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SAY no evil, hear no evil…..
Wednesday, 18 March 2009
Its been one of those mornings….I know some of you are new to my life…so you may or may not be aware of the fact that Deion is going through some tests at the moment. He seems to be losing some muscle tone, developing squints and having trouble swallowing. So he is undergoing all sorts of investigations…Deion had an appointment today at our local hospital. He visits four different hospitals, but we were local today.
Now I often moan about how the system works with regards to appointments. This particular clinic schedules appointments three minutes
apart…I kid you not…ridiculous really, by the time Deion drives in the room in his electric wheelchair, takes out a couple of potted plants and a table leg…our time is up. So needless to say, the clinic always runs late and although our appointment was at nine minutes past nine, the clinic was already running about six hours late by then…(you do know I tend to exaggerate by now right?)Now, Deion has been going through this for a while, and all the consultants at all the hospitals have his detailed notes….so I am under the mistaken notion that they should vaguely know Deion, his history, our family history ever so slightly. Some of these consultants were even Aaron’s consultants too.
In the beginning, I expected to have to talk to these consultants a few times and ask them to be careful about what they say. Of course, while most eleven
year olds wouldn’t have a clue about muscular dystrophy, progressive neuromuscular and life curtailing illnesses… Deion does, because its all the same doctors, the same words, the same tests and same fears as when Aaron had to go through it.So I have asked them to be careful what they say in front of him. Deion is fine as long as he knows what’s going on, as long as he is told they are just ruling out, looking at and don’t bandy around these awful words in front of him, he can cope.
It breaks my heart to see his little face drop when they talk about mitochondrial cells not performing…and to be fair to the docs…what eleven year old should understand this???? Well!! Deion does unfortunately. And no matter what I say, or explain, they won’t stop saying these things in front of him.
I’m not sure what to do.
Last time Deion got really upset, so this time I stepped in the room before Deion, and pre warned the consultant about Deion’s understanding of the terminology. She looked at her watch twice, obviously the three minute appointment did not allow for a mum’s pre consultation, but undeterred I went on and took up those three precious minutes.So in comes Deion, he’s a little nervous I can tell, because he’s driving is a little erratically… he ran over my toe, crashed into a chair and killed a small side table. He parked in front of the doctor, I sat in the chair next to him and she asked him how he was...so far so good.
And also, at Deion’s insistence he was wearing his T-shirt that says “if you can’t say anything nice…don’t say anything at all.” We thought this would have gotten the message across….
Then she turned to me and said, “There’s definitely something neuromuscular going on, we need to see if it’s progressive and how aggressive it is, at this point a full muscle biopsy to get an accurate prognosis is essential.”
For the love of god….did she hear nothing I said.
I resisted the urge to kick her under the desk, but she must have clocked the look on my face because she went silent and then said “oh,” very quietly.
I spent the next ten minutes explaining to Deion that nothing is certain and we are just right now trying to find out why things are harder for him now…every now and then I turned to the doctor as if she was five years old and said, “isn’t that right doctor,” to which she nodded and smiled.
She's lucky Deion wasn't in Yellow Lightning mode...he would have zapped her!I know it is hard for docs, I know they are under pressure, and on time scales that are nothing less than ridiculous. But I was so clear….
Is it me? Am I trying to protect him too much? But we don’t know anything yet, and we are sooo trying to be positive that the news won’t be bad, so shouldn’t we be ignoring all those words to a certain degree? Or is it just burying our heads in the sand?
The thing is, we were accused of doing that with Aaron, but we felt that if we stayed positive and fought, he would too…and he had seven and a half years when they gave him six months…so how can it be wrong?…there may be no connection, but we think there is…..
Well, Deion got rewarded with a detour on the way back to school and a yummy extra breakfast, all the while we made up really crap jokes like...'what do you call someone who totally ignores everything you say?'...' a consultant' cue raucous laughter from us and puzzled looks from fellow diners! and he went into school cheered up, giggling and pleased to have a secret that we’d played truant for an hour! I’m sure there will be more questions tonight, so I guess I’ll just do what I do and make sure he feels safe now!And I’m very proud of myself, I didn’t cry until I was safely indoors, and only threw two plates….
Big sigh!
18 March 2009 at 13:31
well I am way new so I dont know what is going on but darn those Drs for making your son upset!
18 March 2009 at 13:41
makes me just want to reach thru this darn screen and give you a big ((HUG))
18 March 2009 at 13:54
Its a difficult balancing act between protecting Dieon and letting them know what is really going on. Hopefully someone who reads your blog and suggest a way they have dealt with a similar situation?
Great blog and I'll see you later for SALSA!
