The tapestry of the life of a medically complex family

Archive for the ‘Emergency’ Category

10 Reasons Complex Medical Needs Parents DON’T Drink Wine- But SHOULD

10. If you drink too much you could get a headache & not be able to do the next 11 neb medication series…

9. Frankly, if you TRY to drink “too much” you will only pass out as you take a sip of your second glass- exhaustion will force you into a deep slumber & you will SURELY miss dinner.

8. Your “normal” child is prone to sudden onset severe asthma & she will begin to wheeze when you begin to pour…

7. The corkscrew has been repurposed to open medication ampules and it’s too much bother to clean.

6. The oximeters have “relax-dar” – if you so much as move the milk over to consider taking out the Riesling, they will inevitably alarm repeatedly until repositioned on both twins.

5. The next neb treatment is actually due now…

4. It’s time to blend, heat, set-up & begin the overnight feed so who has time to search for a back-up corkscrew?!?

3. Have you ever been to a home with multiples and had all of the kids well at the same time??

2. BEEP!! BEEP!! ‘No food out’- what the hell??? Didn’t I just flush the GTube 5 seconds ago???

And the number 1 reason parents of complex medical needs’ kids don’t drink wine:

1. He’s making that cough again. THAT cough. That cough that indicates tonight or tomorrow will be the date of the next ER visit.

November & Being Thankful 2011

Today I am thankful that my electricity is restored and my children are back safe at home. We were heading into the ER when a family member got their electricity back & called us so that we packed more & headed to them. Before unpacking our car, the electricity was restored at our home so we visited for an hour and came back home.

I am thankful to Thomas Alva Edison for designing the lightbulb for home use and the many other electrical wonders that allow my children to live safely at home. Were it not for his work in electric batteries, our oximeters and suction machine would never function when the electricity goes out. His work in the development of use of electrical power within a home surely laid the groundwork for home medical equipment development.

On another day, being thankful for electricity might not enter my mind, but I know all too well the dangers without access to it for my children. Even with as “mild” as their complex medical needs are, without access to electricity to charge their life-saving and monitoring devices, a day without power can necessitate an emergency room trip. I am thankful we were able to avoid that this time around.

Quandary- Emergency Medicine

After nearly 18 months without an in-patient stay with my preemies, we have spent 4 of a recent 11 days in the hospital. Two days are accounted for by scheduled bronchoscopies and concern about maintaining Tavish post-op if we DID go home- given his 2-4L oxygen requirement on any given regular day… These two days were primarily uneventful, simple monitoring, realizing 1-3L was the necessary base to keep him adequately saturated post-op. A harmless stay in a familiar hospital without any change in home care plan on departure.

The OTHER 2 days were, well, less pleasant. Late on a Saturday morning it became clear that Tav’s developing virus was pairing with nausea/vomiting and not allowing me to re-hydrate him. By noon the car was packed to travel to an ER equipped with personnel who might find a vein in my ex-27-week preemie and be able to hydrate him via IV fluids. Although he required oxygen on sleeping, he was not requiring any supplemental oxygen while awake so other signs of respiratory distress were well within our “normal daily comfort limits”.

On arrival, the young resident did as requested and referred to the IV team to secure access, ordered a battery of blood tests & a chest film- pretty standard procedure with one of my trachees’ arrivals in an ER. The IV team got good access, labs were drawn & an IV was started to begin re-hydrating. While we were in the ER, Tav perked up a bit in response to fluids and began to register a low-grade fever [dammit]. His fever peaked at 101.48 and caused more nerves from the resident, when viewed next to his elevated white blood cell count & “cloudy” chest film. UNfortunately, this led the ER resident to conclude that an admission was warranted & that his sisters needed to find elsewhere to be on the holiday weekend, regardless if that meant leaving a trached child, unable to communicate, alone in a hospital room. KNOWING my child, and the RIGHT thing to do for him, I requested AMA paperwork.

Apparently that paperwork doesn’t exist within this particular hospital… what materialized was an attending ER doctor who tried to convince me otherwise, and a referral to social work. UGH! Listening was clearly NOT a strength in this department. I understand that they disagreed with me- hence the phrase “Against Medical Advice”- but am I not allowed to make this decision as a parent to a child with complex-medical needs? I worked hard to communicate that I was making this decision based on prior experience weathering this type of illness at home, with the helpful support of the fluids they already provided via IV. I assured them I would follow up and administer any antibiotics and work overnight to continue supporting hydration needs and that it was not ALL about not having options for the siblings. I tried to let them know this was something handled frequently at home over the last 18 mos.- which is why they hadn’t seen us in so long.

To no avail. The attending insisted we bed down in the ER overnight on 2 stretchers placed next to each other- the sisters sharing one & the patient & I the other. At 2:15AM when he peed through a diaper, then asked 5 minutes later to use the rest room, they discontinued the IV fluids. No other medical intervention was being provided at that time, and only minimal check-in given that this was in a very busy city medical center. When the overnight resident arrived, I worked to convince HIM of my competence at managing my child at home… same non-result. We were kept in the ER until the morning when some fellows from pulmonary/ENT came by, listened to Tav’s lungs, and let us leave the building. We left with 4 days oral antibiotics & oral steroids.

And apparently a letter to my pediatrician that I was uncooperative in the ER… WHAT?? Did I remove the IV and leave as I had wished? No. Did I raise my voice, use profanity, discount their medical training? No. Did I REFUSE the IV fluids, one dose of IV antibiotics, one dose of IV steroids and one dose of IV zofran [for nausea]? No. Did I LEAVE when they stopped providing medical intervention to my son in the middle of the night? No. What I did was advocate for my child. What I did was refuse to leave my child alone in a situation beyond his ability to self-advocate and communicate. What I did was refuse to subject my child to excessive medical intervention due to the meltdown he would have had upon my departure from his immediate surroundings- which most assuredly would have compromised his breathing efficiency and ability to manage his own secretions. What I did was to provide appropriate care to my medically complex & familiar child. Yet, somehow, what I did was appear uncooperative to people who I rely on for supporting me in the care of my medically complex child.

I tried to get a copy of the “letter” sent to my pediatrician- and was told it did not exist. There is apparently no record of any social work referral either… How is it that I can address communication in this most necessary of relationships? The alternative is not using this highly qualified resource for my children in the future- it seems a foolish option given my children’s ongoing complex medical needs. How can I become a “known” entity to this group of medical professionals so that when the need arises for a return visit, we can agree on discharge or admission, based on the needs of my child & the abilities of his/her at-home carers?


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