Give her a break!!

After 13hours in emergency with critically low potassium again, the day for the op arrived.

But.....the operation was not successful.  once the surgeon got through the messy, raw oesophagus, she found it was not safe to cut through to reach the stomach.  A rare situation of course, but her bowel was a little high and fully placed across her stomach.  So after all the preparation, she woke in recovery to nothing different.  

She was then placed back on the cannula with drip, feeding etc into her  veins, she waited another week in hospital and was operated a couple of days ago.  This was plan B and so key hole surgery was performed to place a low profile PEG in her stomach.  This is now day 3 after the op and she has been in excruciating pain -even with the morphine, there was a severe allergic reaction causing nausea and horrible itchy skin, so they have been experimenting with other pain relief combinations.  She has a multitude of tubes and machines attached to her. Her specialist, in response to her unusually large level of pain, has just taken her in for a scan to investigate the internal situation.  

Can she not be given a break????

Meet PEG

Update on my girls life-booked for the Percutaneous endoscopic gastrostomy, or fondly known to her friends as PEG.  The PEG tube will be passed into her stomach through the abdominal wall. Night feeds will sustain her, so really putting a load of hope on the effectiveness of this to allow her to stay out of hospital and get on with her life - so to say.  Scary for her though and she is going through the trauma of fear and the unknown.  It's an awful thing to have, but it will hopefully give her some relief.  Won't help with the constant hunger and supposedly won;t help at all with the rumination, but maybe this is the break we have all been waiting for to give her some relief and possibly a chance to do things that will take the focus off the symptoms. 

Another ICU visit

So the bloods came back at 2.4-no waiting allowed on this result.  Straight to the Mater -where they know her case well and respond immediately. Quite the seasoned hospital patient, she packed her bags with heat pack (for relief for the cannula arm pain) phone and charger and the usual toiletries and comfy PJ's.
The line was huge but we got through within about 10minutes - bravo to the emergency staff.
No bed available, but taken in and given a bed as soon as possible. The bloods were tested again, and much to our dismay, the results were bad. 1.8K. This means straight to ICU.
Overnight stay with wonderful support and medical care, and out in the morning after a great top up of potassium. Results when discharged - 3.4. Normal is between 3.5 and 5.5, but we are thankful for anything above 3 these days.
On the way to hospital to pick her up, I received some great news.  Instead of waiting on the long 3month waiting list, she is booked in for a life saving procedure - the PEG - in a fortnight.  So great to greet her with this happy news.

Another test of strength and fortitude

OK, so blood test yesterday was reported to be 2.7K - potassium level.  This means certain potassium cannula in hospital, possibly 1-2 nights.  Last week was a disaster stay in hospital, with doctors and nurses of our local regional hospital messing things up so badly, that her veins were burnt.  Concentrated potassium racing into her veins!
The highly seasoned and experienced nurse, in response to my girl's cries of pain, told her she needed to toughen up.
So, so reticent to go to the hospital and be at the staff's incompetent mercy, my little trooper chose to take oral potassium supplements and have another blood test this morning.  We are waiting for the results.
Rumination Syndrome (RS) is so debilitating when left misdiagnosed and mistreated for a long period of time.
I fear for her life every second of the day.

Living a Neverending Story: Ruminating

Living a Neverending Story: Ruminating

My daughter was well up til November 2006 (9yrs) when she had a vomiting bug for a few days and as she was getting better, this changed to feeling well, but vomiting all solids and fluids, no matter quantity or type, in small, highly frequent partly digested manner-NO effort to the vomiting, she would feel it coming and it would pour out of her mouth.  No other signs of normal vomiting bug otherwise. Over the years, she had this happen after having any form of virus, including the flu or stomach bug.  Regular visits to the doctor and many things trialled, with only a little success from wafers but then they stopped working.

February 2011- longest period of vomiting so far-8 weeks constant, without relief.  Kinesiology   worked finally this time in stopping the vomiting.

March 2011 – referred to Specialist, who did endoscopy and said he couldn’t find anything so must be psychological.

Vomitting still occurring and no help from medical world so far, so accessed alternative therapies, which treated with crystal, channelling and kinesiology, which ended up decreasing vomiting within a few weeks. *8 weeks of vomiting.

September 2011 – bad case of the flu and as the flu got better at the end of the week, the vomiting began…and hasn’t stopped since.

She has suffered disgraceful treatment, been admitted to the mental health ward for 2months, been shadowed and had all her human rights privileges taken away (in the name of having an eating disorder) and I fought them, pleaded, called politicians, health government, head of hospitals, specialists, lawyers.  No one would help her.

Miraculously one day, I googled with the right words to bring up the clinic you speak of and found the symptoms were exactly matching to my daughters.  It was then a fight to get her GP and Paediatrician to refer her to our wonderful specialist here in Australia who recognises Rumination. With a 12mth waiting list though, we were in despair, however after viewing my daughter’s case, the specialist, Dr Frances Connor, called me direct and has supported us ever since.  The trouble now is that my daughter’s health and life has diminished so much that she is in hospital weekly for the drip and in ICU/emergency far too much.  We are not fortunate to have anywhere that provides the program for Rumination, and so have been attempting to pool together resources to make this happen for my daughter in Australia.  I despair this will ever happen and she is scheduled for a PEG (tube into her stomach to have night feeds). This is no way for her to live when I know there is a solution. 

I have since lost 2 full time jobs due to time and calls etc taken from work.  She has on the average, 2 blood tests each week (if not more), monthly stays in hospital and lately, it has been weekly. She has been poked and prodded with more than 1000 blood tests and more than 50-100 cannulas and there seems to be no end in sight for her.  She is constantly so starving that her belly aches for food.  She is so tired of being sick and tired.  Sadly, as a single mum I have no funds to do anything for her –what I pray and am putting out there, is for someone who sees this who may have the position in life to fund my daughter’s trip and treatment to the Nationwide Children's Hospital in Columbus, Ohio.  I know it’s a long shot, but I fear this is her only hope. She believes she probably won’t live to see 20 and I think she may be right.