9 Signs Your Child May Have Complex Medical Needs

posted in: Apollo | 30

Sometimes we all need a bit of humor in our lives, don’t you agree? So this morning I present to you: Nine Signs that Your Child May Have Complex Medical Needs:g-tube, tube fed, bright beginnings, double aortic arch

1. This is what your morning coffee looks like.

IMG_6711

2. You let your child pick TWO candy bars from the vending machine at the hospital since you know there is no chance he’ll eat them. And it would be cause for celebration if he did.

storyboard0041

3. Feeding your toddler a snack requires: a mechanical pump, tubing and syringes.

Or:

051912_2815-blog

4. You can feed your child a full meal while he’s asleep.g-tube, double aortic arch, vascular ring, seattle children's hospital, large family, large family blog5. Your child has been known to randomly vomit for no reason.

Or:

6. You can hand your three-year old a bucket while traveling down the freeway at 70 mph and he has perfect aim.  Every time.

012213_9373 blog

7. Your toddler randomly talks about his blood pressure and pulse ox levels. And can pronounce words like: esophagus, trachea and aorta.

storyboard0082

8. Your child’s milestones include when they graduated from a hospital crib to a hospital bed.

storyboard0053

9. You get a huge UPS delivery every few weeks! But it’s all of feeding supplies.

Okay, your turn. Any of you out there have some to add to the list? I could use a laugh too.

 

Facebook Comments

30 Responses

  1. He’s an heroic kid and you are absolutely the heroine of moms!

  2. One from today:
    When you go to the doctors office and every single person greets your daughter by name….. Minor celebrity!
    🙂

    • bakersdozenandapolloxiv

      Oh yes! Or you call at 9 am for an appointment and the receptionist says, “We have a one o’clock appointment open…or did you need one sooner?”

  3. When you have the phone numbers to at least a half dozen different units at the Children’s Hospital (neurology, child development, gastroenterology, orthopedics, etc.) memorized.

    What your child needs labs done, he can tell the phlebotomist . which finger bleeds best (for finger pokes) and where to find the vein closest to the surface (and which ones rolls away, and which are too scarred to use) when he needs blood drawn from a vein.

    What you child can easily rattle off the long (generic) names of the medications he’s on… even when they are long and hard to pronounce.

    I can’t think of any more right now…

    Love your list… it’s amazing what passes for normal at our houses, isn’t it?

    • bakersdozenandapolloxiv

      Maura- I actually meant to add (but forgot) you recognize your child’s hospital on caller id…

  4. When you have a mental points-based ranking system for doctors based on how they deal with situations, how often they hand you off to a nurse to avoid giving answers, bedside manner, honesty, willingness to refer if they don’t know something, how often they suggest unnecessary tests/procedures or refuse necessary ones, et cetera.

    I’m jaded, aren’t I? 🙁

    • bakersdozenandapolloxiv

      Sara- can you even deal with that many doctors and *not* be jaded? I often wish I was one of those moms who could gush endlessly about her experiences w/ doctors, hospital, nurses, etc. But I’m not. So I try to keep my sense of humor each day. Sigh.

      • I had one amazing nurse in neurology. She brought me a coffee after I was in the ER all night and brought my baby a prize and when I told her she was an angel from heaven, she told me “no, im a mother too” :D. it was so touching to me

        • bakersdozenandapolloxiv

          Thank you for sharing this! We still remember each and every doctor and nurse who went the extra mile for us or Apollo.

      • That’s all you can do.

        In fairness, some doctors do rank very highly in that system 😉 They’re not all incompetent jerks!

        I’ve had several medical adventures with various kids before my token Sick Kid — holy quests, I call them, because that’s what they feel like — and each and every time there’s a handful of obstructive, incompetent or just plain careless doctors we have to go through to get to the goldmine doctor at the end who puts it all together or just gives a darn enough to follow through. It’s worth it but man I’d love to just go directly to the good part without wading through the swamp of bureaucracy and stupidity.

