Hunting for answers

EPICLY LONG Jessie Post ahead—if you read to the end- thanks in advance- Love you peeps and am grateful for your comments, thoughts input and support more than I could ever express. I am also going out on a limb and posting pretty personal medical battles that my son is enduring-I am very mindful of and respect his privacy whenever I post- so I have asked him for permission to write about this and he is ok with it.  He says me sharing about the concerns on my blog so that we can keep our loved ones in the loop and connect with others that may help is actually good.

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I write this post from Cardon Childrens- where Ty is now in his 26th hour of hospital clean out from a major bowel impaction (this is the first time he has been so impacted from his bowel issues that he required hospitalization for assistance)–We tried our normal home remedies for 24 hours prior to admitting defeat and coming in for professional help. That defeat has been soul crushing for me- especially since all we are currently doing here at the hospital is everything we were doing at home– just slightly more frequent. ( I just wont have to do the laundry that we are creating so I guess there is that)

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I have so many things I want to say about this all- but not sure where to begin- this is going to be an exhaustion fueled rambling novella for sure.

Hospital nursing and tech staff so far are good (our current nurse is actually amazing) but I am the one primarily taking CARE of my son—they come in for vitals and to administer meds and pretty much to see if there is anything else we need- I handle the bathroom trips- I mop the floor when we can not make it there in time- I change the linens and help him clean himself in the shower after every trip to the toilet—if it was all left to the staff we would have to call them every 5 minutes—I know we could have chosen to do a clean out at home- but I feel more equipped to get it done correctly and completely here-so I feel compelled to be as involved as I am (besides I feel a sense of guilt being here at all) Plus I wanted to advocate for this visit to be more than just getting him to poop clear- I needed it to be the time where we work towards real answers and stop with bandaids.

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Part of me opted for admisssion for clean out rather than continuing to try at home because I figured we could get the ball rolling on investigating issues deeper and begin collecting information through tests. If we are gonna have him admitted, hooked to an IV, getting cleaned out and already here in the hospital- why not make the very most of the resources and people in the building- why not schedule the colonoscopy and endoscopy that our GI will want in a week when we follow up with her so we can be ready with info and not make him go through a clean out for the procedure again- The hospitalist and the GI Doc who came in for consult though are “adequate ” at best and are providing their very best “holiday weekend baseline minimal care” and have made that bluntly clear to us. I do not know that my patient advocacy would have been more effective on a week day but based off of a very heated conversation with both of them that is exactly the sentiment they each expressed-repeatedly.

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I really wanted a neurological consult as well- but it has been made very clear to me that my son will be receiving the least staff involved “care” during this visit possible-anything beyond basic clean out is considered elective” and will have to be scheduled later after discharge. We have been flat out denied a colonscopy/endoscopy because — and I quote– “It is a Saturday on a Holiday weekend.” So the best course of treatment for my special needs son who is already in the hospital, already undergoing a clean out, already hooked up to IVs is for him to undergo ALL of that again in 2 weeks once his GI decides that is her next step- all because of the day it is on the calendar. I love healthcare.

Things need to change for Ty and a real good hard look at the things we have truthfully avoided (dietary and naturopathic options) are likely our best hope right now for that change. Along with dietary changes I need him tested for neurological issues related to these impactions. I know that gut issues and autism are common and many of our kiddos on the spectrum suffer with bowel issues- but I feel like many of us all get the same cookie cutter treatment plans and it can not be all the same like that–everyone is different our spectrum kids especially. I truly think something else may be going on with his nerves and his muscles that exacerbates this and now that he is 15 we need to be moving towards treatment and not continued dependence on care and meds that only work on the symptoms and not treating the actual issue itself. (whatever that may be) This should have been something we approached long ago but to be honest were lazy. I will no longer settle for more of this cookie cutter B.S. reactive treatment plan we have followed for years. I have done so because it was easiest and I could justify it using blind faith in a system I have always questioned (except with regard to this issue apparently)–somehow I fooled myself into just saying “this is what doctors are telling us to do- they know best”—but I need to yank myself out of that denial and buckle down for the real hard work if I want to see my child heal. It boils down to I want answers or at least to be on a path towards answers and I really expected to be able to successfully work as a team with the caregivers on this campus during this admission to move forward in that direction. The LAST thing I expected was for a medical professional to flat out deny a course of action simply because of the day of the week it is and nothing else.