18 March 2009 at 14:05
Doctor's are inconsiderate idiot's. The entire left side of my body is frakked up because of bad calls, misdiagnosis, or other such medical nonsense. I'm sorry your boy is so sick, the doctor's should be more sensitive, but they won't be no matter how hard you ask. sorry, just my experience
18 March 2009 at 15:46
Its amazing how smart you have to be a doctor and yet somehow they seem to never learn what people skills are. Guess thats the difference between book smarts and people smarts... What a trooper. I don't like dr appointment at all. He is doing great it sounds like. I pray for good results for you guys.
18 March 2009 at 16:18
Dearest Sal,
I must have had a psychic moment ,as I had just opened up the computer to email you, re had you heard anything re Deion and his tests, but decided to read your blog first ,oh boy couldn't you just do some amazing kickboxing etc at these so called 'professionals.’. Surely they can't all be as totally crass and lacking in empathy? Sadly, I have to say a good 80% of all neurologists/research professors etc I have ever met ,have been unerringly totally lacking in communication skills, and ,heaven forbid, if you have the audacity(i.e. commonsense your body etc your right to query?) To question their findings etc. If you win through and prove your point you definitely get a red spot on your file I reckon, I became so doggedly determined in my search re the Foreign Accent Syndrome, my file was multicolored in dots I think. Then to find my M.R.I and research findings on the World Wide Web without me being consulted even!!!!!There was more than enough evidence that they had contravened my rights many, many times over and that I could have easily sued, and won. But, a, I don't believe in a suing culture b, they were doing research into Parkinson’s etc and if funding had been taken away as a result of me suing it would have been a terrible thing, so decided to ignore their stupidity ,but still get very, very angry when I think about it all.
Poor you and Deion, I really don't know what the answer is except the training of doctors/consultants is totally inadequate in training them to deal with people as individuals, which includes highly intelligent children such as Deion. I am so, so livid on your behalf ,especially as you even discussed things with the consultant prior to Deion going in!!!Is it worth writing to this consultant(and the Ombudsman??) to make sure she /he doesn't do it again ?To get away with such crass incompetence by just muttering 'Oh' seems very wrong. Think you need to go and do some kickboxing and I need to take Bert for at least a ten mile walk to control our anger!!
Big hugs , love you lots ,need to go and find a magic wand to fight the world with my friend!!
Much love Wendy xxxxxx
18 March 2009 at 17:10
Sally, I'm so sorry for what you are going thru. I wish you could find a family Doc like what my husband was, he is exactly what you need. Someone to oversee everything, make arrangements, and explain things in such ways that poor Dieon wouldn't have to be scared.
Unfortunately, insurance and beuracracy has made it impossible for doctors to be compassionate. My husband was voted the Best Physcian in our city in 2006, we had to close our clinic or go bankrupt in 2007!! Kev now travels to several surrounding ER's. There isn't a day go by that a patient asks, where is your practice, I want you to be my doctor!
Sending hugs to you and your family, if you need someone to talk to send me an e-mail: funkcarrie@yahoo.com
18 March 2009 at 17:46
Your post brought tears to my eyes. It reminded me that as mother's we are our children's advocates and their voice. Stay strong and continue to speak up when you feel you need to.
Sending love and strength...
18 March 2009 at 18:42
I am sorry to hear what your son is going through and shocked he knows the terminology so well. I completely understand you wanting to protect your son from what they say. My other thought is you went in and told the docs to watch what they say. Why not let them tell you what they say without him there and then you can tell him what they say afterwards?
18 March 2009 at 18:52
Every three minutes? That's INSANE.
You are a great mother. Hang in there and keep standing up to those doctors.
18 March 2009 at 23:02
Wow! Very powerful post! As I have said before, You are a strong woman with an amazing purpose!
19 March 2009 at 00:15
I think it's in all of us to do everything to protect our kids. At the end of the day only YOU know what's right for your boy and I think you are right on!
Love and support!
Licha
19 March 2009 at 08:18
Thank you so much everyone, your words mean more than you can imagine, some great advice too...we do have a great communtiy peadiatrician, who was aaron's doctor too, he is a freind and a tower of strength, he does arrange deions app's and stuff, unfortunately he can't control the attitude of the other docs, but he does put things in perspective for us.
but thank you, from the bottom of my heart, it is wonderful to be supported instead of criticized at every turn (yep...doc's do that too!)
XOXO
19 March 2009 at 12:44
Oh.my.God. Sally, I wanted to reach through the computer and slap the doctor as I was reading! We've gotten similar treatment from "professionals" when I warn them about how strong Nik is. They smile condescendingly and go right ahead and do things their way and then Nik manages to kick one of them in the head or chest and they all of a sudden start to pay attention. Sheesh. Such smart people can be so stupid sometimes.
I'm sorry that things are still so uncertain with respect to what's going on with D. Sending love and hugs.