In the past few months I’ve entered new territory in the ever-changing journey of caring for Kate. As her mitochondrial disease evolves, change in her condition is expected and some say inevitable. And the change is not positive, it is thought to be degenerative in a progressive way. Those are hard words for a mom to hear. They are even harder to absorb and truly understand. What makes the words more tangible is when the change involves change in Kate’s care and her routine, and that is what we have experienced in the last few months. It is not change that you would typically expect with a growing and developing child, the change that comes with parenting a ‘typical’ kid. It is the change you worry about, hope doesn’t happen, wish you didn’t have to cope with, co-ordinate or assimilate into your life as a caregiver, ‘nurse’, and complex care coordinator.
Kate has weighed about 15kg since January 2012, give or take. She hasn’t grown much in height either. She is tiny, and by measurable medical standards she is below the 5th percentile in growth – if she even makes it onto the growth charts. The fact that Kate is tiny and undersized for her age is not lost on anyone, but it has not been the front and centre medical concern with so many other competing and more pressing issues to address. Kids can be small and ‘slip off’ the growth charts, but when your child is living with a chronic disease and suffers from frequent acute illness, weight/height/size and growth do matter. This past spring, with constant ups and downs with her mitochondrial disease, her ‘failure to thrive’ became more of a point of discussion, prompted by me asking the team ‘what can we do’. Those four words caused a flurry of excitement and activity. Kate’s complex care team jumped at the opportunity to engage me in considering this intervention for Kate. Her medical team had discussed with us options for enteral feeding for Kate before – but neither Brian and I were comfortable taking that next steps, and I now realize Kate’s medical team was waiting for us to be ready (and hoping we would be before they needed to strongly recommend that direction). Before we could step back from the conversation, a nasal-gastric (NG) tube was planned, equipment was ordered, and training was organized for us. I didn’t have time to backtrack of second guess – I think they’ve learned to act fast with me. So here we are now, 4 months later, and the use of the NG has become part of our daily routine (3x / day). It has become so second nature that we can do it at the park, we travel with it, we teach others to do it (as needed), even Kate gets involved in flushing her NG tube and helping with the delivery of medications (very messy).
And the result? Kate weighed in at 16.2 kg this week. The heaviest she has ever been. She has also gained in height. She is growing.
Happy Mom Face!
On Monday, another change. For the first time ever, I poked Kate.
Unhappy Mom Face.
A child like Kate endures at least 100 pokes a year (an estimate by our complex care doctor). Nurses, phlebotomists, veinous access team, ED staff – all take stabs at her. I often marvel at that particular job in the hospital. Of all the paediatric medical jobs there are, poking kids all day long – day after day – has got to be the least rewarding. Who goes to school to study that? Really? (I have the upmost respect for them, and I adore the ‘go to’ members of this team who are the ‘vein whisperers’ and can get that IV in on the first poke). When Kate sees the ‘blood cart’ she knows exactly what is going to happen, and because of the difficult access to her veins as a result of too many pokes over so many years, and the resulting scaring, she can’t use the ‘freeze creams/sprays’ that are offered and can help distract from the whole process and minimize the pain.
Kate has needed to start on immunogloblulin treatments because her compromised immune system is slowly deteriorating and is in need of support (insert another sad mom face). Typically immunogloblulins (IG) are given via IV (intravenous) once a month in hospital. Unfortunately for Kate, the amount of IG that must be given intravenously was too much for her system to handle and caused an inflammatory cascade, or a triggering of one of her ‘episodes’. The option the Infectious Disease team (who take care of this aspect of her medical management) turned to was the recent development of sub-cutaneous delivery of IG (SQIG). SQIG is a weekly infusion of IG that can be done at home – after the parent (mom/me) knows what the hell they are doing and get over their ‘fear factor’ of needles. Seriously – I am terrified of needles, but surprisingly I seem ok giving them to someone else. Phew.
So this is what we have landed on for Kate in the latest chapter of life with this disease. An immune system that is failing. The need for a lifetime, weekly, blood product to keep her going – to keep SIFD at bay. And so this new level of caring for Kate, where I am now injecting her weekly with immunogloblulin. I am the one doing the poking.
Fortunately, when I poke Kate, the injection is SQ (sub cutaneous) – just under the skin – and I can freeze her. This has made all the difference and Kate is very co-operative – even helpful (too helpful) – with the process. Still the task feels daunting and I still have 2 more infusion sessions to go with our nurse guiding me before I am sent home to do it on my own. I hate the learning curve. I hate feeling worried that I will do something wrong and hurt her. I know the confidence will come, and that at some point I’ll be quite cavalier about the entire thing – amazing friends and family with my needle wielding skill. But right now I feel overwhelmed, a little intimidated and a little scared. I don’t want this. It makes me sad. I don’t want this change, this evolution in her care in her disease. I just want to be her mom and go to the park. I want to find that ‘normal’ place, that consistent place where life is just a little more predictable for us and for Kate. Everything I am being told about this disease is that this is not possible, that the unpredictability is what we can continue to expect and have to manage.
I wonder what is next?