Advance Care Plan

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.

Goodnight Eva

So upset to read this from a talented fellow blogger. A beautiful child and most dedicated and loving mother.

“Life is fragile. We’re not guaranteed a tomorrow so give it everything you’ve got.” Tim Cook.

Downhill, fast.

Things went downhill, and fast. Since my last blog post everything was ticking along quite smoothly. Thomas was enjoying his paddling pool, was getting pretty interactive and his therapy sessions were going really well. He had been having a tough time with 4 top teeth coming through but once they had broken through, he still seemed not quite himself. He began having the odd seizure and seemed more irritable throughout the day. We made contact with his neurologist who then doubled his seizure medication. The seizures seemed to ease off but Thomas did not settle within himself.

Thomas has always had involuntary muscle contractions but they seemed more pronounced and often. His involuntary movements include his neck repeatedly twisting to the right, his jaw clamps shut and his arms and legs stiffen and he sometimes holds his breath for 1-2 seconds during these episodes. He would do this during breastfeeding and it wasn’t that he was going through a biting phase, it was involuntary. He would be latched, suckling away and then, without warning, his body would tighten and yes, his jaw would clamp shut tightly. I persisted for a while through this and every time I breastfed, I was extremely nervous and kept my finger on the ready. In the end, it got to the point where he was not getting a decent feed because he kept clamping so much which led to our first hospital stay for dehydration.

Thomas miraculously took to the bottle that night in hospital so we were discharged the next day due to this. Now I realise that he was desperate and that bottle feeding long term was a difficult, tiring act for Thomas. He only lasted less than two days getting sufficient fluid from a bottle and became irritable again refusing solids, bottle, and cup. I knew we only had one option left. I really didn’t want it and I wasn’t ready either. But we had no choice in the end.

We were then admitted again a week later. This time for dehydration and a ‘plan’ to address the lack of options for getting fluid into Thomas. The plan was to have Thomas get an NG (nasal gastric) tube put in. This was purely for fluids if he refused cup or bottle. We were still feeding him puréed solids and the yummy tasting medicines orally. In order to be discharged from hospital I was required to observe x amount of feeds and be observed for x amount of feeds as well as give x amount of feeds independently with no supervision. Turns out it is quite easy to do. Changing the plaster on his face to hold the tube in place is not easy. The fear of him pulling it out by accident  will never go away. The NG tube is a short term plan until Thomas gets a G Tube which requires surgery. This will no doubt happen within the next 6 months. 

Since this discharge Thomas seems to have got worse. He has been having the odd seizure, and loads of dystonia episodes. For the last few weeks, it has been really rough. He has been crying or screaming most of the day. Hence why I haven’t written in a loonnnnggg time. I have been putting updates on his Facebook page but it has occurred to me that I haven’t on the blog. With all the crying and screaming, Thomas stopped showing interest in his sensory room or play in general, he was waking in the night stiffening and only wanted to be held. We grew desperate waiting to hear back from the Neurologist who is a very busy lady understandably, so, we went to the GP. She was fantastic! She got on the phone straight to the neurologist with the okay to start a new medicine. It is a strong muscle relaxant, Baclofen. He has been on it for over a week now and it does seem that he is having less dystonic episodes. However, he is still crying and screaming in pain. I believe it is constipation, with his low muscle tone, he struggles to move his bowels. He will spend a whole day pushing and nothing comes out. I really feel for him. I know he is in a great deal of discomfort and pain so I am giving him Pamol and Lactulose and lots of fluids. We are seeing his Pediatrician tomorrow to hopefully look at a stronger medicine to treat the chronic constipation.

I really hope that we are able to find out what it is for sure that is causing Thomas so much pain (even though I think I know, it is not confirmed!). I just want my boy to be comfortable and happy again.

Wordless Wednesday