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During this hospital stay I have also discovered that for Ty to eliminate urine he has to push down on this bladder—I asked him if this is an always thing or only when he is constipated and he said “always–that’s how I start my pee” Since it never would have occurred to him that it is not normal to need to press on your bladder to initiate that, it has never come up as a concern before (and I don’t routinely watch my 15 year old pee-so would have not known had it not been for this clean out.) So that is now reason #2 for wanting a neurological consult as well to see if maybe he has some issues with nerves in his pelvic region where his faculties are just not responding etc—this would explain a LOT of why he tends to get backed up easily-maybe he has no muscle control–match that with him being overly stimulated but any sensations of even the softest or most liquid stool coming out (what we may feel as “uncomfortable” or just pressure and he is in tears crying saying its an 8 on the pain scale) and all of this is a recipe for withholding.  That will have to be pursued after discharge though- The most we may get is possibly a urology consult and that depends on who is on call on a Sunday of a holiday weekend.

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My heart has ached this visit because daily I see the independence he is capable of having as the high functioning individual that he is—and then in this environment how utterly dependent on a caregiver he is when faced with these trials. So then not only do we have the medical scenarios to work through in and of itself- but I have to be “training him” and using this as a life skill training session which just adds to the exhaustion (I know I do not HAVE to– but one day I wont be here and he will need to know how to be his own advocate without a mother hen hovering so I kinda do HAVE to that’s part of parenting with special needs) So finding the right balance of my just caring for him and showing him my love in that way and also using things as teachable moments so he is becoming equipped for life later is utterly exhausting. I do not know how those of you with kiddos who manage life living with consistent medical issues deal with hospitals regularly- in some ways even live most of the time in them. I am only 2 days in since we arrived  (3 dealing with the issues if you count what we tried to do at home before coming in) and I am just spent.

I do not know exactly where to go from here- but I suspect I will be reaching out for direction in the autism community from those who have travelled the dietary and naturopatic (probiotics/supplements etc) routes with success for their kiddos gut issues. I am a needle in a compass furiously spinning looking for true north—anyone with a map that has been successful for them I would love a glimpse.

Thanks for reading.

Jessie

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Run for the Hills!

If I could run- that is exactly what I would have done to get away from the orthopedic doctor that we visited with on Monday.  I can not recall a time when I have felt more belittled, squashed and just plain dismissed by a professional than what happened at this visit.  This post is long, long, long winded—so if you make it to the end- bravo and thanks.

Let me preface this all to say that I took the quickest appointment with the myriad of orthopedic groups that I called last week so that I could get seen prior to heading on a 5 day girls trip to DC later this week.  I got a ton of great recommendations from friends that have had similar knee surgeries or issues as me so I started by calling each one of those offices- many of them could not see me until Mid to late April- one could see me the evening before my flight and one could see me on Monday (but not the doctor that was recommended to me by friends- a different doc in the group.) So I took the Monday appointment because I just needed to get in somewhere and hopefully get a brace if nothing else and then when I get back I can seek further opinions if needed.

I am going to refrain from posting the name or the group on this blog-for now– if I get around to posting a yelp review I will link it, but I tend to be a lot more wordy on my blog so there is more room for emotion to show through here than on Yelp which can strain from the overall meat of a review.  **Yelp review added- Check it out here For those asking- my bad experience was at The Orthopedic Clinic Association (TOCA) and with Dr. Zoltan.