  5. *You know the closest hospital along your entire vacation route…..as long as it isn’t cancelled by a medical crisis…..again
    *Spending their birthday NOT in the hospital is a rarity
    *by 6 years of age your son can fix & reprogram the IV pump when there’s air in the line faster than the nurse can get there…and remove his own IV when no longer required
    *when your child knows his own body so well, he diagnoses the problem before the doctors even run the test…..and he’s right
    *masks, hand sanitizer and caviwipes are purchased by the case
    *your child can give adults correct directions to every hospital department
    *when you watch an episode of “House” and the “rare” conditions/test don’t seem so rare to you

  6. When the girl at the coffee shop in the lobby of the hospital knows your name and what your “regular” is.

  7. When the only information you have to give the paramedics when the ambulance arrives is the latest medication doses since that changes every week and they know everything else.
    When you have a complete set of toiletries plus spare underwear for yourself in the diaper bag in case of emergency transport.
    When it takes at least 3 bags to leave the house for the day.
    When you have a panic attack in a public restroom trying to decide if it is better to not wash your son’s hands or to use unapproved soap.
    When you consider syringes to be standard kitchen equipment, and you are familiar with every type of tip they come with.
    When people leave the restaurant muttering about parents bringing their sick kids out in public after your son throws up all over the table and no one believes you when you tell them he isn’t sick, he just throws up because he has trouble swallowing.

    I still remember the time Owen threw up all over your floor when you still had carpeting. I worried so much about going anywhere for that reason. Unfortunately Owen never had very good aim.

    • bakersdozenandapolloxiv

      Just for the record Kara, I don’t even remember Owen vomiting on our carpet. I think that says something more about *my* life than *yours*.

  8. When the woman at the blood draw place greets you by name, and tells you her schedule in advance so you know when to come back to get the “good” phlebotomist. When both your mom and your sister need google to figure out how to spell the name of her disorder.

  9. Oh and to second Kara, when you/your family member are on the medications that they use on House.

  10. Although I have had sick children who have required a little more than normal care, they have been nothing compared to other’s journeys. But I have worked as an RN and as a special education teacher. You know a child is high need when they have a nasal spray to help then control their fluid balances due to tumours. Then there are mum’s who can catheterise etc without thinking. I have been blessed to meet parents who are so skilled and capable because they have to be.

  11. Our son is a severe celiac with silent frank aspiration before the swallow issues:

    When your 5 month old is almost the size of your 20 month old.

    When giving your child a bath is nerve wracking.

    When leaving a glass of water out is literally life threatening to your toddler.

    When you actually choose to allow your child to undergo surgery with general anesthesia because the alternative of doing/knowing nothing is just not acceptable.

    • bakersdozenandapolloxiv

      Quinault- That is terrifying…I so remember the days when a peanut, apple, chicken nugget or carrot put Apollo’s life at risk…and this was when he was old enough your average person wouldn’t think anything of handing him one of those foods.

      • It is scary right now. But it may not be long-term. He might outgrow it. The hard part is that he craves unthickened fluids. So he will try to drink out of the toilet, and even puddles because the body wants water so badly. So it is scary right because he is unknowingly enda

    • Owen was completely NPO for over a year from birth due to frank aspiration. He’s now completely orally fed with a totally clear swallow study at age 4. It can get better!

  12. You kindly but frankly tell any intern, registrar or nurse that you have a 2 try rule with cannulation and if they don’t get it second try – they need to get someone else.

    You have a large folder of your own to take into each appointment/hospital trip which you use to keep track of/explain your child’s condition.

    You usually have at least half a dozen med students and a couple of interns come to ask about your child’s condition – and you give a tutorial with handouts and fliers every time.

    When you count your blessings you start with “clear and functional airways”

    Your child’s therapists start asking you for ideas on how to help other clients.

    You have had people ask you what your child’s life expectancy is. A lot.

    You have strong opinions on which medical tape is the best and how best to use it.

    Your older kids use 60ml syringes as water pistols.

    You know where the best vending machines and coffee is in three different hospitals in two different states.

    You kind of want to punch kindly old ladies who tell you that your child “might just grow out of” their complex syndrome.

    You have to allow an extra 20 minutes to get in and out of appointments in the hospital for the number of staff members you stop and chat to in the hallway.

    You’ve ever corrected how a nurse/radiologist/intern performs a procedure on your child.

