I Quit: Raising a Child with Complex Health Needs

posted in: Apollo | 22

I can’t tell you how many times, as the mother of a child with complex health needs, I have uttered those words to myself.

I quit.

I’m finished.

I’m done.

Not done with Apollo and not done with his complex health issues, but done with the twisted, often inefficient bureaucracy of health care.

This face could be the poster child for messed up medical care, medial record errors, missed diagnoses and unneeded suffering.

Yesterday I fielded a handful of calls from Seattle Children’s hospital. The first one was to cancel Apollo’s appointment with his GI doctor. I made this appointment (weeks ago) so the doc could look at the scar tissue around Apollo’s stoma. It is thick and causes his g-tube to hang out of his stomach at an angle. The friction then causes irritation and sometimes bleeding. The receptionist told me they were canceling his appointment because he needed to see a general surgeon instead…

So I called and made an appointment with the general surgeon for Friday morning…and then called the GI nurse (the same nurse who we have been working with since his g-tube was placed). I wanted to know why he no longer needed to see Dr. F (and who exactly was deciding if he needed surgery or not). The nurse informed me that Dr. F just takes care of GI issues, and this wasn’t a GI issue…which begs the question of who then is in charge of the Apollo’s  g-tube? Since Apollo’s appointment with his GI doc is now cancelled, I told his nurse what happened on Friday when the resident removed the water from his tube and it fell out– necessitating a trip the to Children’s ER. She informed me that removing that small amount of water could not possibly have made it fall out…and I insisted that it had. I  told her that in over two years of having the tube it had never just randomly fallen out.

And there our conversation ended in a stalemate. All I want if for them to admit a mistake was made (removing the water and causing the tube to fall out) and an apology. An apology for making Apollo suffer more pain and more trauma. You what else would be nice? Letting the resident know, so he doesn’t make that mistake again.

But it won’t.

And that’s why I want to quit. Quit dealing with half a dozen doctors that never talk to each other. Quit dealing with medical bureaucracy. Quit dealing with medical professionals that don’t listen to me. That don’t think I can be knowledgeable and informed. Quit having my son suffer more than he needs to.

But I can’t. I can’t because my son wouldn’t be alive today without advanced medical care. I have a son with complex health needs that are not going to go away. And I fear that the ridiculousness that is our current state of medical care isn’t going away either. I don’t have the answers. I am just a mom with a complex child. But something needs to be done. Something needs to change.

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22 Responses

  1. Renee, As I read today’s blog, I was led to this prayer, which I will continue to pray for both you and me. God’s hand is at work in your life. When looking for words to share with you, I found what I needed to hear myself, at least as much as you do.

    God, give me grace to accept with serenity
    the things that cannot be changed,
    Courage to change the things
    which should be changed,
    and the Wisdom to distinguish
    the one from the other.
    Living one day at a time,
    Enjoying one moment at a time,
    Accepting hardship as a pathway to peace,
    Taking, as Jesus did,
    This sinful world as it is,
    Not as I would have it,
    Trusting that You will make all things right,
    If I surrender to Your will,
    So that I may be reasonably happy in this life,
    And supremely happy with You forever in the next.
    Amen.

    –Reinhold Niebuhr

  2. I understand the frustration completely! My oldest has had kidney problems her whole life. She’s also had a migraine for almost 5 years. Yes, you read that correctly. “A migraine”, not migraine’s, plural. She’s had the same migraine every minute of every day since October 2009 and nobody has any answers. She’s now 20 and pregnant and thankfully the OB recognizes the need for specialist in her care but I’m almost more worried now because that means more hands in the pot, so to speak. Being an advocate for your child is a full time job all in itself.

    • bakersdozenandapolloxiv

      I’ve heard that (about your daughter) before, and that is so ridiculous!

  3. I know exactly what you’re talking about. I’ve been there and done that with my own son.

  4. Unfortunately, medical professionals are taught, either outright or by observing their teachers, to never ever admit to a patient/patient’s family that they’ve made a mistake. Doing so means that if you were to subsequently sue over the mistake, they’d have already admitted to fault and it makes their legal defense that much harder. Even if the doctor knows they’ve made a mistake and would like to apologize, the hospital’s legal department would be all over them. No one wins.

