View of a wildfire west of LA from home in the Marina
View of a wildfire in Malibu from Santa Monica Beach
In the midst of an unprecedented evacuation in southern California, the effects of the wildfires are hitting home and our hearts sincerely go out to those affected by the natural disaster, those who have lost their homes and livelihoods, those who have been evacuated, those whose health suffers at times like this.
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Been a crazy week, nurses not turning up, urgent life saving medical supplies not turning up upon arrval at home, nurses falling asleep again despite me stating in no uncertain terms that I wouldn't tolerate sleeping on the job on their daily agendas, nurses sent on their way with the result I stayed up til 6am watching Reu until Jason took over, a frightening late night event of calling Jason to help me with the ambubag which we use to give Reu air after a desaturation episode post suctioning a persistent mucus plug and wildlifes keeping us away from the tourist spots (my brother Joe's here and the Griffith Observatory wasn't such a good idea given the terrible air quality). The trach and poor air quality do not a good match make. I imagine the pulmonologists at Children's will be pretty busy in the next few days whilst these fires burn.
Santa Ana winds have brought temperatures up to 95F in Marina del Rey and the dry air has whipped up raging bush fires in Malibu, the canyons and into San Diego. We watched the fires grow yesterday from a hot and sultry viewpoint at the Getty where we took Joe. We've had only 1 rainstorm in Reuben's lifetime and the ground is tinder dry from the record summer heatwave. We were thinking Summer's Almost Gone, spent at Children's, so at first the hot weather seemed like a blessing, a respite of summer heat just on the eve of winter and now, the wildfires...
Today we popped into Children's for a follow up on his new Mickey feeding tube and tomorrow, Tuesday, is the big day... a repeat BAER hearing test.
Santa Ana winds have brought temperatures up to 95F in Marina del Rey and the dry air has whipped up raging bush fires in Malibu, the canyons and into San Diego. We watched the fires grow yesterday from a hot and sultry viewpoint at the Getty where we took Joe. We've had only 1 rainstorm in Reuben's lifetime and the ground is tinder dry from the record summer heatwave. We were thinking Summer's Almost Gone, spent at Children's, so at first the hot weather seemed like a blessing, a respite of summer heat just on the eve of winter and now, the wildfires...
Today we popped into Children's for a follow up on his new Mickey feeding tube and tomorrow, Tuesday, is the big day... a repeat BAER hearing test.
7 comments:
I am so sorry your days home have not been without challenge. I applaud you both for managing marvellously and responding the best way possible in situations unimaginable. A native southern Californian, I have a litany of weather adages - and for fall/winter: there are always Santa Ana winds at the end of October, then again as the Chirstmas trees wait to be sold around Thanksgiving. Our two big fires over the past five years have both been at the end of October - in 2003 and 2005. I pray Reuben fares well through this heat and dryness - such challenges for a trach. May you both find the rest you need at the times you are allowed sleep. Snuggle the precious lad for us - you are always in our thoughts- oxo,y
... p.s. best of everything on the BAER tomorrow!!! :o)
wow the nurse prob ive read of that stuff in the charge list i do understnad that nite shift can b quite tiring but they should b having a sleep in the day thats wat my nurses at hosp did the 10 to seven am shifts were long and i know i would wake up and id say what will u do today theyd say go to sleep and that should b policy is iin aus i think less i just had such great nurses that did it anyway in the day lol love u
Hopefully tomorrows BAER will give you at last, a decisive answer to Reuben auditory situation. Be thinking of you all. Nurse issue must be very difficult to tolerate.
Love Erica
I am so sorry you are having such a hard time settling in at home with the bad nurses and all the med supplies not coming when they should. That is just horrible!! I know I would be on the phone yelling at someone. How do nurses not know they can not sleep when they are there to help you get some well needed sleep!! OMG!!
I hope things get better soon and everything falls into place.
Hugs,
Crystal and Eva
lots of luck with the hearing test. and patience is a virtue with everthing else. IF we can do anything let us in on it, untill we hear the next update our fingers are crossed and our hearts and minds are praying without ceasing in the hopes that you all will smile again soon. mk
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