Another surgery : March 2010

I know my last post said that I will talk about the transition out of PICU and into a general ward but having a child severely affected as the result  a near drowning we quickly found out we cant plan anything.

The only thing that I can say for sure with my blogs is that my plans of what I want to write next can change in a heart beat. So I will write about the past 4 years intermingled with the present until Ive caught up to tomorrow.

First thing in the morning, Samuel is having some surgery, in the grand scheme of things this surgery is very minor. So minor in fact it should only take 10 minutes. Samuel will be getting an “entry star” gastrostomy  button which is a button that is a bit more permanent in his stomach. After this initial insertion the entry star needs to be inserted by a Doctor. It is secured inside the stomach by a star looking anchor which spreads out by a gadget once inside the tummy. This is so Samuel can be fed straight into his stomach as he cant eat orally any more. I never wanted to get the entry star as I cant replace it myself if it does come out and also it looks quite gory and painful…..but its not painful, just ugly.

The one he has at the moment is called a “mic-key peg’ which was the type we have persevered with since August 2006. The reason we have decided to change buttons is because these buttons cost about $250:00 each, the Australian Government gives you 3 per year. Well my Son who doesnt like to stick to policies and rules didnt like the idea of only getting 3 a year and so decided he wanted to change them every 2 weeks rather than every 6 months with 1 spare. This means I have to give up some of my independence and go for the star….Only fitting really as we call Samuel our STAR….He must be telling us something. XX.

The reason Samuel needs his buttons replaced all the time is because his tummy muscles spasms (is dystonic) and crushes the balloon (which is the anchor internally that is filled with water). It causes the balloon to leak out all the water by a tiny little hole which then allows the button to just fall out of his tummy. If we dont put the button back inside Samuel within the hour the tummy seals itself quickly then Samuel would have another 5 hour operation to replace the old hole (stoma) within his stomach. Otherwise the only way we would be able to feed Samuel is through a nasal gastric tube. (Which is what Samuel has in his nose at the top of the page near the rainbow.)

The other procedure Samuel is having tomorrow while under a general is having his bottom baby teeth removed. They are so loose and so its very dangerous for Samuel. His new teeth are coming through all crooked because of the baby teeth. If one of the baby teeth get swallowed and then aspirated (breathed into) into his lungs that can cause him to need major surgery or even death. Samuel has swallowed teeth before but thankfully they went into his stomach. We had to get x-rays to make sure…..Did you know that swallowed teeth can travel down the bowel for up to about 4 months… Samuel had x-rays up to 3 months later and we could still see the tiny little tooth. I never found it in the nappy. ( I wasnt going to look if I didnt have to)

Even though Samuel has had huge major surgeries, I am just as nervous with this minor surgery. It is still an anaesthetic with its own risks. Ive got to prepare Samuel throughout the night as he has a feed running all night. Samuels feed has to be turned off at 2AM then he can have water and medication until 6AM. He must be at the hospital by 715AM as he is first on the list.

My issues within myself are that Im apprehensive about the surgery as he has had much more major surgeries than this and with some had a turbulent time but managed fine. He has had minor surgeries and we have nearly lost him. We can never keep up with or predict how Samuel will be with any procedure Samuel has had or going to have in the future.  Today my diet was hard to stick to because of the stress, its OK I will be alright tomorrow.

Samuels strong, Im strong!

Jo-ann XXX

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6 Responses
  1. Bronwyn says:

    My famiy and I first met little Samuel at our amazing friends Charity Night – The Vanags Family & Friends Charity Night in 2007 and think about him often. Reading your blogs is truly an inspirational experience.. he is so strong and really is a little star… xxx

    • theboss says:

      Bronwyn, Thank you for your lovely words….XXXX I think about the Vanags Night often, and of their wonderful friends that made the night such a success. Thank you for thinking of Samuel he is my special STAR….XXX I will see you in a couple of months so I can hug you in person….XXX
      Jo-ann XXx

  2. Kim says:

    Samuel is a truly amazing little boy. I wish i could meet him. Tell him that i said he is so brave and strong, and people that have never met him love and care for him. XOXXO Much love! Kimmy

    • theboss says:

      Kim, So many people have told me they love my son when they havent even met him, he has touched the lives of so many. He is the strongest, bravest person I will ever know in my lifetime. I will definately tell him and will give him a kiss from you…. He loves his kisses…XX
      Jo-ann XXX

  3. Killian says:

    I am a biology teacher at an alternative high school in Lowell, Massachusetts, USA. I am currently teaching cellular respiration and went on-line to find a story about the effects of oxygen deprivation on the brain. After about an hour searching I came across your blog. I printed out your story and read it with all my classes. Lowell is a city outside of Boston and my students have quite a diverse background. Many of my students have quite compelling histories themselves. We were all very moved by your writing, which we can only imagine how difficult that was. My students are now very concerned about how Samuel and Taylor doing today. (As well as you, your husband, and Tanja)! We just wanted you to know that the Molloy Alternative High School in Lowell Ma, USA is wishing you all the best. Happy holidays.

    Mr. McAnaney

  4. Crystal says:

    Heard about Samuel today though Jim Reiser, who runs The Swim Lessons Co here in SC. I am sorry for what all of you have been thorough, I hope your story helps to educate. As a Mom, my heart breaks for you. Please know I am praying for you.
    My little man has Autism, so I know that the right help means everything.
    If you have a chance, would love to know how Samel is doing.

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