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Frustrations with the Hospital.

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Frustrations with the Hospital.

Post by freedspirit on Thu Jul 26, 2012 5:14 pm

I have shared on here in the past that my son has a heart condition...basically everything is crossed over, the small side of his heart which should be oxygenating his blood is doing the big job of pushing the blood around his body..Anyhow his ticker is starting to run into difficulty and has starting leaking,,the first step in this process is to get a pulmanary banding where they will slightly constrict one of his valves,,this will two things hopefully stop the leak and also start to build muscle in the side that had been oxygenating his blood so that in the future they can attempt to correct his heart.
Tis scary and now that I am typing this I am wondering what on earth I am moaning about...
The hospital where he is scheduled to have surgery are very reluctant to give a date due to acute patients coming in and messing all the dates up. However in the mean time I am trying to run my business, I have not taken any jobs on during the guesstimated surgery time,,but it is getting to me that I dont know how to plan my life. Many festivals are on during this time,missing out on the $$$ ,Awesome instructors coming to N.Z..Which doe'snt happen regularly..Ohhhh and the N.Z body art awards are on at the end of Sept..Futuristic theme..I would dearly LOVE to enter this year,,But I have no idea what we will be doing...
My child is the most important thing to me and it makes me feel awful to worry about things that dont even compare in importance..I dunno why I am sharing,,I have tried not to think about this surgery..He is my middle child,,a quirky little man his is,,an awesome sense of humour and is the one in the family who has gotten all the conditions..He is going through aspergers diagnosis at the moment,,of which I am quite sure he has. So I also worry how he will cope after the surgery, He had a difficult time just doing the MRI,,due to sensory issues, he struggled VERY much with the feeling that was left in his throat after having tubes down there, from being under aenestetic.
I have shared more than I intended..I think all the anticipation of this must be getting to me...Thanks for listening..
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Re: Frustrations with the Hospital.

Post by freedspirit on Thu Jul 26, 2012 5:42 pm

Oh...Had to laugh..Funny how these things happen..I now have an appointment!! YAY!!! around the 13th of August...I get to finish a weekend full of facepaint bookings then off we go to Starship.. Thankyou God for making this all work out..time wise...Now we need the operation to be smooth and successful.....Any prayers would be MUCH appreciated for my little man..
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Re: Frustrations with the Hospital.

Post by Luvs to paint on Thu Jul 26, 2012 6:08 pm

Praying for all to go well.
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Re: Frustrations with the Hospital.

Post by fesspenter on Thu Jul 26, 2012 6:34 pm

I love how you put your wish out there... and your wish came true!
We will have to check back with Miss Ronnie...she wished for a maid and a gardener.

Don't forget to take care of yourself all during your son's surgery. You are a better Mommy when you make the time to take yourself for a tea or coffee.

Happy Healing for your son during his surgery.
xoxo
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Re: Frustrations with the Hospital.

Post by veelux on Thu Jul 26, 2012 10:08 pm

Prayers for all. Fesspenter is so right, take care of YOU too so you can help him heal. Best wishes to the little man- give him a big hug from all of us here on the forum.
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Re: Frustrations with the Hospital.

Post by JUST on Fri Jul 27, 2012 1:19 am

I want to tell you that it's all going to be alright . I was born with three holes in my heart and in the early 60's they repaired 2 of them in 98 they repaired my valve ... I am now 53 yrs. old and doing ok I still have heart problems and tonight i'm wearing a halter monitor and I can't sleep but I'm still here.......I guess what I'm trying say is that I will pray for him and you and I know in my heart that he is going to be fine ........ oxox I love you I love you I love you
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Re: Frustrations with the Hospital.

Post by freedspirit on Sat Jul 28, 2012 4:42 pm

Thanks guys. i appreciate the prayers very much and fesspainter your spot on..I will look after myself. This is the easiest part of his surgery and I feel confident that everything will be alright..Thanks Just..It is amazing what the surgeons can do now days..I do get a bit scared with his future operations as he does have the most difficult surgery to come, they have only done this surgery twice on children my sons age..one was sucessful and on was'nt. When it comes to that one,, it is really hard to hear the word..Everything will be alright...We pray,, we love our boy..I walk in it one day at a time....And on a positive not we are off to a special day with kids like my Heart child to have an art and craft day..and yes I will be face painting...Looking forward to having fun today..I better get out of bed and have a shower then... Very Happy
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Re: Frustrations with the Hospital.