I guess there were red flags from the beginning that I should have seen:

One- all other docs were booked up and this one had a quick opening

Two- when I checked in at 9:30am for my 9:45am appointment I was told there was one other patient ahead of me. I sat down and that patient was called back, but then an older gentleman walked in the door (the office staff all greeted him kindly as it seemed he must be a frequent flier at the office) and I hear the receptionist tell him that she does not have him down for an appointment for this day- but she would try to get him on the schedule.  Next thing I know- he gets called back to go see my doctor at 9:40am.  It was after 10 before I was taken back to an exam room for my 9:45 appointment (that I DID have)

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When the Doc finally came in about 10 minutes later he was very too the point- asked me what I was in there for and as I began to tell him a very abbreviated version of what happened he cuts me off and says “how are you right now- what is going on right now- how do you feel?”

I was so caught off guard that I blabbered out “well to be honest, right now I feel pretty good- I have very little pain and I mostly have range of motion issues and problems with certain movements.” I had not even told him exactly what injury had occurred so all he had heard was I was on an obstacle course inflatable on Saturday March 28th and the inflatable had sunk under me- Jason pipes in- “Jess you do have pain- especially with certain twists and pivots.” Doc motions for me to climb up on the exam table ( via  a large pull out step stool) and as I am struggling (I assume part of his dx of me was to watch me and see what I could and could not do) Jason finally stands up and offers to support me so I can hoist myself up. At this point I say “I do have an MRI disk that we gave to your office- it says I have a completely torn ACL and a 2nd grade MCL tear, at which point I lay down and stop talking because honestly it felt like he was not listening and or didn’t really want to hear me talking anyways.

He then proceeds to “scold” me for having an ace wrap on, telling me I will get blood clots and to not use it anymore” (I had been following the other doctors recommendation and it was providing some relief, support and peace of mind) He then tugged on my leg and knee and did a few massage probes- none of which was anything that sent me into my “pain” moments- he never turned my knee into the “pain” and at one point where he was massaging was “tender” so I said so but other then that really nothing else.  He asked me “what kinds of sports did you enjoy prior to this injury?” and I said- “I have been doing water aerobics” and he says “good” then he walks towards the door and says “I am gonna go have a look at the images” and walks out the door total time that passed had to of been no more than 3 minutes- if that and most of that was because I was struggling to get up on the table.

I turned to Jas and said “you don’t like him do you?”- cause I was already feeling very underwhelmed by his demeanor personally-but I also know that sometimes the best doctors are not the most personable.  Jason sort of shrugs and says “not for me to decide- as long as he is good and professional at what he does and makes you comfortable.”  Doc comes back in and says he is just waiting for the imaging center to send over their report of the MRI reading and Jason reaches into our folder and hands him our copy-  He disappears again and when he comes back he says:

“So I do not think you have an MCL tear- if you did you would be in pain- even today” (not because in reviewing the images of the MRI he sees no tear- but because I was not showing him the pain he felt I should have been showing)  He then says “I also do not think your ACL is completely torn- it is torn- but it is likely that you had that tear long before this injury and have just been unaware of it”  WHAT????– oooookay? I say “well I did hear and feel a pop when it happened” and he just goes “so?” and shrugs- then he proceeds with  “So I am not recommending surgery right away- I am going to aggressively rehab you with physical therapy and we will see where you are in 2, 3, 6 months”  I was still sort of stunned that his dx is so different then what 2 other medical professionals agreed was wrong. I already knew I was going to at minimum get another opinion (so technically a 4th opinion) but now having 2 saying one thing and 1 saying something different I may need several more opinions.  It felt like he was wrapped up and heading out so I snapped out of my stunned daze and I said to him “I have a few questions- so he says “ok shoot”- I mention that I am going to DC and I want to be extra cautious- so if I can not use an ace wrap can I get a brace? ” he replies “Yup, next?” – I then ask, if it is possible to get a temporary parking permit mostly for use on my DC trip- again to be extra cautious- and he says “Sure- I don’t have any DC paperwork though” and he turns to walk out the door.  I tell him DC recognizes Arizona’s permits so he says “sure- anything else?” At this point he is half way out the door- so I turn to Jason who is just about purple with fury and I say “You don’t have any other questions do you hun” Jason just shakes his head because he already recognizes this is all futile with the man so why waste anymore breath. Doc then points his fingers at Jas like a little gun, gives him a wink and turns down the hall.

