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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2 thoughts on “Hunting for answers

  1. So angry for you both! It should not matter what day it is, if you work in the hospital that’s part of the deal. It makes me so mad when I read things like this from you or Becky or SO many other moms dealing with this inadequacy of care!!!! While I hope Ty gets to come home soon, I’m praying that they can give you some answers- maybe if you leave the cleanup to them they’ll understand the depth of the situation??? Hugs to you both!!!!

  2. Hi guys!

    I hate to tell you guys this, but this is STANDARD care for CARDON CHILDREN’S HOSPITAL.
    I had the very same frustrations while Elisabeth was admitted for the same problem and process. Were there for four days..and only accomplished the clean out! We had to schedule all other testing on our own. Elisabeth ultimately lost about FORTY POUNDS before an endoscopy showed that she had an extreme case of PEPTIC ULCERS!!
    From a medical perspective, I can tell you that this is all about money. When they do the procedures on an outpatient bases…the doctor gets more of the revenue!!! And the patient, OUR CHILD .. suffer the consequences!
    I was in many heated debates with the providers there.
    I wish that I had better things to say.
    Good luck! Hang in there. We’re praying…

    Shirley and Elisabeth

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