Last night's nurse, ironically one of our better ones who worked with us on the initial homecoming, had to be raised from her slumber at home at 1130pm, so it was another late night waiting for her to arrive. I looked into the suggestion here of hiring a new agency, but really, the nurses may end up being the same ones going from shift to shift and actually that new agency has just called to say they have no available nurses anyway.
Driving to Children's this morning on the highway, we only just missed by inches a side collision hurtling towards us. Things like that happen in slow motion giving you time to desperately pray they won't hit you. Jason had a stand off with the driver, the 2 of them puffing out their chests like peacocks and the guy being incredibly viscious despite it being his error. I reported him to highway patrol for reckless driving anyway as he sped off, if that does any good at all. The fragility of it all, everything you've fought for for so long.
At ENT, the trach stoma's looking good as is his lower airway. Great we thought, but then there was no discussion of decannulation (taking out the trach), quite the opposite. We have an appointment with ENT in 6 months !!!!!! to be followed by a scope to see if the swelling from the ventilator tube's gone down, in a year. That means a year of no action on the trach. A year more of suctioning with the industrial machine. How can they tell if his upper airway is healing if they're not going to look? Apparently it's based on the Drs years of experience with upper airway obstructions, Reuben having laryngeal malatia, flopping tissue. I'm going to chat to Dr Charlie our paediatrician to see if he can shed any light on this unless any of you trach experts out there can help!
On the way home, a confirmation that the BAHA hearing aid is $4,300, a rejection of aid from our medical insurance for coverage and a denial of CCS (California Children's Services) aid despite medical necessity.
I really don't think this level of stress at every level is sustainable. It's crippling. When I look at the CHARGE Listserv and see the issues that noble, brave families are facing once they've got beyond the critical that we've been in for 6 months, gross motor, communication, behavioural, I know too that I'm going to need some other coping mechanism to get through this. It's not for a few weeks, days or months, it's for years.
10 comments:
Oh Catherine- You have a compelling voice, and while I read your words I feel my heart go down the path with you.... I think there is alot to be said for the saying "ignorance is bliss" - so much we didn't know I think made it much easier for us to move forward one step at a time, one moment at a time, one breath at a time. Today has troubles enough of its own. Do only what you can today. Do only what you need to this moment. Above all protect your spirit and your inner light - for all depends on that. Give thanks for all - the joys and the troubles - as you so beautifully have. All those adages "this too shall pass", why we look back at suctioning with an air of nostalgia - Keith was littler then.... so much love to you - if I could send you rest and solutions I would - all I can send is our love and optimism - you are far better off than we were at the place you are now - I cannot help but believe that you will continue to be better in comparison every step of the way....not beacuse you need to do anymore than you have - because you are who you are. oxo,y
Oh my friend...I am right there with you holding your hand. I truly feel your pain and have had many of those days of "how in the world can I do this?" But I promise it does get easier and you do find ways.
Have you talked with the hospital and the local DD? PLEAD YOUR CASE! Please call me if you want to walk through some ideas...seriously. I want to help in any way possible.
Amy
Hugs Catherine!! I know the feeling, our insurance will not pay for much of anything when it comes to equipment Eva needs, like her hearing aid and glasses, or even her walker. But we got lucky because the state paid for her hearing aid and glasses BUT only because she is labeled deaf/blind if she only had one we wouldn't have gotten any help.
I know its so hard in the beginning and you think about the future and wonder "HOW?" but we do it and before you know they are doing so much more then we ever thought they would and getting into EVERYTHING...LOL (now you know where I am right now LOL) Hang in there and the list is there for you whenever you need anything, I know it seems like we need more then a computer and some people on the internet we want someone there but if it was not for the list I would never have gotten through so much.
Hugs,
Crystal and Eva
Catherine,
I am so sorry that you are having a crummy time with the nurses. It really does get easier as time goes on--or else we are just able to adapt and so it seems easier--either way it won't be the same struggle you are feeling now.
Does Reuben have MediCal as secondary insurance? They should pay for his hearing aid (our primary insurance didn't, but Medicaid did). You can also ask if they have a loaner aid Reuben can use in the mean time. And if you are doing all his hearing follow up through the Children's Hospital, ask if they have a financial assistance program. Our Chilren's Hospital does--they basically write off whatever the insurance doesn't pay for and the income levels are pretty generous.
You will get through this rough place. Give that Reuben a big hug and kiss from us.
Hugs,
Sarah, Jeremy, and Evan.
wow at least the nurse was alsleep in her ownhouse LOL
Tough times indeed... sorry to hear that you are facing so many new worries and setbacks at the moment. Must be so frustrating to be let down so badly by the services and authorities that you would hope to be able to rely on. As others have said, I'm sure you will find what's required to get through this, even if it seems an impossible ask. Try to stay strong, focus on each day, hold on to the love and support you have from your family and friends, enjoy special moments with Reuben as much as you can. Big hugs to you all and I really hope that you get some better luck and more to feel positive about very, very soon. Polly xx
Sorry to hear about all of the inadequacies of the nursing staff. As my Mother always used to say"It is darkest before the dawn." Somehow God will provide and you all will get through this. "If God takes you to it, he will get you through it." I know that these are just sayings, but hang in there and remember there are people out here pulling for Reuben. I include have included him in my prayers ever since the day he was born. Let me know if there is anything that I can do for you from here. God Bless you all.
