Adi's Blog

Normally, pink, purple & Tinkerbell are his things...so face painting at Maddies 4th birthday party should have seen him with a nice fairy or butterfly face...thankfully...and finally...he surprised me

Ibu's Village Walk -

Ibu is one of 3 staff members of the villa we stayed in. She became Rafi's 2nd Mum and I adore her. She is an amazing woman and I got quite emotionally attached to her because she was so intimate with Rafi. She took us to her village and her house for breakfast where her husband set up an amazing spread of fresh fruits from thier land. We went on a village walk in the soaring heat where she carried Rafi or shaded him...it was so sweet. It was the highlight of the trip for me, especially seeing Ibu and Loying outside of a work environment and being extra fabulous hosts.

Rock Bar Bali

The Rock Bar is the coolest place to watch the sunset while drinking Lychee Belini's and listening to some chilled out tunes.
Its 30 minutes from Seminyak in Jimbaran Bay at the Ayana Resort, www.ayanaresort.com .
It opens at 5pm so be there on the dot to get the right position for the sun to set at around 6.10pm.
An inclinator will take 4 people down the cliff to the bar.
Once its dark the atmosphere is a little lost so take advantage of the daylight time. It should open earlier in my opinion .
One of the highlights of the trip.

Remy 0909

REMY’S STORY

Remy is 2 and a half years old – not even.

Tonight is the evening of his pull-through operation.

I find myself relatively calm, but in disbelief of how it is we have found ourselves here.

How could our little angel have Hirschsprungs Disease?

Where did it come from? Why us?

When I first found out a month ago I was devastated, informed of the procedures and prepared for the worst.

I cried for a week straight. I mean really cried, like on the movies.

What were we doing sitting in the office of a Stoma Therapist last week?

–        this is NOT our beautiful life!

Tonight however, I look around this hospital and see so much worse.

A father smiles at his son who is engaged in a playstation game, tufts of hair sprouted here and there on his scalp indicates he is very sick but very loved.

A little boy about 5 has had surgery on his throat, he is wearing green hospital pyjama’s, he has bandages everywhere, he is so beautiful, he is mute, he is alone…ALONE!!! -  who loves him?
Can somebody please come and love him!
Its been 8 hours now and there is nobody for him after his surgery and Im finding this hard to deal with.  
I cry for him – Brian is his name, and I feel very lucky to have my little Remy.
I feel very lucky to be dealing with Hirschsprungs and nothing worse – if I can say that.

 I wanted to share Remy’s story because we have been to hell and back, just like most of you. There have been some obvious things missed that have caused a meltdown in my life and some things I have found invaluable to help Remy and us through the big unknown.

Most of all though, while going through this 2 and a half years of scrambled confusion, I felt like I was so alone.

So alone from Frits – only a mum can analyse every iota about their child and then they pass on instruction to the husband to help follow the regime that had been analysed in so much painful detail the previous night.

So alone from my friends – they were not understanding my exhaustion or my change in character due to intense stress. No matter how many tears I cried, to them I had a child who was chronically constipated, that all.
I stopped going into detail with them and just saying Remy was fine. They really did not understand and in the end I did not expect them to. Unless in the same situation, one doesnt really get it.
They saw only the outside shell of me and not the crumble my life was in when I got home and closed the door behind me.

I felt like I was floating in outer space – alone.

I don’t feel like that anymore.

I have knowledge and knowledge is power and confidence.

I have met the BGK who are totally amazing and also, a wonderful Mum of a little boy Remy’s age who has pulled me back from outer-space to land firmly on the ground. I feel my roots are so firmly planted in the ground it does not matter what storm in the Hirschsprungs World that blows my way I can handle it now.

I hope this story helps you land safely too.

MEDICAL HISTORY OF REMY

Born in Aix en Provence, France 14^th February 2006.

1 month early, epidural, natural .

Jaundice – Vomiting Bile – Not Feeding - Distended Belly - Pain

 
Manual removal of stool 48 hrs after birth.

X-Ray and all looked normal.