    Also, from what I’ve heard from my friends who have gone through residency, I’d bet that that resident has already been chewed out privately for that mistake, assuming the attending physician caught wind of it. If not, the resident probably would like to know what subsequently happened with the g-tube in order to learn from it. The good ones really do just want to learn and do well.

    • bakersdozenandapolloxiv

      I would like to think he was chewed out, but the GI nurse said there was no mention in his records 🙁

      • I guess it depends. My husband is a ER Dr and he apologizes all the time. Of course at times it is for others mistakes, but sometimes something has gotten missed and the patient is back. Not necessarily negligence just him saying “sorry to see you are back and that didn’t get caught the first time”

        I was wondering about the resident knowing about the G tube. I mean it happened after you left. If he was a resident than GI is probably not his specialty. You usually for a full Internal Med residency and then what is called a “Fellowship in GI”…its a specialty so he needs to know regardless.

        I hear you. I have a GI Dr, but yes things like surgery/pain/anemia/.….are not “their problems”. We joke the GI Drs have a sweet deal..lol..they o a lot of scopes(read $$$) and small procedures and diagnose some diseases…then there is a lot of referring to more Drs( surgeons,internal med,pain clinic,hematologist) been there…..so sorry Renee

        • bakersdozenandapolloxiv

          Liz- Apollo’s attending doctor at Texas Children’s apologized to me. After a week of overfeeding him (and me arguing about it) and yet another incident of him vomiting and the nurse coming in to give him another feeding ten minutes later, I said they COULD NOT feed him again until I talked to his doctor. We went over his feedings again, and the doctor apologized telling me when I said we fed him “four times a day” she thought I meant “every four hours”. I don’t agree at all that doctors never apologize. It’s not like we could (or would) sue the resident for what happened. He caused my son unneeded pain and trauma, apologizing is just common courtesy.

          And the resident specifically introduced himself as “Dr. F’s resident”, so I think he was a GI resident.

  5. That boy could be a poster child for ANYTHING! Gorgeous kid. 🙂 So sorry Renee, so so sorry. The system. The doctors hate it and the patients hate it. There has to be something different that can be done. 🙁 🙁 🙁

  6. Kim Shafer

    sorry- if it helps we only saw GI once- Leo is followed every 6 months by the surgeon who placed his g tube. His surgeon created a gerd (reflux) clinic and he follows Leo for that also. The surgeon also has a nutritionist on his staff who does Leo’s feed calculations and monitors his weight. I also call them if Leo gets a stomach bug and bypass our pediatrician and they tell me how to adjust Leo’s feeds. I believe a surgeon is the one who should be able to help with the g tube issues. Praying you get better care with the surgeon.

    • bakersdozenandapolloxiv

      That *does* help! You would think someone would have mentioned that a general surgeon would deal with that. We’ve always been directed to the GI department.

  7. this whole mess just stinks!!! i am so sorry to hear once again dr’s won’t listen to you! poor Apollo! Praying for God to provide you with an awesome Dr.

  8. I am so sorry for your suffering and Apollo’s. I am wondering if you have ever come across Regina Holliday and her Walking Gallery? You or Apollo would look great in a jacket. http://reginaholliday.blogspot.com/

    • bakersdozenandapolloxiv

      This is so cool! I need to do a bit more research and very likely be contacting them.

  9. I stalked a GI specialist once. Seriously, he would not see me to clarify something he wrote in Kaylee’s notes, his resident was not able to clarify it, none of our cardiac team could explain it clearly to me. I sat outside his rooms, I went around the hospital and sat where I knew he might be – eventually he called me and told me directly he would not see me. I went down to ER and cried until someone made him come and talk to me. He clarified what he wrote but then proceeded to tell me Kaylee was not a GI patient but a cardio patient – he was just advising at the request of cardio. But she was cardio stable an we’d been discharged from cardio with regular annual followup scheduled but no plan for her NJ tube. It was a mess. On top of this, the average er doc doesn’t even know what an NJ tube is and it needs to be replaced/adjusted under x-ray and her g-tube wasn’t even scheduled yet…I could go on. Thankfully the Australian system is reasonably streamlined (and free) but it is still a full time job keeping our team of dozens of specialists informed and coordinated and don’t even talk about pharmacy. I often say I left the field of education thinking I’d never do that much paperwork again….then I had Kaylee. I love my little girl to bits, but I am right there with you with the “over it” I never wanted to be a health professional, but I find myself teaching doctors and nurses how to care for my girl because it requires specialist knowledge the average doc/nurse does not have and most just look confused at the name of her syndrome because they never heard of it. Trying to control the leviathan that is Kaylee’s care can be all consuming at times and it is hard not to resent the stupidity of others – especially when it causes my kids pain.

