Thursday, August 23

Stop Start

After a week of feeling on tenterhooks, this week draws to a close feeling a little....well I can't put my finger on it. Even without the scheduled PEG insertion, we had a full diary including a repeat video fluoroscopy and development review.

Monday afternoon, we trundled up to our favourite place (hospital) to have a review with the respiratory SHO to confirm whether or not the scheduled operation to insert a feeding tube and perform a respiratory and endoscopic review, would go ahead as planned. We had had no infections, no hiccups, and Wriggles was so full of beans since getting home she would not sit still for a minute. The consultant was delighted and flabbergasted at her immediate recovery as she tried to empty the nurses' trolley, and went off to tell the anaesthetist the good news. The anaesthetist had news of his own. And a mind of his own. He apologised but was not happy to go ahead as planned. Her chest may be (relatively) as clear as a bell and her energy levels enough for an Olympic team of athletes, but it had only been a week of no oxygen requirements and technically she could still be carrying the final dregs of infections. Sorry, but this week a PEG had to wait or he felt we would be having a reunion even if brief, with the staff on PICU on unpleasant terms. I don't regret his decision; I trust his skill and knowledge. It just felt a little deflating after mentally gearing up, packing a little hospital bag, trying to explain to Wriggles about nose-wiggly-worms and tummy-taps. 

It is now rescheduled for next week on the understanding that the whole thing may be cancelled again.

Tuesday morning, we had our first alarm-clock call since hospital for a repeat fluoroscopy. Wriggles had one last October which appeared clear, that dismantled plans laid 9 months previous for NG feeding prior to a PEG placement, that have now of course come up again and stayed. Barium, a radioactive substance, is added to fluids and food to show the swallow process in a moving X-Ray captured on film to be able to slow down and enlarge to get an accurate and in-depth picture. I packed a little tub of Quavers, a fromage frais and a bottle of milk. Wriggles had been nil by mouth for three weeks-surely this would be an exciting moment for her, albeit confusing? No. It was like the early days of her oral aversion again. She shrank away, clamped her mouth and cried in fear, confusion and revulsion. She held her arms out and shook her head. No amount of cajoling did anything. The girl was not drinking or eating. Apart from one Quaver with barely any barium on. Results: inconclusive. Apart from that everyone is now quite clear that feeding has been very complicated.

Today, was our development review that had been arranged for months. It was the appointment I was most relaxed about. As we have community and out-patient support that is ongoing and a fantastic and open team, I thought I was fairly clued up, at peace and relaxed. Important lesson: you don't know really how you feel about something until you hear it from a consultant. Much of the review was positive and complimentary. Funny how they are never the bits you take away. The bits that stay with me and linger in my mind and that will not go away are: 

Wriggles' developmental age is put at 14 months (she is 2 in three weeks, 21 months corrected).
That possible Cerebal Palsy diagnosis is becoming far more real and much more likely. It is not prevalent enough to diagnose here and now, but she is showing enough things to lead them to suspect it is present in a mild form, affecting three limbs.
Of course, both things are very black and white and there is so much in between. The development age does not take into account the various different areas and groups of skills, some of which she displays at a higher level. It doesn't take into account HER and her funny ways, her brilliant smile, her love of colouring, her new game of cuddling everything and her mad laugh which sounds like a manic sheep. It doesn't acknowledge in a breath her history, her bravery, her brilliance, her is just a number. But it is a number that hurts, which is silly because it changes nothing and it is a snapshot of where she is now. She is not so affected that it is forever or for the next year, and even if it was, it means so little compared to the way she lights everything up.
And the CP thing. It's something that has been floating around as a possibility in varying degrees for ages; over a year. Just until recently, it could have been something that might have been a phase, something that might resolve. The muscle tone and core reflexes, which are the giveaways in our case, are showing less sign of going now. We have been working our way through things to help, some which are, but it is becoming apparent that they lessen symptoms for time periods, not resolve the central issue like was hoped initially. Partly, the issue has been partly masked by her amazing progress which has so delighted both me, family and the medical team she knows. She has achieved so much that it really is by the way. Our consultant has put us on the waiting list for an MRI and the plan for now is to press on with physio work. Both legs and her left arm have spasticity; her left leg more pronounced than her arm and right leg which are mild and unless you were a doctor with a keen eye and a tappy-stick, you would be none the wiser.

And so the waiting game goes on. Stop start stop start. Questions followed by answers, but not always the right ones. Followed by more questions. Some said out loud, many debated internally. Who knew it was possible to feel so proud yet so sad and confused.


  1. For some reason we have never had a development review. Joseph had consultant input and health visitor and the occasional dumb thing said, but we never got a number, and I think now looking back, I am quite glad of that.

    You are an amazing mummy, and Wriggles is an amazing baby.

    I hope she can have the PEG soon, and you can get it out of the way.

  2. I'm just catching up on your blog Amy (I haven't had much time for reading this week) and I'm so sorry to hear you've been having such a challenging time with Wriggles, so full of highs and lows. I hadn't realized she had a possible CP diagnosis lurking about, but if anything it makes me feel even more amazed at how strong you are. To be launched into motherhood so unexpectedly and then to be so incredibly devoted to Wriggles with all her challenges and joys is just awe-inspiring. Keep going hunny, you are amazing and Wriggles is so blessed to have you!

  3. Honestly Amy I sit here and I struggle to find the words to comment on this post.I am in absolute awe of what a brilliant Mum you are.
    Cast in to single parent hood as you were, not to mention recent challenges... You give that child EVERYTHING you have to give. Now find me a label to cover that and it's yours!!