplies!!! What does it matter why we're doing it? Now I'm being snotty. There's that lack of patience thing again. So now we wait. Didn't I say I would spare you the boring details? Sorry, I don't know what happened to that.

Positives...Christian seems to be gaining strength somewhere and I can't tell if it's his back, neck, or shoulders. He's not slumping over in his carseat anymore. We used to position the heck out of him with props and rolled up towels and I'd have him perfectly seated, look back 10 minutes later, and his head had fallen forward and there was no fixing it. That hasn't happened in about a week. He's actually been "holding" himself in a seated position without slumping forward. His little hands are opening, too! First the right and now the left. And we just got him fitted for hand braces, which he promptly threw up on. Nice. I don't know if it's intentional, but let's just say it is, he's been batting at things or almost trying to feel things. And his focus...that's been the biggest improvement, I think. He really locks down on things and has started to follow with his eyes more. It's not just a stare, it's really turning into active looking. But his curve...he curves to the right. We need to get rid of that and it will happen as his tone decreases. Curve, curve go away!

Anyway, I'm exhausted and spent from this day filled with vomit. I bet you're glad you came to visit this blog today. At least it's only Vanilla flavored formula vomit and not real food vomit. Then I'd be in tears.

Off to unwind and watch me some Dancing With the Stars.


Alicia said...

I am blown away by your story of the donation from The Prayer Child Foundation!! That is so AWESOME!! God surely does provide. And God also wants us to be proactive when taking care of our child's needs, just like you have been. He entrusted them to our care and He wants us to go to the ends of the earth if need be to do the best for them.

I wish I could give you some advice on the puking. Marissa still does that from time to time (she will go for months without puking and then start puking after every feed, when we haven't changed a thing in her diet or routine). She does not have a Nissen Fundo and, while her Pulmo and GI docs insist she needs one, her wonderful pediatrician stands 100% behind our decision for her not to have one. I find that Marissa's puking is usually due to very hard coughing (which is caused by the trach) or other GI problems like constipation. I hope you are able to find answers soon that don't involve a Fundo. Constant puking will wear on you very quickly. However, I am also glad it is only vanilla flavored puke and not the hot dog variety. Small blessings, huh?

Suctioning no more than 3 times a day??? WHAT?? She is off her rocker!! Before Marissa was wearing her PMV or her cap all day, we suctioned her way more than that! What are you supposed to do when the kiddo's secretions are gurgling around and obstructing their airway?? Besides, if you measure properly and don't put the catheter past the length of the trach, you will be able to get most of what is rattling around and NOT do any damage at all! I HATE supply companies. I have found the hardest part of this whole journey is having to deal with insurance companies and supply companies. UGH!!

Hugs and prayers to you Mama. You are doing a great job!!

Amy said...

OK yes P2P is down sadly right now, If you are on FB there is a page for Parent 2 parent, fo find it some of us are on it. If you can't you can let me know and I will see if I can find my link. Also if you are on FB and would like to add me let me know :)

Here is a site that may be helpful to you. The gal, Susan, who started this magazing is on P2P. it can help with all sorts of stuff. Its a wonderful tool, to say the least!

What else HHC ya most suck! sorry, A is the worst do your best to stay away from them. There is one company out there they EVERYONE loves and I'd love to use them too but they are not in-network. You can ALWAYS use more then one company. Check them out, give them a call see if they will work with you and your insurance, they are wonderful! OK so I have heard!

Also there is another group that you should be awear of the Oley foundation Lots and lots of good stuff.

Yes a change in formula could and can help. My son had a Nissen done with his Gtube BUT we had GERD, totally different story! A few things to run by the Dr. DGE (delayed gastric empting) could be one casue of vomiting, the formula/medical food, also to check for reflux tell them you want a PH probe study done. This will be a good test to see if it really IS reflux or something else.

Oh ya P2P is also a Yahoo group (for when the site is down). Let me ask on FB what is up I know many have asked whats up with P2P, but I haven't seen any real answers (not that I have been looking either).

Hugs and prayers you are doing a wonderful job taking care of your son!

Amy mom to Tyler

Amy said...

Let me try that again its

Guess I don't know my own blog...LOL sorry :)

minneymouse said...

more than 3x a day is not good? what medical school did she go to? every child is different, with Jasper we suction every 1-4 hrs... There might be a place online that posts extra supplies people have that they don't need, should you find you need them. has a listing as well, and the people there have a lot of great connections.

While I worry about someone doing a fundo sight unseen, my son has one and for him was the best thing. While reflux is one thing, the damage it can cause to the lungs is severe and with Jasper is life threatening. The parent board has been down, I dont' know why... againg the trach board has many moms with refulx/gtube and fundos, I have asked many ?'s there as well!

Wishing you all the best on your daily journey,

sunflourchic said...

that is an awesome gift from the prayer child foundation. god is's so funny because i do the SAME thing. everytime i hear that i think that in my head. lol! big hugs and kisses to both of you!

Brooke said...

How awesome was that check Shauna!! YAY!!! Things WILL Happen for you guys.....I just know it!! And as for that lady that was giving you a hard time....Poo-poo on her!! You stick up for what YOU know is right for your child!! And as for the suctioning suction AS the crazy lady think if you've met your THREE A DAY maximum....and your child has tons of mucus making it difficult for him to breathe....that you leave it until tomorrow....I mean..COME ON PEOPLE.....Sorry you're having to deal with such ignorance but you're one tough cookie Shauna!! :-) We all know where Christian is getting his fight from that's for sure!!
Think of you guys all the time!!! Hope your busy week went well and that Mr Christian gets his hard chamber treatments going super soon!!

Shauna Quintero said...

Alicia - I LOVE your blog and want to add it to my list on my site but I can't seem to find contact info for you. So please send me an email at P.S. I always love your comments! They are so helpful, funny, and insightful!

Amy - Thanks for all the great advice! I can't seem to find your contact info either so that I can add you on fb. Can you email it to me?

And thank you everyone for backing me up on the whole 3x a day thing! I knew that sounded fishy!

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