And that was our experience with this Doc.  Jason immediately says – “no.” and I knew exactly what he meant and agreed.

A PT comes in to fit me for a brace and a nurse comes in with paperwork for the physical therapy plan and some referral form saying that he was “referring us to such and such doc” Jason says “what and who is this? He never mentioned anything about any referral.”  So she says- “hmmm let me go check”  I get my brace on and nurse comes back and takes the referral saying “never-mind” and as the PT is about to leave he says “Any questions?” to which I exasperatedly sigh “not for YOU”  Jason mutters- “so is that it? are we to just leave now? We really do not feel like we have been taken very well care of at all here today?”   PT says “yup he just wants to see you again in four weeks”  to which I say “THAT will NOT be happening- we will NOT be coming back here again.”  PT sort of shrugs and walks away and we head towards the exit.
The office staff pipe up “do you need to make a follow up?” and I say “well Doc wants one- but we will NOT be doing that.”  This of course sets them into “fix it mode” likely because we are within ear shot of the lobby just over their desk- they stand up and walk over saying “is everything ok” and Jason says- “not really.”  I finally turn to her and then- everything I had been holding in comes out and I lose it.  I start crying and blubbering about what an awful experience I had just endured- I felt rushed, not listened to, like I have more questions than answers like I was annoying the doctor and he had no time for me- especially to explain how he came to a different dx than what other professionals have told me etc.  She asks if she can get her supervisor and I say “its not going to help- we are not coming back here ever again”  She keeps on saying she hates to see me leave as upset as I was and I tell her “well it is what it is- this is how I feel about what just happened nothing is going to change that”- and we walk into the lobby.  At this point the lobby was packed and almost everyone was staring at me- so I just grin and say- “Run- do NOT go here.” and we leave the building. From the moment the doc had walked in to the moment we were walking out was all of 23 minutes–(this included him reviewing the MRI, and the PT fitting me for the brace and my unloading on the office staff etc— I know because Jason had posted the picture of me on his facebook a few minutes before the doctor walked in and  I texted my BFF about it while in the car driving home so there are time stamps.

I do feel a ton more confident walking with the brace on so at least something good came from the visit and the specialist co-pay.

In the end he could be absolutely right- maybe I am not as injured as the MRI imaging X-Ray tech who reads MRIs for a living  said- or the Urgent care doctor that was the 2nd read of the images said- maybe that is why it hasn’t seemed to be as sever as what others have experienced- but what if I just have a different pain tolerance level or what if my fat is cushioning it all and providing support and lessening the pain, what if I also did nerve damage that makes the pain less then it “should be?” Even so-  he did at least agree that I do have a tear of some sort on my ACL (but never said what degree he felt it was)- I wish he would have been a better doctor that would have sat and showed us what he was seeing or was not seeing on the MRI images so we could understand.  I don’t think that is too much to ask.

So that is that- I will make a few additional appointments for when I get back from DC and we will go from there.

It is likely he is right- I am not as badly injured as the initial reports said- after all I am feeling really, really good and everyone is always so surprised how little pain I have been in- but after his rushed attitude and his demeanor- we have a hard time just trusting his 10 minute review of the situation.

Home loans SUCK

Me when I hear people saying that they are just “giving away” home loans to anyone now and we are headed towards another economic collapse due to poor lending practices…

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Obviously non of those talking heads has ever tried to get a home loan as a self employed real estate agent working on commission. I could be cliche’ and say they want us to sign away our first born child, but THAT is relatively “simple” compared to what they actually NEED us to do…things like provide account history documentation that only has transactions that contain the letter z in them (only a SLIGHT exaggeration on that one) or they need for us to will the IRS to send documents through the US postal service in a reasonable time frame after they have been requested multiple times (no exaggeration there)

10 Things I would rather do then ever have to qualify for another home loan as a self employed real estate agent paid on commission ever again:

100 belly flops like this

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Walk a mile in these shoes (or even 5 steps)
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Hire this guy as my trainer

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Ride in this elevator

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Have a baby that doesn’t like kisses

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Stub my toe every day

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get stuck without toilet paper

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Eat the heel

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Accidentally touch GUM under a table in public
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Find this

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So here we are in the 11th hour…supposed to be closing on our new house on Friday and we still are clueless as to what the status of our loan is.

incredulous

>What’s been done the past 109 days?

