Another week in
hospital
The last blog post was almost five months ago in October,
with a beautiful picture of Sarah-Hope looking healthy and happy. A lot has
happened since then. We went away for a
weekend with some friends mid-November and Sarah-Hope was very clingy. I
assumed it was the big crowd and was a little put out at having to host while
holding a child all weekend long but we had fun anyway. By Monday morning she
was totally pap. I wondered what virus was knocking her but nothing was
obviously wrong when the doctor examined her the next day. Later, diarrhea
started and continued in bizarre form.She seemed to be up and down and ten days
later we put her back on steroids and Neocate formula. I slowed the feeding
right down and fed her 50ml of milk or Ceralyte every hour or so but it was
agonising as we could put it in but it just came out. By the end of the weekend
I knew she was really dehydrated despite us trying to manage her fluid and milk
intake via the stomach tube and I got all our things ready as I knew she needed
to be admitted to hospital. Despite now getting IV steroids she was still pap
for another four days (her third birthday included). She underwent a number of
tests with no bugs / viruses / allergies coming up. This led the paediatrician
to consider whether the diarrhea wasn’t rather triggered by something related
to the immune system, perhaps an autoimmune condition such as Crohn’s disease.
Her faecal calprotectin levels were ‘impressively high’ (>600, when <50
is the norm) meaning that her gut was significantly inflamed. Sarah-Hope was
started on a formula called Modulen IBD (which is for Crohn’s disease) which is
used to treat inflammation in the bowel. It seemed like quite a risk at the
time but if it didn’t work she was going to have to have total gut rest with IV
feeding as she was showing no signs of improvement. Thankfully the Modulen
worked and we were able to leave hospital three days later. She had bounced
back, her appetite increasing and behaviour typically difficult after having
steroids pumped into her. The feeding was very time consuming (having to feed
her 10ml of milk every 10 minutes!) but we were so exhausted from that week in
hospital that we were keen to get home no matter what we needed to do!
Sarah-Hope was also desperate to get out of hospital and the day we got out
instructed us to take her out to the park, to her Oupa’s house, into the
swimming pool… she was on a rampage and ready to recover! Two days later we had
a belated birthday party for her and she seemed in good form.
Two months to recover
We were grateful that the Modulen trial seemed to be
working, but that came with a whole lot of other concerns. Before, whenever
Sarah-Hope had been sick we would lock down for a little while and then re-emerge
ready to get on with our lives. But what did it mean if you had an autoimmune
condition? Something which could flare up at any time? What are one’s
expectations of health in that situation? Can you actually make plans for your
life if your health is this fragile? Although the formula for Crohn’s disease
was working for her, did this mean that she actually had Crohn’s disease - and
if she did what did this mean for her and us as a family? Not knowing exactly
what was causing her gut issues was quite unempowering.
As Sarah-Hope settled back home, feeding got more and more
difficult. She was now off steroids but very emotional. She would shout at me,
“I DON’T WANT FOOD!” Mealtimes were really tricky. I used to prepare meals
ahead of time but I just had to be available to find out what she wanted and
cook it for her in that moment. The choices she made were generally starchy and
plain, what you might expect someone with a sore tummy to choose to eat. One
day it would be a kilogram of marrows, the next day pumpkin, the next day five
bowls of oats, the next day pasta. I took her into the shops and asked her what
she wanted (unheard of in our family!) and then just hoped that she would
remember her options.
Libby followed suit. She demanded to stay in her pyjamas.
She said she didn’t want to eat. She also wanted to be held and carried
everywhere. In the next two months I took her to the doctor twice to get her
checked out as she was also being very demanding but apart from some iron
replacement meds it just seemed to be attention seeking. It startled me how
affected she was by Sarah-Hope’s health and behaviour now that she was 22
months old (she was 14 months old when Sarah-Hope spent three weeks in hospital
earlier in the year but she seemed far less aware of what was going on then).
We went on holiday late. We came home early. It was far too
stressful dealing with this in a group setting and disturbing everyone else’s
peace. There were maybe a handful of moments where the kids relaxed and played.
It got slightly better such that we braved having one parent on two children
and letting the other get some rest or fun time. But it didn’t seem worth using
leave for a time when the kids were such hard work! We hoped that by Easter we
could have a holiday and they would be well enough so that we could all have
some rest!
