In my shoes.
Mastoidectomy: is a surgical procedure designed to remove infection or growths in the bone behind the ear (mastoid bone). Its purpose is to create a “safe” ear and prevent further damage to the hearing apparatus. A mastoidectomy is performed with the patient fully asleep (under general anesthesia). A surgical cut (incision) is made behind the ear. The mastoid bone is then exposed and opened with a surgical drill. The infection or growth is then removed (read; scraped away). The incision is closed with stitches under the skin. A drainage tube may also be placed. Source
According to Ivy’s ENT doctor this is a ‘fun’ four hour operation and there is no guarantee that it will cure Ivy’s ear problems,
yet it was suggested that we go ahead with it, consider it as an option
and there are some people who believe
I should have agreed to it
and are upset
because I didn’t.
Tell me, if it were your four year old daughter who, in the last four years, has had
2 sets of grommets
1 adenoidectomy
2 PICC line insertions
and 1 Port insertion
all under a general anesthetic and
all with the promise of doing good things but having really done very little at all
would you go through with it?
Or more to the point, could you put this little possum
through the trauma of another operation with limited chance of success?
Because I can’t.
I just can’t.
I know who thought you should have done it. You were and are absolutely right, though.
I can’t imagine. I’ve done one set of grommets for each of my children and would be VERY reluctant to do anything else. If however, you want to chat to anyone else pls let me know. My brother is an ENT (that always makes me smile, I think of him as a character from “Lord of the Rings”) just if you wanted anyone else to chat to about other options. He’s gorgeous and very helpful.
And on a lighter note
your little girl is STUNNING!!!!! x
I can’t imagine how hard it is to be in those shoes. You always have to do what feels right and I have to say that based on the fact that they’re not making any promises about success and based on the huge risk of hospital borne infection and other complications that your judgement is probably spot on.
xx
I wouldn’t be able to do it. You’ve got to go with your gut. It’s hard not to worry what other’s think but only you and your husband can truly make the best decisions for Ivy because you are the ones who must live with the consequences day in and day out.
Natalie
PS. I love reading your blog and seeing your photography.
Oh Tiff, do what your heart tells you to do. Hugs.
Tiff – Pray very hard about this, and let the Lord give you the answer. Be open to His wisdom. He will guide you – just let him. I also would suggest talking to Ivy about this as well. I know she is young, but as they say “out of the mouths of babes comes wisdom.” This is Ivy’s decision as well and she is am amazingly mature little angel after what she has gone through so far.
I will be praying for your guidance also. I do understand your concern. Can you get more than one opinion with your insurance situation there? If so, I would run this past two or three doctors and research it myself to see its success.
Love Kathleen in Memphis, TN
You know, just because you CAN do something, doesn’t mean you SHOULD.
Part of our role as parents is to advocate for our children. If they are sick, you advocate for action to be taken, right? Advocating for Ivy, against another operation, IS taking action, Tiff.
She gets her warrior spirit from you, that girl.
XXxx
I am going to talk about my Mum.
In February the doctors wanted to do a bronchoscopy on Mum and insert a stent to open her airways. Mum was reluctant as she had already had a bronchoscopy and the coughing fit she had after it was so absolutely horrid that she never wanted to have to repeat it again.
One of the young respiratory specialists came in to have a chat (it was his boss that was pushing for the op). I asked him what he would do if it was his Mum and he said he wouldnt advise his Mum to have the op. He was very honest with us and said that when doctors feel helpless they like to poke their patients and hope that the slim chance becomes a reality.
Sometimes my lovely, it takes more strength to sit on your hands, than it does to poke and hope.
you know that gut feeling you get…….well its there for a reason……….listen to it hon.
We have your back.
hugs
I was going to say the same thing as Mum. Doctors do, when they don’t have any solution, they like to poke and prod and hope something magical happens so they can blame it on the prodding. They like to test and test and test and then poke some more and if that doesn’t work, how about we experiment a little?
It does take more strength to do nothing.
xx
Oh sweety, *hugs*. If you really feel that this isn’t the right thing to do, stick to it. We’ll be here for you. xxx
You are doing absolutely the right thing. As Veronica & Kim have said, Doctors aren’t confident enough to stop prodding just in case they accidentally do the right thing.
(((((hugs)))))
Hell, the drs won’t give you a guarantee that it will help in any way. Your heart is walking you in the right place.
I’m with you Tiff. Never ever forget that you know her best and therefore you know best. I don’t care how many medical degrees they have.
I have become a firm believer in a mother’s instinct. I ignored that little voice in my head once and have regretted it ever since (it said to me, the day before the accident, after another bad night, ‘just go home’).
Molly’s orthopod dropped a bombshell at her last annual “routine” hip review – he wants to rebuild her hips. I wanted to grab him by the throat and say: over my f_ing dead body. She’s been through enough.
As has Ivy. Stick to your guns girl.
“Option, no guarantee”? Not very convincing if you ask me. From where I’m sitting I think you’re doing a great job. Keep listening to your instincts.
