I have a sick kid today. A really sick kid. I’m hoping I can keep his lungs safe enough to keep him out of the hospital the next few days.
We took Parker in on Wednesday for an Upper GI. I worry about his Nissen when he throws up over it as easily as he does. Something as simple as throwing up can be life threatening for this kid of mine.
Two words: Aspiration Pneumonia.
An Upper GI is not the most trustworthy means of testing for Parker. He went through many of them when I was trying to beg someone to take the fact that I KNEW he was aspirating seriously. Finally, while sitting in the surgeons office, he burped up a mouthful of barium, and we had our proof.
Unfortunately by then the stomach acid had trashed Parker’s epiglottis beyond repair.
It seems as though the Nissen is still in place. We’ll meet with the surgeon soon to see what he has to say.
Yesterday was the FEES study. It’s where they stick a prob down Parker’s nose and watch as a feeding specialist tries different foods of differing thickness and we watch to see if Parker is able to swallow it without it going directly into his lungs.
Yesterday’s feeding therapist wasn’t our regular and was clueless. I kept telling them that I KNEW he wouldn’t be able to handle nectar thickened foods when the kid aspirates on his SPIT for crying out loud.
I was proven correct when a few minutes later Parker’s trach filled with the blue dye used in this procedure.
I have set up some appointments with a feeding specialist/speech therapist in Orem to work with Parker on pudding thickening swallowing while protecting his airway and then moving to honey thickened foods. In six months we try another FEES and see how things look.
One thing we were able to see is that Parker’s epiglottis still has no sensitivity, but doesn’t look as inflamed and cobble stoned as it once did, suggesting that he isn’t aspirating as much as he was.
It was suggested again yesterday that we move Parker from his crib to a bed that has the ability to be lifted at an angle that would address the aspiration issues. Being on night time continuous feeds is the perfect scenario for someone with as high of an aspiration risk as Parker as.
We turned our application into both our private insurance and Medicaid to see if one or the other would provide Parker with a Sleep Safe Bed (or any other brand, we aren’t picky) to help with the aspiration issues and keep him safe from his current fall risks in his crib.
We were told that here in Utah Medicaid has recently tightened up with their approval of these types of beds, providing them mainly for kids with seizure disorders, or kids that are totally immobile.
I’m thankful seizures aren’t a part of our daily life. Parker’s aspiration risks are high enough to be on the list of stuff that could kill him. Aspiration is a big cause of Pulmonary Hypertension and poses the life threatening risk of an aspiration pneumonia.
Our private insurance? Well, after talking to them let’s just say we have a greater chance with Parker’s Travis C. Waiver coming to our rescue……and that chance is slim according to the new acuity requirements they read off to me. We’ll know for sure in about 90 days.
Welcome to Utah.
How a bed that could keep Parker safe from falls and potential strangulation AND protect his airway AND help heal his lungs from aspiration assualts while helping with Parker’s Pulmonary Hypertension is considered to be mainly a ‘CONVENIENCE ITEM’ is beyond my understanding.
What we need doesn’t have to be NEW, or FANCY. I don’t care what it looks like, I just need for it to keep my kid safe.
Trust me, a surgery to repair Parker’s trach stoma is going to cost a LOT more than a piece of durable medical equipment, not to mention another week’s hospital stay for an aspiration pneumonia.
Too bad insurance companies can’t grasp that concept.
PS: Frustration is living in a state where so many insist you ‘host a BBQ’ for your child’s needs instead of relying on any government help, while at the EXACT SAME TIME having someone else spreading the lies that Medicaid covers everything, ergo we must be running some sort of scam.
PSS: Keep your fingers crossed, maybe send up a prayer or two that we are able to provide Parker with the items we need to keep him safe and alive Maybe whoever reviews his bed application might be in a really good mood and understand the necessity?
About Tammy and Parker
How are you sure that you know better than the medical professionals? I mean, sure, there are bad doctors and nurses out there… but they can’t all be awful. And you seem to spend an inordinate amount of time complaining that pretty much all pediatricians, agency nurses, pulmos, etc. are horrible, incompetent people that you are way smarter than.
Either 80% of doctors shouldn’t be practicing or you’ve somehow succeeded in alienating them at an alarmingly high rate. Food for thought.
Kaytee,
Please. I have a team of amazing doctors that work with Parker. I’ve worked with the same doctors for years now and have told each of them over and over how thankful we are for their help.
Ask any surgeon (ours is Dr. Downey) and most will tell you that upper GIs are often not accurate, and this proved to be the case with Parker.
It was Parker’s excellent Cardiologist who brought this to our surgeon’s attention, who set up this testing for the next day, even though the Upper GIs Parker had had in the past had all come back looking all fine and dandy. Parker’s then GI doctor didn’t believe he was refluxing, and neither did the radiologist.
Guess, what? He was.
I’ve said many times that I owe Parker’s life to his Pediatrician, Cardiologist, ENT, and the Pulmo we are working with. I recommend these professionals to other parents of medically fragile kids with special needs all the time.
But, as Parker’s neuro told me after his tethered spine surgery, a mother’s intuition carries a lot of weight. I know Parker best. I’m with him all the time where as many of these diagnostic tests are only a snapshot of that exact moment in time.
Now for agency nurses, well, all the experiences I’ve shared on this blog are true. I think we’ve solved even this problem by finding an agency that is willing to bring on our best nurse and allow her to be Parker’s Primary nurse. Something our current company was unwilling to do.