Breastfed 3 weeks until eyes glazed over and went limp.
I was told I was starving him and to go to formula.
Diagnosis - Chronic constipation : suppositories / enimas used in hospital almost weekly until I learned how to do it properly.

4 months of age - a 3 week period of daily unaided bowel motions.
No explanation

5 months of age began solids – situation became again, not a poo in sight.

Monthly paediatric visits,

Was advised to stick to one food type each week.

EG:Green Beans one week, spinach the next etc.

This didn’t help so had to keep up Microlax enimas 2 x weekly.

Advised not to let him go more than 2 days without bowel motion in fear of Enterocolitis which is why I gave him a Microlax / Suppositories every 3^rd  day.

To keep his bowel clear and unobstructed.

 
Age 7 months: Pediatric Gastroenterologist at Hospital Aix en Provence FRANCE advised a Manometry test for Hirschsprungs Disease. The waiting list was 2 months so we made an appointment. In the meantime we were advised to add FORLAX to Remy’s milk daily.

This helped but still had to use enima’s every 3 weeks on average.

 Within this 2 months we visited Australia for help in English so we could understand properly, question and also get a second opinion.

 
Age 8 months : October 2007 – AUSTRALIA

Pediatric visit.

Advised an X-Ray which showed nothing abnormal.

Bowel was quite full although he had an enima 2 hrs before appointment.

Dr advised to replace daily Forlax with daily Actilax 5mls, to not worry so much with his diet and to proceed with the test for Hirschsprungs Disease back in France although it was highly unlikely to be diagnosed as Remy was thriving so well.

Actilax worked very well although it remained that every 3 weeks on average I needed to give him an enima. This is something I still cannot explain.

 
Age 9 months : November 2007 - Marseille Hospital, France

Remy had a test for Hirschsprungs Disease.

A manometry was performed to measure the tension in his muscles in the rectum. The results for this test were normal.

When we asked about doing a biopsy we were told it wasn’t necessary with the results of the manometry.

The paediatric gastroenterologist concluded Remy had a lazy bowel.

I ticked Hirschsprungs Disease off my list and continued chasing my tail around for a cure fro Remy.

 
Age 10 months : Remy started crawling. He had 3 weeks of daily unaided bowel motions. No change in diet or medication.

After 3 weeks the constipation resumed.

 
Age 11 months – 19 months : Actilax was being increased slowly as he grew. Enima’s every 3 weeks on average continued, this was at least a workable pattern.

Each day was beyond stressful so we decided to move back to Australia to get to the bottom of it – so to speak!

 
Age 19 months  : ( one month before leaving Europe for Australia)

Bowel motions became fewer on regular regime and enima’s increased.

With the advice to keep the bowel empty I was finding the stress of monitoring this huge and Remy’s discomfort distressing for all of us.

Very large belly full of gas.

Drinks 750 +/- daily.

Still using Actilax. 15mls

20 months: AUSTRALIA

Actilax stops working at 15mls daily

 
Age 23 months – January 2008

Dietician Consultation

Went cold turkey on Actilax as it wasn’t working.

Began a Gluten, Wheat and Dairy free diet

4 fish oil tablets per day

Overnight change and 1-2 bowel motions daily.

Had to up the fish oil pills to 8 x daily when motions decreased around 4 weeks after we began the diet.

Duration = 6 weeks then poo-ing stops overnight.

 
Hair Analysis done.

High Cadmium Level.

Diagnosis – Low stomach Acid.

Blackmores Treatments for this

Which produced pebbles of poo daily.

In my time searching I have been to so many GP’s, Naturopaths, Kinesiologist, and even a Clairvoyant…used homeopathics and all types of ‘constipation concoctions’…all with no luck - except for my devine dietician!

I was impressed when I saw the results of her putting almost the same amount of brain power into thinking about Remy as I did…she even defeated Hirschsprungs for a while. We all just need to come across a person like her to take interest in us…and maybe we would feel like we have a pillar of strength behind us to push us along.

Perth Australia - Basically there was a shift in activity when I was at the height of a melt-down. Remy was being affected psychologically with always wanting a nappy or pants on for fear of getting an enima and I could not bare to see him go through any more.

