With my trached twins & youngest with breathing, GI, ortho & neuro challenges, you can imagine my house is a pretty busy place. The twins are approved for a lot of nursing hours but on average I get 20hrs of coverage. There are school vacations, special training at their “day job” & a host of other reasons a nurse might miss multiple shifts a month.
Since July, I have only met with one nurse referred by the agency. He was “miraculously” unavailable for ANY shifts I wanted filled & only ones that were partial & inconvenient (come after & leave before meds…?) as soon as our 4hrs of training him had ended. I have not had a single night of nursing since late July. It is now late January.
For me, it wouldn’t seem so bad if it wasn’t for the fact that my kids have been sick for FOUR FULL MONTHS of that six months. They went on “sick plan” the first week of August & stayed on it through October- with 10 inpatient days in September for all 3. They took antibiotics & long steroid tapers & finally seemed “better” the first week of November.
After about 2.5 weeks of regular meds, “sick plan” was reinitiated. More steroids after an ER visit for one, antibiotics for 2. We stayed home for Thanksgiving, unable to pause nebulized meds longer than 4hrs apart.
Maybe things are not clear to everyone but “sick plan” is a MINIMUM of 2-3 nebulized medications, 3 times daily. The minimum is 8 nebulized medications per child, times 3 children. (When a nurse comes, s/he covers 6 for 2 of the kids, max). Most of this fall, the kids were on additional nebs- every 4-6 hours for bronchodilators, and 2hrs for normal saline nebulized in between for the twins during the day- and some nights but then we went inpatient. There are the regular oral meds too & additional doses of steroids and antibiotics.
And there’s cooking & cleaning & reading & laundry & bedtime & cuddles…
So when a nurse came last night- because our 28hr/week day nurse has been out sick half every recent week… Some friends thought I’d fall dead asleep & not wake up until he was ready to leave. No. Such. Luck.
After 6 months of 20-hr days, there is no “instant off”. I actually had a HARDER time sleeping than usual because I wasn’t in the same room as the compressors & alarms & cacophony that usually lulls me into my 3-4 hours/sleep a night. Last night I got less than 3.
Hoping for a nurse on Friday…