THERE IS NEWS ON NATALIE AND GRAHAM - SCROLL DOWN TO READ
** N A T A L I E **
Thank you to everyone for sending good wishes and healing for Natalie.
Please keep sending for as long as you feel able.
I am certain that it has been of great help and that she would
not have survived this far without those efforts.
UPDATE 02-06-2010
Sorry that it has been so long since the previous update - not only were we very occupied
with everything that needed to be done for Natalie and myself, but our computer broke.
We went to London on the 1st of March for Natalie to have an operation, though by the
date set for the operation, the lymph fluid problem appeared to have corrected itself.
The operation was cancelled and the time in England was used to convert all
of her medication from IV (direct into blood stream) to Oral (by mouth).
They were also able to change her IV feed to a tube down her nose/throat into her stomach,
as it seemed that her digestive sytem was functioning, though not at full capacity
This change to oral medication and feed meant that a short time after arriving back in
Denmark, she was discharged from hospital (so we are now living back at home), though
she has to make the long journey to hospital every other day to have dialysis.
Recently a PEG tube was fitted, this is a pipe that goes through a hole in her abdomen
directly into the stomach - it permits liquid food to be pumped directly into the stomach.
This is needed because she will not be able to eat enough to sustain her life,
which is a common problem for children without kidneys to have.
We had a scare for the past couple of weeks because the lymph fluid problem
appeared to have started again, she was scheduled for a small operation to drain
the fluid yesterday - but it once again seemed to be reducing so the proceedure
has been posponed (sometimes the draining process can make things worse).
She is still a very sick little girl, but at least she seems reasonably stable at the
moment and she definately has a quality of life. She laughs and smiles a lot!
We have been told that, due to the original operation, she will not be able to have the
standard childrens transplant operation - this is because in children the new kidney is
connected driectly to the Aorta (hers is a plastic tube and so they cannot).
She will need the adult version of the operation, which connects the kidney to the
artery in the leg(s) - to have this she must attain a weight of at least 12kg.
This may take some time as her growth rate is reduced because of the kidney problem.
So it could be two years before she is able to be considered for transplant and, through
all of that time, will need to travel between our home and Rigshospital in Copenhagen
at least every other day - and perhaps more if there are any other treatments needed.
This will be a great physical strain on her and us, currently Mie has to do all of the
travelling because my health is still too poor to withstand such stresses.
We are also fighting hard to keep life as normal as possible for our other daughter
Emily, as we do not want her to loose out on things due to her sisters illness.
May all of our spirits be strong enough to sustain us through the darkness and into the light.
27-01-2010
The hospital in London has agreed to take her back, though they do not have space
until the end of February - please keep sending your loving healing thoughts!
She is still critical having no working kidney, no working digestive system* and a few smaller problems.
As the doctors now state that her progress/recovery might be measured in years...
I hope you will understand that we will discontinue bulletins until there is something major to report.
*Yipee, we are only weeks away from Christmas and we have had a present already - Natalie's digestive system is showing
good signs of starting to work. Things are still very much up and down though we are remaining optimistic about her future!
mid jan 2010
Sadly, our little bit of Joy (see above) was short lived....
What was thought to be a smaller problem turned out to be a serious failure
within her Lymph system, which was probably damaged during the original surgery.
The doctors have tried starving her for ca. 4 weeks (which sometimes reduces these
types of failure). That has not worked and docotors in Denmark do not know what to try
next. So, we are now waiting for a reply from the hospital in London to see if they will
take her back for investigation and probably for more surgery.
She produces ca. 200 ml of lymph fluid directly into her abdominal cavity every day
(which has to be physicaly drained through a tube on a regular basis).
This is a very serious problem which stops any chance of a kidney transplant,
unless it can be fixed.
**
G R A H A M **
Due to the above situation with
my daughter and the extensive problems with my own health, it is now
uncertain at what date I will be able to start working again. I will
naturally update this website regarding this situation - so please keep
checking .
2nd June 2010
