Advance Care Plan | Minding Thomas

I am thankful to everyone who reads my blog that has offered kind thoughts, love and support. I know that the blog is an important tool for keeping family and friends informed and to connect with people from around the world who are either years ahead in the unique experience of raising a child with complex needs or maybe only recently introduced to it. I am no expert on every child, only my own son.

I really wasn’t sure whether to write about such a sad, and sensitive, and private part of our journey re: the Advance Care Plan post, but I feel it is important to share so to educate and make people aware of all facets of our journey. I wrote the post so to share my feelings on the matter.

Because Thomas has been unwell for the last month or more, and with winter coming up, it would be an appropriate time, the Pediatrician felt, for us to discuss an Advance Care Plan should Thomas’ health deteriorate.

Currently Thomas is on the mend. He has recently started a new medication to treat his chronic constipation and consequently faecal impaction, with Movicol. He is on a week of increased dosage to flush everything out. He was very blocked up! To the point that the Pediatrician could feel it upon physical examination and when examined, Thomas’ dystonic episodes occurred which now tells us that his dystonia was fuelled by the pain and discomfort of the constipation. We are now on day 2 of 7 of the flush and it is definitely working!!!! Because of this Thomas has really bounced back to himself, mostly, which includes playing in his sensory room more often, sleeping more, eating without dystonic episodes and chattier and smilier. We are so relieved and happy to see him getting back to himself again. I understand now that he must have been in a great deal of pain for quite some time.

Although Thomas is on the mend, we did have a little scare last night where we spent many hours in ED. All is well now. He had an NG feed and had a little vomit afterwards. He seemed to be choking a little bit. He had laboured breathing and seemed more limp than the usual. I was advised to take his NG tube out because I was not able to aspirate from his tummy and to take him to ED to have a new one put in as well as check his chest for aspirated fluids. He had an X-ray which came back fine. A new, much longer NG tube was put in and Thomas needed to be monitored for an NG feed. He seemed fine, although distressed by the other crying children and poking and prodding which infuriated his dystonia! We think the reason we were not able to aspirate fluid from his tummy, is because the tube must have been slightly dislodged from the vomiting. I was only drawing air out even though he’d just been fed. In theory I should have been able to draw out a little of what he just ate.

Sorry if this is too much info! It is a bit yicky sounding but it is part of our feeding routine. The reason for drawing a little fluid from the tummy is to always check the NG tube is in the correct place in the tummy. Once fluid is drawn from a syringe from an opening of the tube, you then squirt a little onto a pH testing paper that tells you if it is okay to go ahead and feed or not. The photo where I am holding an end is the end that sits in the tummy. If you have any questions or want to learn more about it please feel free to ask. I am comfortable talking about it. The goal now is to teach other family members who are keen to learn how.

Tell me…have you ever heard the words Advance Care Plan? Did this Advance Care Plan have anything to do with your child?

I would gather that there is a minority of people out there who can answer yes….and then yes again.

I just found out yesterday that I am one of those people who know what these words mean and that they apply to my child, Thomas.

I was not quite expecting to meet with these words.

It was a shock. Still is. It is yet another thing that I wish I never knew of. A sad thing although yes, intentionally meant to be a positive way to plan for my child’s end of life.

Yes, you read that correctly. End of life. Not a nice thing to read is it? Not hard to imagine now why I’m in shock.

According to the New Zealand Advance Care Plan website, it says, “Advance care planning gives everyone a chance to say what’s important to them. It helps people understand what the future might hold and to say what treatment they would and would not want. It helps people, their families and their healthcare teams plan for future and end of life care.

This makes it much easier for families and healthcare providers to know what the person would want – particularly if they can no longer speak for themselves.”

Because, realistically, Thomas may never be able to speak for himself. So it is my husband and I who will decide these things for Thomas. That’s understandable. Also, the Pediatrician mentioned that Thomas is at higher risk especially if he develops an infection of some kind. This is true too.

Would any of this make me feel any more prepared for planning for something like this? Not really, no.

Simply because it would be easier to avoid the truth because the truth is hard to face in situations like discussing your child’s end of life plan. I don’t think any parent would want this for their child. The thought of it alone leaves me with a giant lump in my throat.

Now my husband and I will soon be working towards having a 1 – 2 hour in depth discussion with a doctor and set a plan in place. A meeting where we will learn new terminology and medications and medical techniques in end of life situations.

It cannot be avoided. I will face this the same way I face everything. Well informed, plenty of questions and I will always behave the same way I always do, with a numb and unreadable stony face.