Because it took so long for Sarah-Hope’s gut to recover, it was
difficult to know whether she was getting better or not. She did have a scope
(on Libby’s birthday) but that didn’t come back with too many answers. A
gastroenterologist looked at the results along with other reports and has
suggested further testing that could be done should her gut flare up again. I
think most of these tests are for rare immune system related causes of
diarrhea. On the positive side, the gastroenterologist didn’t think that
Sarah-Hope had Crohn’s disease based on the info at the time but said she could
be given the generalised diagnosis of inflammatory bowel disease.
As her gut has improved, we have slowly weaned her off
modulen. This is now the first time that she isn’t getting milk formula through
her stomach tube. It is amazing to see how much she is eating now that she
isn’t getting any milk! Her appetite and energy are unrecognisable. I wouldn’t
have known any different last year, and she wouldn’t have been able to describe
it for me (which is why the emotions and tantrums re food were so difficult)…
but seeing Sarah-Hope just suddenly decide that she wants to crawl (yes,
crawl!!) and walk up the stairs by herself multiple times in the day is
incredible – the energy but also the independent moves! What a relief. I was
feeling so tied down with carrying and lifting two girls all day long but can
see that this will change slowly. Sarah-Hope is now into climbing… in the car,
onto the couch… she wants to do it all. It means as she’s doing more herself I
am able to do less for her (and some other things for her instead)… hooray!
This coupled with Libby turning two, and the communication between the little
sisters radically improving… they are talking to each other and playing,
laughing, arguing etc… I am no longer the only centre… they relate and that has
released me slightly.
Parental tears and perspective
I have no hesitation saying that
the three months with Sarah-Hope’s inflamed gut were the most difficult months
I’ve experienced as a mother. As the paediatrician was putting in Sarah-Hope’s
drip, she was shouting and crying “Take it out, I don’t want it, Doctor Paul, I
don’t want it!” If I had had the space to have a tantrum about inflammatory
bowel disease (IBD), I can assure you I would have screamed “I DON’T WANT
THIS!” and run a mile! I have found it interesting comparing the more recent
process of diagnosis of IBD to three years ago when Sarah-Hope’s underlying
condition of TAR syndrome was diagnosed after birth. Back then, what seemed
really important was acceptance – accepting that even though all the odds were
stacked against her, God had clearly given Sarah-Hope life. Even if she was
differently abled, we were to accept her as He accepts us. Because of the
dramatic circumstances around her birth, it was so clear to us that God had
ordained for her to live and we were confident that He had a purpose for her
life, which it was a privilege to be a part of. But, I have found accepting
Sarah-Hope’s diagnosis of IBD far more difficult. You can be differently abled
and full of life – but IBD robs you of life. It is described as being lifelong,
debilitating and painful. And the effects of it are challenging socially, which
robs us of our very support systems and the joy we find in our relationships.
It feels like a spiritual battle. And I have to remind myself of how I was
tempted to feel intimidated about all the possible outcomes while pregnant with
Sarah-Hope – yet we mercifully escaped many of the potential scenarios, some we
faced for a short while and overcame by God’s grace, and others we have grown
into living with. And so while I shouldn’t be in denial about the realities of
Sarah-Hope facing chronic illness, I shouldn’t presume what that will look like
either. I have been gaining greater eternal perspective – appreciating the reality
that as Christians the goal of this life is not one of comfort, but of training
and preparation for the next. We really shouldn’t be surprised when we face
difficult times (or presume that we’ve been through enough and so we are immune
from further challenges!) – but rather joyfully anticipate heaven, where there
will be no more tears or suffering. As Rob Parsons quotes, ‘there are other
worlds to sing in’. How beautiful is our Hope!
What was really good about those
months of IBD is that it really brought me to my end. It was the first time
I’ve admitted “this is difficult”. It
made me realise how much I need to lament before God and process my feelings
about what is going on. I am a planner and prefer to get on with believing what
is true and doing what needs to be done – but I am learning that I need to set
apart time to acknowledge and process my emotions. If I don’t, my emotions
begin to drive me and I can be tempted to feel overwhelmed or sorry for myself
and numerous other undesirable behaviours! I am slowly experiencing a shift
from living in a type of survival mode which really relies on my resources to
manage my situation to a life of faith in God and His provision for every
moment. I have felt the resultant shift to spiritually thriving. My kids needed
me so much during those months and were in my arms continually – and that
taught me to use every free minute, be present today and be grateful for the
smallest things (such as being healthy enough to have the energy to go a park
together), to find rest in God and not my circumstances, to know the life and
love of Christ as my life is given to others. What a joy it is to live in daily
trusting dependence on God... as unnatural as it is!
No comments:
Post a Comment