Hi there – love your name
While I have NO idea what it must be like to be in your shoes, I will offer you this: with any medical procedure there is never a gurantee NEVER – if all the other procedures/surgeries she has had haven’t helped – maybe JUST maybe this one would — if it would remove an infection that is there? I don’t know – its really a hard call and like other comments here – you as the Mom have to go with your heart and what you think is best for Ivy. Mom’s really do know best. I will pray that you are led in the absolute best direction for your little Ivy.
By the way, I have been reading your blog since about June or July of 2009 – found it through a comment you left on Heather Sporh’s blog. You amaze me, in a good way
. I love your photographs and your unending love for your unending wearwithall you have with all you have on your plate and all you have been through! And I think my life is challenging!
God Bless you and may you feel his soft hand as he guides you through this life!
xoTiffany
What does Ivy say?
Stick to your guns. You’re her mum, and you’ve got to listen to your instincts.
Here with you, darling. I’ve made some medical decisions for my kids, and for myself, which have gone against doctor’s advice. I have never regretted them. That internal voice of ours is there for a reason… trust that voice. You are wise and loving, and would never put your child at unnecessary risk.
((((((((hugs))))))))))
I don’t know that I could even if they said I had to…
The ENT has failed to successfully treat/cure Ivy’s ear problem so far & in my opinion has suggested this procedure as a last resort to save face, & not necessarily for the best outcome for Ivy. He has at least been honest enough to tell you that there is no guarantee of a successful outcome with this procedure, either. That admission alone would be enough for me to make exactly the self same decision as you have made. You have made the right & responsible decision for Ivy. If there are no guarantees, why should she have to suffer more trauma, when she has already been through so much. I definately feel that it’s not just your heart but your head as well, telling you that this would be all wrong. Be totally confident about your decision, regardless that some may disagree, including the ENT or paed. xoxo
Agreed It wouldn’t hurt to get 2nd or 3rd opinion if possible- who knows you could find as more humane/skilled doc than you currently have which would be a blessing. as for the decision you and Dave can only do what you think is right. A decision made out of love could only be the right one. Besides Ivy could always make the decision to do it a teen or adult.
My parents didn’t get a lot of medical advice for wetting problems i’ve had since childhood. As an adult i have sought help several times. A severe head injury as an adult which damaged nerves from brain to bladder led to drastic measures I am dealing with now.
There is an amazing amount of love in this blog and its respoders. Lovely!
Finally a curious question – i have made several posts now – Why am i still listed as new comment? I always like new information.
I never weigh the positives in that situation. I always weigh the negative side effects of not doing the procedure against the negative side effects of doing the procedure. If the risk of doing nothing is greater than the risk of doing something, I do that something. Otherwise, I wait and pray and hope that my precious angel gets better without having to go through more medical mess. You are a great mom. Trust your gut no matter what everyone else says. God bless you and yours.
I would only consider this if they were giving me a guarantee or at least an 85-90% chnace of a cure. 2nd and 3rd opinions available?
Just joining your journey. Hoping you have peace with either direction.
Tammy@If Meadows Speak…
(Tx, USA)
No one should ever judge this choice. You looked at all the information and made sure you were informed. And made the choice that was best for Ivy. To have anyone doubt this is just mean spirited.
She’s so cute and wonderful. You are amazing. The surgery is painful. I’ve had it and my ear isn’t the same. Thank you for sparing your wonderful daughter such pain. She is so full of energy and light in her picture.
“When in doubt cut it out” spring to mind…
Its never the answer.
The only time that applies is when you change the wording a little “When in doubt, Whip it out” as in boob for breastfeeding.
Stick to you guns Tiff. I’m sure Ivy will thank you for being such a strong advocate for her when she is older.
I don’t know why, but among some, there is this perceived notion when you have a medically fragile child that if you don’t jump at every medical “opportunity” dangled before you as an option (no matter how half-baked) that you are somehow willfully depriving your child of a shot at wellness rather than potentially protecting them from undue harm.
And then there are others that wag fingers for being too proactive — the message being that the parent is somehow failing the child by depriving them of the opportunity to heal on their own.
Don’t listen to the two extremes, Tiff, because you’ll never win. Listen to your heart, to the depth of knowledge that you and you alone posses regarding your own children, to the brilliant common sense that you have in abundance.
And when it comes to the rest, just stick your fingers in your ears and hum.
Loudly.
(Hugs)
~Michelle
Poor sweet baby. You know what she can tolerate, and the cost vs. benefit better than anyone. How horrible to have to navigate this, complete with judgement from all sides. Wishing you and Ivy all the best.
hello dear one … of course you should not have done it … a mother knows best. ALWAYS. FULL STOP.
My just five year old has been suggested a proceedure that has one long term study done on it with 14 particpants … after 12 months only four were still ‘cured’ … it would mean six weeks in brisbane to have the castings done, we live 2500km from brisbane … I know this is different to your situation but enough is enough and I think you have done and been thru enough as has your wee one for sure …. be comfortable with your choices as they are the right ones for you … le xox
You’re her Mum and you will always make the best choices for her. You do an amazing job, don’t ever let anyone make you feel bad for your decisions. xx