Post by Pilareta on Sat Jul 28, 2012 6:21 pm

Sending strength, confidence and warm hugs. Your little man and you are in my thoughts I love you
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Re: Frustrations with the Hospital.

Post by freedspirit on Sun Jul 29, 2012 12:03 am

Thankyou Pilareta..Feeling the love! Very Happy
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Re: Frustrations with the Hospital.

Post by PaintedFaces on Sun Jul 29, 2012 10:01 pm

Hi Angela, my thoughts will be with you and your little man during his heart surgery next month. I can't imagine how scary that would be.

My Mr Eight is Aspergers as well, diagnosed when he was five. It's not easy, is it? Even once you understand why things are the way they are. My boy has sensitivity issues in his mouth and throat, lots of ordinary foods cause retching and gagging. So a breathing tube would be a big problem. Owie Sad

Take care. I'm a bit clueless on healing times for that kind of major surgery, but maybe we'll see you at the NZBAA in September? It's still ok to think about something fun for yourself in the middle of all the stress. Smile

Kara
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Re: Frustrations with the Hospital.

Post by freedspirit on Sun Jul 29, 2012 11:17 pm

Thanks Kara.

Yeah the breathing tube was a nightmare for the poor wee (well not so wee..rather tall) young man. I think they will be having him quite sedated after the op..I would hate to see him do damage to himself with not coping.

And yes our little aspies are very interesting .. I used tho think,,My goodness whats wrong with him..but over these years of getting to know him..I would'nt change a thing..All the things that would once worry me are all part of why I love him so much now....

I have heard that young ones bounce back quite quickly..At the minimum and all going well..no infections..taking the banding well etc..He will be in the hospital for 7 days ( Can you believe it ?) I have allowed much more time to heal at home..and my husband will be on ACC with a back injury..So I will be free to continue my business and frivolities..Funny how even the bad things turn out to be good. I do hope to go to NZBAA, and it would be lovely to meet you.

Thanks for your words of encouragement Kara. Very Happy
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Re: Frustrations with the Hospital.

Post by LoriSamson on Mon Jul 30, 2012 3:22 am

Hang in there.... my prayers will be for your son and for the rest of the family and care givers. I've had two terminally ill children and I was the primary care giver. Looking back, I don't know how I got through it except God's grace on me. (my son in 86 and my daughter in 94) This will be a trying and difficult time but you'll rise to the challenge (it's the momma in us)and your son and others will see your strength and be encouraged by it. I wish there would have been the internet and facebook back then so I could have had a place to vent and be encouraged. We are your extended family and don't mind being here if you need us. Most of us are mothers and fathers ourselves and some, like myself have been in the trenches and lived to tell about it.

I will pray your family... I promise! Hang in there and hug your son and tell him it's from some face painters around the world who care! Blessings
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Re: Frustrations with the Hospital.

Post by freedspirit on Mon Jul 30, 2012 6:16 am

Lori..you know I used to think of cyber relationships as not being real at all and would quite often post in a reserved fashion. You have touched my heart deeply, and my husbands.(In tears even) I feel your love and I am very encouraged to hear from someone who has indeed been through some incredibly hard times.
I cannot imagine how we do get through those times. I believe you are right about God's grace being exactly what gets us through and beyond. I am so sorry that you have had this cup to bear.
We took Ashton ( my 8 year old heart child) to have prayer last night..On the way home he said to me matter of factly..Mum,,I am going to be alright..it's not going to hurt at all. He was so bold in his statement of this fact,,it was gorgeous. .I am pleased that he has peace.
Thank you so much for your prayers,, and I am looking forward to passing on your hugs. Much love from us all. I love you
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Re: Frustrations with the Hospital.

Post by facesbybelle on Mon Jul 30, 2012 12:29 pm

The surgery will be a success, you have many praying. God Bless
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Re: Frustrations with the Hospital.

Post by Luvs to paint on Mon Jul 30, 2012 4:38 pm

Do you think receiving a postcard and a get-well card would help cheer him up? I'd love to send him some from my area! PM me your address.
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Re: Frustrations with the Hospital.

