Fevers

Tink has been febrile on and off for the last day or so.

Just a reminder, the book in her room aka binder or Control Journal has a fully developed fever protocol we can use. The binder is located on top of her orange organizer. It specifies at what temperature to give meds, how long to keep feeds off, and takes MOST but not all of the guesswork out of how to care for her while she's fighting a high temp.

Typically, when febrile, our little girl shunts her heat and her extremities become extremely cold. If this is happening, we need a thick blanket to keep the profusion in those parts of her body. The easiest way to heat her legs but not her core is to wrap a blanket around just her legs; this can also be done as needed to her arms, though that's less frequent.

However, any time we have a thick blanket on her, Tink can overheat. If we're leaving one to keep her extremities warm and profusing, we need to assess whether or not she is then overheating in those parts. If she is, the covering can be removed and exchanged for a lightweight receiving blanket or clothing. She should never be hanging out not covered by clothes or some other form of covering.

As a side note, when febrile and shunting her heat, the pulse ox reading is incredibly unreliable. It won't read high but it might read low. The need for an accurate reading makes us fight to keep those legs warm even more. Sometimes, we use our dryer to heat a blanket for her; other times, just the blanket is enough.

Glasses and Other Things in the Bed

I think all of our nurses have done this at one point or another; it's not a strong suit of mine either. Just a reminder, nothing should be going in the bed that doesn't absolutely have to be there. Things should especially not be left on the top of the bed where they can and do fall off and under the bed where they are difficult to pick back up, especially for me with the recent back issues.

It's important that we don't keep extra things in the bed where Tink will end up laying on them. This includes toys that aren't actively being played with, blankets that aren't in use, socks, medical equipment, and anything else.

As for the glasses, they should either be on her face or in the glasses case where they can be protected, and if at all possible, at end of shift, they should really be on her face. We aren't able to keep watch as closely as an on shift nurse and don't always catch when she wakes up to make sure she's getting maximum use out of them.

New Posts Incoming

Our December schedule announces the training of a new nurse. We're both really excited for that and a little overwhelmed -- training someone on all these cares and conditions can be hard! In preparation for that, we've come up with a list of posts to write and link to each other that should help in training a new nurse and also as review for our more veteran nurses, especially those who aren't able to work with us as often.

In short, expect an explosion of posts!

Night shift nurses should take the time during the middle of the night "lull" that can occur to read through these. Day shift nurses, please scan through to make sure you aren't missing any major updates or wound alerts (I'll tag them as such) and read through them at your convenience unless you're here on respite and also have some downtime.

And to our new nurse, welcome! Hopefully having something to reference will make learning to care for our girl solo a little less daunting.

Syringes for School & Home

We get fifteen 60 cc syringes a month. We tend to hoard them to keep extras around in case we need them.

That said, we do use several 60 cc syringes throughout the week. Please make sure you are looking for the in use syringes before opening a new syringe. The syringes being used should be switched out every Friday by the Friday night nurse.

1. Very top pocket of the Go Bag. This is used to bolus feed clears both at school any time Tink is eating away from home. It should be rinsed out after each use and put back into that top pocket. (This is also where Tink's feeding extension should be any time it is not attached to her.)

2. Inside the meds and feeds pocket of the Go Bag organizer. This one should NOT be used except in situations where feeding needs could not have been planned for. It isn't meant to be rotated out and is the only emergency syringe in the bag, so please don't use it if you have access to the open syringe (which you always should).

3. Home syringe that can likely be found in the drying rack. This should get washed by the nurse each day and left to dry again.

Side note: All bolus feeds done using a 60 cc syringe should be done via gravity, not by pushing with the plunger. This includes her nightly prune juice. We don't always keep a plunger with most commonly used bolus syringes because we were trained not to push via 60 cc syringes if gravity could accomplish the same goal. Please do not open a new syringe for lack of a plunger.

Likewise, we haven't trained our nurses to check residual and have been specifically asked by the hospital team NOT to check residuals if we aren't actively expecting a vomiting and aspiration issue. Nurses should not be doing this without justification.

Charting Update: Tracking School Hours

We've had some inconsistencies with how school hours are charted due to how late our bus is. After talking to both the office and our Medicaid waiver coordinator, we've reached some resolution.

Effective this week, no respite is to be claimed after 15 minutes prior to the SCHEDULED bus time or within 15 minutes of the bus arriving home. If the bus is late, the district is authorizing up to an additional 15 minutes prior to school on the SCHOOL note. If the bus is more than 15 minutes late (which should be exceedingly rare), we will need the nurse on shift to contact the office so that they can contact the school district to have the district authorize the overage.

We will still be funding 15 minutes before and after the school shift to give our school nurses more time to check equipment, transfer patient, get/give report, and return equipment at the end of the day. No more than 15 minutes respite should be claimed without verifying that time is to be claimed as respite. We have had troubles with our respite being used faster than we can account for; if more than the scheduled respite needs to be claimed, we as her family need to be authorizing it. Allowing for a minimal amount of respite to make things more realistic to accomplish is not a blanket authorization for additional time.

As we transition to keeping the more stringent time, please feel free to remind caregivers that nurses need to focus to finish on time without claiming respite. The goal isn't to cheat nurses of time worked but to make sure that all of our respite is being used to aid our family. We're hopeful both nurses and family can be more mindful of the end of shift.

Feeding: Add Prune Juice and Multivitamin

During our inpatient stay, the dietician recommended adding 60 cc prune juice to feeds daily and a multivitamin.

The multivitamin is in the pill case with the other daily meds. This should be crushed and diluted with her feeds and put into the bag to run over the course of her feeding. Vitamins vary from meds in that we aren't so much concerned with peaks and troughs as we are with getting it, and that if we get 85% instead of 95%, we aren't as worried about the loss.

Currently, the prune juice is running overnight. We may start bolusing it after CPT to help increase effectiveness, so be sure to ask Mom if that change has been made.

Equipment: Suction

Just a reminder that the suction machine that goes to school with Tink should be on the wheelchair at end of shift.

Ideally, it would only ever be taken off her wheelchair to clean it. In practice, moving her chair to the other side of her room due to Christmas decorations means until we resolve the charger situation, the suction can't charge on the chair.

We had another episode today when we got out of the house to have a coughing fit and find we didn't have a suction. We're also liable in this but juggling everything on poor sleep, stuff gets forgotten.

Hopefully, we'll have an improved charging situation soon.