>Ask that question of your AZ State House of Representatives and Senate officials and you probably will be met with a blank stare as they try to come up with something to say. Its going on 110 days for the 2009 Arizona State Legislative Session and close to 1000 bills are sitting in limbo. Forward progress for anything that isn’t a partisan platform has been laughed into a cave as ridiculous and it’s getting down right infuriating. There hasn’t been anything worthy of screaming “major accomplishment” from the capitol since the end of January. (and that’s only if you call “balancing the 2009 budget” on the backs of individuals with disabilities, students and the most vulnerable populations a “major accomplishment”.

Seriously what is going on?

Don’t get me wrong I love that the Dems have gone statewide into the communities both metro and rural to show how important public input is to them. Having attended several of their sessions and spoken my 3 minute speils personally I am very grateful. BUT, it was the same audience, the same panels and it was pretty much preaching to the choir. The Dems panels really did turn into big soapboxes. The GOPS “townhall/forums” seemed to be nothing more then pandering to the corporate community (their first “public meeting on the budget” was a presentation to the Greater Phoenix Economic Council -GPEC) Thats sure as heck one way to avoid staring down at a row of wheelchairs or listening to ASU students and public school teachers “whine”. Don’t even get me started on the forum that had over 200 in attendance and they allowed 15 minutes TOTAL for audience members to speak.

Surely good things for Arizona are getting done though right? Sure doesn’t read that way if you follow any of the officials on facebook or twitter. Granted status updates are a snapshot in time and I realize that everyone has a life outside of work. But even @aplusk was able to harness the power of twitter for the greater good. How can I not sit here at nearly midnight with tears of fury after having spent weeks trying to mobilze ANYONE into action and log in to see the majority whip is enjoying music in Memphis tonight (THURSDAY night) geeze 3 1/2 day work weeks..sure are rough, I guess thats what we get from them when they convene and adjourn after a whopping 44 minutes. At least they all bonded over their annual House vs. Senate softball game.

BIG HUGE SIGH

>A slap to remind us we do live in Arizona

>
Yup we have already had a triple digit temperature day here in the good old desert. We tried to relish in those lovely spring days and chilly nights, and tried even harder to not rub them into our northeastern friends who are still shoveling snow. Apparently the gloating has caught up with us now! But even with the heat that is radiating from that giant orb in the sky (subsequently making little dollar signs appear in a/c repair guys and the electric companies eyes)–we still live in a beautiful place. I have decided I need to remind myself of this daily so I can survive what is looking like a longer and hotter summer then we have had in recent times. So to do that I took a lot of pictures of the sun bidding adieu a few nights ago. Man I love living here…remind me I said that when I go for a dip in the pool in June and it’s like stepping into a giant hot tub.

>A slap to remind us we do live in Arizona

>
Yup we have already had a triple digit temperature day here in the good old desert. We tried to relish in those lovely spring days and chilly nights, and tried even harder to not rub them into our northeastern friends who are still shoveling snow. Apparently the gloating has caught up with us now! But even with the heat that is radiating from that giant orb in the sky (subsequently making little dollar signs appear in a/c repair guys and the electric companies eyes)–we still live in a beautiful place. I have decided I need to remind myself of this daily so I can survive what is looking like a longer and hotter summer then we have had in recent times. So to do that I took a lot of pictures of the sun bidding adieu a few nights ago. Man I love living here…remind me I said that when I go for a dip in the pool in June and it’s like stepping into a giant hot tub.