Post by Pilareta on Mon Jul 30, 2012 5:08 pm

Oh, Lorie, that's a great idea! Freedspirit, if you think it could help him, I'll be more than happy to send your lil man a postcard from Spain sunny
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Re: Frustrations with the Hospital.

Post by LoriSamson on Mon Jul 30, 2012 6:05 pm

Great idea Lorie! If you could post a post office box # that some of us could send a card to him.

BTW- I lost a third child to a drunk driver too. I have spent most of my adult life in deep seasons of grief. It's only God's grace who got me through. I realized that other people could not truely understand how difficult it is to care for a truely sick child and then lose them. I came to the conclusion that I am my own hero. Because only I know what it takes each morning to get out of bed, put a smile on my face and be the best I can be. I feel I have earned my own padded cell somewhere but have choosen not to take it. That qualifies as hero statis in my book.

Its why face painting means so much to me. Making kids smile all day is such a blessing to me. My husband says I just shine once I'm in the zone. "Laughter doeth the heart good like a medicine." Send us an address so we can send some smiles your sons way!
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Re: Frustrations with the Hospital.

Post by Luvs to paint on Mon Jul 30, 2012 6:22 pm

Lori, I cannot imagine the pain of losing 3 children. Your shoes are not ones I would wish to walk in. Many blessings and hugs to you.
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Re: Frustrations with the Hospital.

Post by freedspirit on Mon Jul 30, 2012 6:57 pm

You guys are SO SO Awesome..I cant stop crying now...mostly out of appreciation..and sadness for what you have been throught Lori.You know it's the little things that are so special at times like these..

Lori,, you are my hero, I cannot ever imagine what you have been through, you are a true champ to get out of bed and put a smile on. I can imagine that you are a blessing to so many people, Sometimes only someone who has endured so much is able to reach out to others. I would love to see you little light shining when you paint..Funny my hubby says the same thing when I paint too. Painting has been such a release for me.

My little man I am sure would LOVE to recieve you postcards from all over the world...This is my adress..I feel alright to share on here...
He has agreed to the nick name...Brave Heart
159 Onslow Street
Kawerau
Bay of Plenty 3127
New Zealand

Thankyou all from the bottom of my heart...OMGosh..I am still in tears..Happy ones I love you
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Re: Frustrations with the Hospital.

Post by michellesfantasyfaces on Tue Jul 31, 2012 7:25 am

I hope all goes well!
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Re: Frustrations with the Hospital.

Post by l!zzie on Wed Aug 01, 2012 5:32 am

Thinking of you all! Fingers crossed!
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Re: Frustrations with the Hospital.

Post by Shelley Bellefontaine on Wed Aug 01, 2012 2:04 pm

Lori my heart goes out to you. I always say that as a parent I have gone through the second worse thing a parent can. I won't go into details, too long and boring Very Happy but I have had a glimpse and came too close.

Angela, sending positive thoughts your way that your son will have a quick and easy recovery. It is difficult to see your child suffer and attached to so many machines.Thank goodness we live in a time that modern medicine performs miracles all the time, I know , I live with one Very Happy
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Re: Frustrations with the Hospital.

Post by Affordable Face Magic on Wed Aug 01, 2012 2:42 pm

That's a great idea Lorie. If you feel like it, PM me too, Please?
My Godson has all his major organs on the wrong side. He is a strapping, 6ft 6in 30yr old Merchant Marine now. Will keep you in our prayers.
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Re: Frustrations with the Hospital.

Post by freedspirit on Wed Aug 01, 2012 5:52 pm

Hi Pat..Wow!! 6ft 6....Human beings are amazing creatures,,what we can endure and survive is outstanding.. Thankyou for your prayers Very Happy
I did post my address above if anyone wanted to send my little braveheart a post card... Very Happy
Another subject completely..I have decided not to enter the nz body art awards this year..I feel it will be too much for me with everything going one..BUT there is another one in Feb..I was talking with my artistic 6 year old and asked him if he would like to enter..He was really excited and wants to paint a monster with abs...CUTE! Now I am excited...and I have a little person to train up...
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Re: Frustrations with the Hospital.

Post by freedspirit on Wed Aug 01, 2012 5:53 pm

Shelly..Thankyou for your encouragement..I appreciate it very much.
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