Lori
Catherine and Jason, I feel for you both, your life seems like a steeple chase, each fence followed by another obstacle on a race that never ends. But you have always been resilient, you have always strived for what you need, what you desire and what others might feel are outside their grasp. Reuben reflects this. He too straddles the fences, fights his ailments yet knows no winning line.
When I finally sorted Mum & Dads Skype your room, however cluttered, shone, the parents shone and little Reuben shone. His gestures sometimes seemed to becon for a hand to reach through the screen to touch his own, sometimes seemed to reach out to share a cuddle. You were all in great spirits and it was a joy to watch. I don't think I stopped smiling. It was hilarious watching Mum raise her voice over Skype. "She can't hear you" Dad repeatedly said, "the microphone's not working" but Mum continued "CAN YOU HEAR ME CATHERINE". A comedy sketch for sure!
Within this blog there are many words of support, far more information and terminology than I can understand and little rays of joy. It is with these comrades, these companions, these shared experiences and these moments that brings smiles to our faces that help us to hurdle more obstacles. We must accept they are there to be hurdled, we have to make good of the easier times and we can continue together during the harder times.
I'm a great believer in the thought it will turn out right. A long while ago I listened on the radio to someone who believed in Zen. He accepted the bad times as part of the process of appreciating the good times, it was as simple as that and he was happy in its simplicity. The good times gave him so much happiness and energy he was able to leap over the hurdles. We all see this in you and no doubt Reuben sees this too.
Keep jumping Catherine, Jason and Reuben, we're all cheering you on.
For the BAHA, contact the Let Them Hear Foundation, http://advocacy.letthemhear.org
They advocate for people particularly children who have been denied BAHA and cochlear implants by insurance companies.
Hope they can help.
Oh I am so sorry... Catherine, I hadn't read this post until just now... so I was completely clueless when I left the rambling, repetitive voicemail this morning.
I am so sorry for the "place" you are in right now. It can be so overwhelming... but, one moment at a time will get you through. It's a marathon, not a sprint. I also worried about all of the things that were to come (I still do, but control the urges better!) long before it was realistic to do so. Please try not to get too caught up in what the journey will look like in a year and try to focus on today... or you will surely make yourself sick with stress and worry, not to mention the world's longest "to-do" list.
I have so many things I want to share with you... so many ideas. Being fresh from some of the "battles" you are facing and still right in the thick of others... I feel like maybe I can offer some help or suggestions... or if nothing else, a knowing shoulder.
The Let Them Hear Foundation is run by the doctor that Gracie is now seeing... we talked a bit about this when we visited. I HIGHLY recommend a call to them to begin exploring options. Websites: letthemhear.org and CaliforniaEarInstitute.com or Calear.com
Has your Regional Center offered any aid or suggestions? Ours covered the portion of hearing aids (analog and later bone conduction) for Gracie that our insurances didn't cover... and they provided nearly ALL of her therapy equipment prior to the age of three (with a little nudging from this "Mama Bear"). There are MANY ways to advocate and appeal.
What was the reason for the CCS denial...?
Regarding the trach - - we were told that "temporary" with Gracie (trached for the exact same reason as Reuben, but at 17 months) was yet to be defined. At minimum, the told us 6 months, but to expect that it could be quite some time. With the amount of damage to her airway, it took about 6 months to heal... but then the irritation from reflux caused other issues. She remains trached for secretion management challenges, not airway issues. Additionally, she has other surgeries coming up and there is no way that any of us want it taken out until we know that all of the "big" ones are out of the way. No one wants to take a chance that a re-intubation will do damage. So... to throw a "positive" twist... if you are looking into surgical intervention for Reuben's hearing, then you want that easy airway access for now. We've also been told by all of Gracie's team that you don't want to decannulate a medically fragile child (especially a baby) during the cold and flu season. That fragile airway would be attacked if the child got sick...
Suction... John and I joke all the time that if we had money to burn, one thing we'd do is put in wall suction like they have at the hospital. We've checked out the newer, more expensive suction machines (because of the noise factor) but just can't justify the expense... mostly because if we buy them, insurance won't pay for service and that ends up costing more than the machine. Believe it or not, you actually get used to the sound. Preston rarely even notices it! (I JUST suctioned Gracie a minute ago and John is asleep on the couch and heard NOTHING! Eventually, you learn to tune it out...!)
Nursing... I really don't recommend a switch... we tried it and it backfired. Ten months later, we switched back. And, we were "warned" by many on the listserve at the time... telling me that the grass isn't always greener. It wasn't. Same problems, same pool of nurses. Some people are very lucky... I think it depends on where in the country you live, too. In any case, it takes time to find them and more time to trust them. We haven't had steady nights in over a year and a half and haven't had any night nursing coverage since February... sort of by choice because we won't tolerate sleeping or less than stellar care. I'm sure that knowing you're not alone in this doesn't make it any easier... but since you're not alone, you do have people who understand. The "shortage" is not the only issue... the payrate is also a problem. The nurses get less than half the rate that the agencies charge/contract with insurance. Nurses in the hospitals often make twice what homecare nurses make... so often, not always, you get the "bottom of the barrel" (as John describes many of our nurse interviewees).
I will stop now... I went on for far too long. I just don't know when we might be able to chat... so I am going to use your blog to "talk" to you. :)
There are many people "out here" for you... supporting you, feeling your pain and struggles, sharing in your joys. I hope you can feel that and draw strength from it.
John and I each send our love... and we both hope that things start to get easier.
Kristi
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