    • bakersdozenandapolloxiv

      The syringes! I totally could have mentioned that. Or that your three year old prefers to drink out of them over a cup. Or that your 17 year old takes them to school with the condiments for her sandwich or dressing for her salad. *sigh* Kara has a great story about the dirty looks/comments her sons got when she sent them to rinse out syringes on a camping trip…

      • I didn’t even think about that. we took the kids on a 10 day tent camping trip to Yellowstone when Owen was still tube fed. Because we were in bear territory, we didn’t wash anything with food at the tent site. The campground had a kitchen area for everyone to use. I sent my 11 year old down to rinse out syringes after a feeding and almost got CPS called on us for having our child handling “drug paraphernalia”. I didn’t even think about what someone who wasn’t familiar with our medical issues would think about a pre-teen with a handful of syringes. It was just so commonplace to us by then.

      • I answered the door and signed for a delivery. Couldn’t work out why the delivery guy was all jumpy and backing away. Realised after I closed the door not everyone holds a 60 ml syringe that’s attached to the 2 year old on their hip as they sign for packages – gave me a much needed laugh!

  13. when you go to neurology and the nurses are so excited to see your son. or the EEG lady looks at you and asks “are you here for me?”

  14. Thankfully we seem to be out of this period, but, thankfully mostly in the past:

    When your baby graduates from an incubator to a “newborn” crib…and then to the regular sized crib on their third hospital stay!

    (This is like Quinault) When your friend’s six-week-old is bigger than your one-year-old.

    When you’re on a first-name basis with the cleaning crews on multiples floors of the hospital.

    When you don’t even blink when the young male resident walks in while you’re using the breast pump (and he doesn’t blink either, but only thinks to apologize after several minutes).

    When doctors you’ve never met (or just didn’t remember) go to bat to get your child into the already-full, not taking anyone else, child’s ward, rather than requiring you to go by ambulance to the nearest specialized hospital two hours away…all because they “know” your child, and want her to have care from familiar doctors.

    When the only time you’ve been out of the house in the last six weeks is to doctor’s appointments, other than the one time you got a special trip to go Christmas shopping for an hour! I am so glad to not be in quarantine (not because your child is contagious, but because of everyone else).

    When a routine question to anyone you talk to (or who had the bad luck to have coughed within twenty feet of you), is, “Are you sick, or have you knowingly been around anyone sick within the last two days?”

    • Our son Taz was 13 lbs at 1 year. Our newest baby was 13 lbs by 2 months. Due to being on 1500 cals of formula, and the thickener, he is 23 lbs now at 20 months- the 5 month old is 20 lbs. It is so weird to be putting clothing on the new baby that his “big” brother just outgrew three months ago.

      Taz will possibly outgrow his dysphagia, or at the very least he will be capable of understanding that he can’t have unthickened fluids in soups/drinks etc. So it is very scary right now with a potential to get better.

      Honestly the severe celiac is scarier right now. We had some horrific bleeding GI episodes from some cheerios he found and ate off the floor once.

      • Wow, that’s scary. I can’t imagine having to continually go through all of that.

        Our daughter was born three months early (after having fetal surgery for Twin-Twin Transfusion Syndrome). After being home for a month after two and a half months in the hospital, she went back in for ten days with a strep B infection in her blood, which might have been meningitis (but they never found out for sure). Then ended up in the hospital again a few months later for an episode of respiratory distress, for which they never found the cause. Today, she’s perfect in every way, but like your son was 13 lbs. at a year old. She’s back on a high calorie supplement to try to help her gain a little more weight as she drops off her own curve (way below even the preemie growth charts) without it.

  15. (Half of our family is celiac)
    ~If your 7-year-old can cross-examine a food label faster then her friends can tie their shoes (this was pre-new food labeling laws).
    ~If you (and every other member of your family) memorized the top “no-no” additives: dextrose and maltodextrine are always gluten free, maltodextrose and dextrine are (were) suspect (also pre-new food labeling laws).
    ~If you felt like throwing a party when the new food labeling laws passed.
    ~If you’ve ever almost reported a company for not following said laws.
    ~If you’ve ever spent hours on the phone trying to find out if the medication necessary to keep your child functional is safe for them to take, and ended up wanting to start a petition for the FDA to make medication allergen warnings.

Please share your thoughts!