It takes time to gather the team that best works for your child. There will be ups and downs. And as I’m a natural worry wort, I’ll always worry. But seeing how we are following our surgeon from PCMC down to UVRMC, I’d say that proves just how much faith we have in Parker’s team.
Katyee, what do you get out of going around to blogs and leaving such mean spirited (and inaccurate…always inaccurate, Katyee) accusations? I have a pretty good idea of the number of people you have alienated by doing this. The numbers are vast, and your friendships few. I pity you. What else is there for me to do? However we each have our own agency to make our own choices, and the responsibility of the consequences of each of those choices. I’d be willing to bet your consequences come in the form of people avoiding you like the plague, even though you continually tell yourself, as well as anyone who will listen, what a great person you are.
Wouldn’t your time be better spent staying away from the blogs written by those you have personal issues with and instead focus your time on YOUR family? Food for thought.
It’s a simple fact. When you have a super complex child, the parent is the person who knows the most about the child. Doctors and other medical professionals may know lots about diseases, medications, and treatments, but they don’t know the subtleties of your specific child and his/her responses. Only the parent knows those sorts of things.
So yes, MOM KNOWS BEST. 99.9% of the time.
good luck with the bed, we were told the same with Junior when he was about Parker’s age and medicaid denied it. We were told they didn’t find it medically necessary. Thankfully in CA there is a program that covers certain items deemed medically necessary but denied by insurance and they quickly approved and purchased the bed. when Junior was about 8 medicaid then was willing to approve a bed.
Absolutely mom’s know best, docs may be professionals but we are the professionals in our children.
Interestingly the above “not so nice post” sounds nearly exactly like one I read on another blog. This person has far too much time on their hands if they feel the need to leave such comments.
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Heidi, it does sound exactly like that one doesn’t it? We plan to appeal if we are denied. And if that doesn’t work, Reed is thinking of trying to rig something up himself.
I think I have heard of that program you have in CA in Utah….or something like it. I need to look in to it.
xoxo
Tammy, I’m so sorry that he’s sick again. And yeah, Dr. D is an awesome doctor, isn’t he. Praying you guys can stay home. Crazy idea (yeah, maybe worth slightly less than you’re paying me for it – nothing), but can you get a regular hospital bed and do you know any handy woodworkers? I wonder if they could take a regular bed and then fashion something like the sleepsafe bed. I know that’s a lot of “ifs”. I wish I knew someone up here that did that kind of thing. I’m hoping that by the time Aaron needs it, maybe I can work on my dad to make one for him. But he doesn’t live anywhere around here. Praying for you guys!!!
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Kaytee,
Have you ever heard the saying that you have to kiss a lot of frogs to find your prince? Yeah, that applies to Health care “professionals” as well. I put that in quotes because even though there are a lot of professionals out there, there are also quite a few who really have no business treating children or adults. I have been told by doctors that our child isn’t worth their time to save, Thwt we should just let him die and start over….we have had nurses in our home steal from us, go through our personal belongings, fall asleep and sleep through our son’s alarms, or watching porn! I have a good friend who came home for work sick to find her nurse smoking cracks in the basement and another Thwt she found was living in a halfway house in the next state on parole for stealing narcotics! She had lost custody of her children permanently!
There are thousands of awesome doctors and nurses out there, pulling off miracles every.single.day. The reason you hear about the bad apples is because if nobody says anything about them, it could be YOUR child who isn’t worth the time to save next time around.
I am sorry that you have to spend your time going from blog to blog tearing folks down. You must be a very sad person. I hope someday you will find a purpose to your life other than attacking children with disabilities and their families. Good luck with that.
Interesting that the comment is almost word for word the comment I got just a few days ago!! And again, interestingly enough, like my comment, nowhere in this post do you mention bad doctors or nurses, just a fight about getting medical equipment. I think this “Kaytee” needs to find a more productive hobby!
Lacey recently posted..There will always be a fight!
Hi, I started following you a few weeks ago when I found your blog while looking for colored rice recipes. My daughter was born 6 weeks ago with downs syndrome.
As others have said, it is frustrating when medical professionals do not give your suggestions much weight. We recently had a situation like that. I may not have a PhD, but I am smart enough to understand most things explained to me and I can offer valuable insight that they don’t have and help make decisions.
I am also sorry about the insurance. That really doesn’t make sense. Please let me know if there is some kind of petition or something we can sign to help your cause. Have you checked with the National Downs Syndrome Society? I heard they sometimes give financial assistance for families that need things (or surgeries). They may also be a good place to look for getting in touch with a family who has a used one who would give or sell it to you.
Tammy,
It really yanks my chain when time and time again, I have had to be my son’s advocate. I personally believe that the doctors SHOULD be the experts, the doctors SHOULD be the ones educating me, telling me what tests they need to order, telling me what symptoms to watch for. Experience has taught me that what should be is not what is, and if I want the best for Noah, (and all of my other children), I have to educate and arm myself and take on the responsibility of being the expert on my son AND his Down syndrome. I hate having to be my kids’ advocates every time I go to the doctor, but it’s reality. As one special mom told me recently, we only have ONE patient (or in my case 7 patients) to heal, the experts have hundreds. Keep on keeping on – and I will pray that you will have grace when you need to have grace and fight when you need to have fight.
Praying for Parker,
Alyson
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