I printed out Remy’s Medical History and took it to the Australian Pediatrician I went to see when Remy was 8 months old.

I placed his copy in front of him on his desk, asked him to give me quality time, to turn up his listening skills to 200% and when I was finished talking to him he could tell me what we were going to do to fix this situation.

He did exactly that. Now we get lucky, although he said he doubted Remy would have Hirschsprungs as he was so well developed.

He recommended a surgeon who also stated she did not think he would have Hirschsprungs due to his thriving state but she did a biopsy and confirmed the next day he had Hirschsprung’s Disease.

I cried my heart out. First reaction was relief - I wasn’t crazy!

I hadn’t just given up 2 years of my life for nothing…we had a name for it!

Remy had a cure within reach!

From there I went into the stages of mourning, but I was assured this is normal!

 
Remy was booked in to have surgery 2 weeks from the day we found out.

We did a heavy regime of cleansing with Movicol, Actilax and Microlax.

2 days before his surgery he got a fever and a very noisy belly and

he was admitted into hospital with suspected enterocolitis.

 
The hospital ordered daily irrigation and antibiotics and our home regime stopped for this to occur.

I should have forced the issue to continue our regular regime but was assured the irrigation was enough.

By the time Surgery day came he hadn’t poo-ed for 3 days.

This was going to be a problem. 

In the theatre he went all floppy in my arms, he was placed on the operating table where I kissed his perfect little belly and he was on his way. I fell out of the door into the arms of a tissue holding senior hospital volunteer who then took me to my husband in the tea room. Parents filled this room waiting for their precious angels, but non longer than us.

For 4 and a half hours he was under anaesthetic having further biopsy’s and after 12 cups of tea we were finally informed the pull-through was not performed as there was too much poo there. Surprise surprise!

The biopsy’s showed that Remy had a very short segment of his large intestine without ganglion cells. 10 cms to be exact. Great news.

Before this operation I had no idea what state Remy would be in when I saw him againr. Him having a colostomy was a double knot in my shoulders, but I was prepared…well only on the outside really. Inside I was dying of dread.
I got my little boy back with 3 holes in his belly but no colostomy.
Our magical surgeon marked the transition zone and made an appointment in a week for the pull-through.

This last week, the week between operations, we have been having ‘hospital in the home’ visit the house for daily irrigations.
Every one was tense going through this. I felt like I was handing him over to a torturer for 15 minutes but it would be ok because I would cuddle him and it would all be ok in the end. This played with my head big time and I don’t think Remy has ever been so spoiled in his life.

We agreed about a regime in this week. I would agree to the irrigations which I felt didn’t do much at all if our surgeon agreed to the usual routine I found works to get a daily result. This worked perfectly.

Today I delivered my little angel to hospital with the flattest tummy he has ever had. He looks taller and even more handsome than ever.

He will go in at 8.15am to have his pull-through with NO colostomy! HOPE!
I feel so confident about this. It will all be perfect after this!

Things I recommend

• Be in control of every move/decision that is made regarding your child.

YOU know your child best. Better than anyone.

You are a specialist!

• SQUIRTS for kids: Bowel irrigations were not working for Remy.

When I add 4-8 SQUIRTS he did 2-4 poos a day. It softens from the top.

• Diet is an amazing thing. Find a dietician
  

UPDATE:

Its done.

Our little boy had a Soave pull-through procedure done yesterday.

He laughed all the way to theatre with Digger the Mole and they both breathed in strawberry gas. I didn’t need the senior volunteer this time.
4hrs later the surgeon entered the tea-room and told Frits & I Remy was fine.
No colostomy. No colostomy. No colostomy!!!!!!!!!!!!!!!!!!!!!

Lots of tubes in and out of his body and very doped up.
He spent the night very ill and the room was busy.

Today was not a good day – as expected the 1^st day after a major surgery. Sick, fever, not drinking or eating, in pain and sick and tired of being poked every 10 minutes.
I keep saying ”it will all be over soon my darling”, but he just doesn’t get it!

One thing I can say though, today - 12 hours after surgery…Remy did his first poo!