    *sigh*

    Sorry, I was supposed to be commiserating and saying you’re not alone in your feelings but. somewhere along the way it turned into a rant/vent.

    In Kaylee’s case I would email her general surgeon who placed her tube and performed her stomach surgery (she has 4 surgeons on staff – cardio, cranio-facial, ocular-plastics and general – lucky girl) and ask him to consult. But I am in Australia. By the way, I got the direct email address of her general surgeon by cracking the code of the hospital email system and figuring it out. Thankfully he intially thought he must have given it to me and forgot. When he got to know me a bit better, I told him what I did and he overlooked my cheekyness and is good to deal with directly. Sometimes it takes being a stalker/hacker/one of THOSE Mums to get stuff done, and it is downright exhausting – largely because it just should not be this hard. Praying for strength for you and me.

  10. From the point of view of a medical student I agree the resident was probably thoroughly chewed out over this. Such as ed doctor is furious about having to cause such pain to Apollo, calls the attending for gi who in turn will chastise the resident, or give resident further education as to how to never do that in the future. I will say I was allowed to change the gtube on a child having gtube issues. This was while the gtube nurse was telling me exactly how to do it, and the child wasn’t bleeding, or in any distress. I haven’t done it for several years, but I thought you gently pulled or tugged on it to make sure it was not going to come out? I’m sure you’d know more about that than me though since you change it so frequently.

    I have only ever been involved with gtubes on a surgical service, there is a nurse who is considered the expert in our hospital about them who is on the surgical team.

    The gi doctors seem to be more involved in the disease processes, and doing scopes. However, this is very hospital dependent and also depends on how well they were trained in that particular procedure.

    If you let the nurses know you’d prefer to only let very experienced people touch Apollos gtube, they are usually very good at running interference and making sure that’s who is the one touching it. For example a parent only wanted someone who had done x procedure before to do it on her child… Nurse tells us and that’s what happens. However, the mom would usually not feel as comfortable telling the doctors compared with the nurse who usually spends much more time with the family.

    I think someone mentioned previously, but July is when new residents start. They also usually rotate through several different departments during the year. Again, not sure if that’s how the hospital you are at works.

  11. Hang in there. Of course I know you will but just wanted to say that you are not alone. Many of us are battling for our children’s medical issues and it is exhausting. I am cheerleading for you!

  12. Oh Renee, I’m sick–just sick–hearing all of this! I have followed your blog for a while and know Apollo’s story, and this new turn of events is just so frustrating and indicative of our broken medical system. I could share many, many of my own stories because I myself have a complex medical issue. There is an amazing naturopathic doctor in Kirkland who has helped me tremendously. I know she can’t handle Apollo’s G-tube, but perhaps she can provide some supplemental care to help him feel better? E-mail me if you want to know more about her. Please know that this suggestion comes from my desire to see healing for Apollo. I know that so many suggestions become irritating and not helpful–I’ve been there!

  13. So frustrating that you have to fight the system that is supposed to help your baby. I wonder of you can have in his records that he will not be seen by residents? Or make it clear when making appointments and/or entering the er.

    • bakersdozenandapolloxiv

      We have every right to simply say residents can see him. We won’t let another resident touch his g-tube, I can tell you that.

  14. I agree! And you should connect with Rebecca at http://shovedtothem.blogspot.com/ She is going through a similarly frustrating medical experience with her daughter right now.

    • bakersdozenandapolloxiv

      Thank you. I just spent a good amount of time reading about her daughter. I don’t believe there is anything more frustrating than doctors not being able find anything wrong with your child when you know something is wrong. Then you begin to feel that they are viewing you as a mother who has a pathological need for her child to be sick…when nothing could be further from the truth 🙁

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