This is a blog I wrote in the midst of it all. I feel to tell you all before you read this that he has not been diagnosed with the Pompe’s disease that I worry about in this blog. I was going to remove this blog for that reason but decided against it as it was apart of our journey and I know some of the mothers reading will relate to uncertainty.
After the heart diagnosis (if you can call it that when they’re searching for a cause) on the 10th November, the more days that passed since I saw the specialist cardiologist, the more nervous I got to take him home. I didn’t want to at all. I wanted him here until the results of the test, it just didn’t feel right. Over the weekend, things slowly sunk in and questions started to fill my mind. Why could we go home? How was there nothing they could do? Am I supposed to sit and wait? How can I take him home not knowing if he’s going to die or not? Was he going to be okay? Was he going to die? Nobody knew the answers. I’d grown very close to a few nurses, the main one shared my concerns and didn’t understand either. Funnily enough she had been in the room with the specialist and had accepted it as I had but now had questions like I had too.
The following Tuesday me and his dad got basic life support training before waiting on his vaccinations (he hadn’t yet had any vaccinations and now had to have them in hospital in case the shock was too much for him) before the anticipated discharge.
After many weeks in and out of hospital (mainly in), I’m finally struggling. This news (I just heard the words no new mother should ever hear..) is more than anything I’ve had to process before.
Then he started coughing, they took a sample from his nose which confirmed he had bronchitis. The next few days were scary and stressful. He wasn’t a normal baby with bronchitis. He was a baby with a large heart that needed him to be full up all the time to ensure he had the volume his heart needed to not be under strain. But now his lungs needed him to not have a full stomach pushing on his diaphragm making it harder than it already was for him to breathe. After all his illnesses, all the problems he’s had with different organs, this common childhood chest infection had him looking so unwell with oxygen and a continuous feed through a tube. Coughing and spluttering and wearing himself out trying to breathe.
So in the past week and a half, I’ve gone through a few different phases. Here’s the significant bits:
I’ve cried more. Despite having slept on a camper bed in a hospital room next to his cot for almost 3 months. Watching him get prodded and poked and having more tests and investigations than any 90-year-old I’ve ever nursed. This news was different. I’d worried about his health since he was born, but now I worried for his life. That being said, whilst I cried more, it was heavy in small doses, maybe 3 or 4 times over the past 10 days for 5 minutes a time. I allowed my mind to feel fear and sadness for those moments only. Or sometimes they just crashed down on me, it wasn’t a choice. But I soon caught myself – all I had to do was look at his cot and think “stop it, he needs you strong”, and I was back. The rest of the time it was my brain ruling the roost. You could say my heart was the mother in me and my brain was the nurse in me. The nurse in me was looking after the mum in me and Jaxon.
I’ve been taught to nurse, I’ve been taught to understand autonomy and physiology, I’ve worked on wards and liaise with doctors. I knew no one could say anything without results. But I couldn’t stop asking. I asked their opinions, I asked their thoughts, I asked their experience, I asked their advise. But no one could tell me what was going to happen. No one knew. And I didn’t know whether knowing or not knowing was worse. I was planning for the worst, preparing myself, talking as if the worst was inevitable.
A lot of people asked how nursing has affected the experience and I have written a separate blog on this.
Then, after a late night “moment” I told a close friend about his heart and she travelled to see us. Whilst she was here another cardiologist came to see me, I’d heard him mentioned a lot. This was a very strange experience…
I asked him what I had to ask, and he answered but rather than leave as the conversation appeared to be over he stood staring at Jaxon in my friends arms. Each time this happened I thought of another question . It had been a week so, I’d done my research and I’d asked around and I knew they were testing him for a rare condition called Pompe’s Disease. It hadn’t caught my attention at first but after the 3rd or 4th doctor mentioned this disease I’d started researching it (Click here for more information on Pompe’s Disease). I asked the Doctor if he thought that was what Jaxon has (I assured him I wouldn’t hold it against him, I just wanted his opinion – you see what I mean by my questions). He said yes. I told him I agreed, I’d looked it up and he matched up with every symptom. It was like fitting a jigsaw puzzle together. He stood again looking down at Jaxon with sorrow. Another question, have you seen this before, with the heart? “Yes” again. Pompe’s disease, have you seen that before? “Yes” again. This surprised me as it was so rare no doctor I’d spoken to yet had come across it. It explained why he was more open to my questions. So I told him I’d originally seen that babies don’t live past their 1st birthday with it, but that I’d spoken to other people now who had told me about this enzyme replacement therapy and that it was treatable. He was very careful now. He explained that he had indeed referred patients to the metabolic team for Pompe’s Disease to receive enzyme replacement therapy, but that it was not a cure and the outcome was not good, not how I clearly thought it was. This explained the lingering, and the look of sorrow.
He left and I turned to my friend whose face told me she got the same message that i did. “It’s not looking good is it?” I asked her. “No” she said as tears ran down her cheeks and she reached her arm out to me. I couldn’t cry. How strange.
So my brain is in full control. Nurse Kaytee. For the past week I’d been researching Pompe’s and I had seen the life expectancy of one year but I couldn’t find any research on the enzyme replacement therapy treatment and now the doctor had given me a good idea of why and what we were looking at. This wasn’t bad (it was bad, I was just trying to cope with it. I think the following ideas were a mix of a distraction and hope for creating happy memories with Jaxon). This gave me ideas. If I’ve got a year with him, I don’t want him here in hospital, I don’t want him repeatedly pricked for bloods and examined head-to-toe and prodded and poked. I want to take him away. I want to get his tiny little footprints in the sand, I want him to feel the sea on his body, I want to dance with him in the warm rain, I want him to see the sun shine and feel it on his face, I want him to see all the colours of summer and feel the fur of different animals. I wanted to make his short life the best life.
And so that was it, I’m on Facebook asking if any of my friends have relatives in different countries, I’m googling different charities trying to find out what options are available. I was surprised; most of the children’s charities I had heard of were for 3 or 4 year olds and above. Then I’m looking at health insurance; if they are terminally ill the return date must be more than 6 months before the length of the terminal prognosis. Then I’m wondering why no charities take young babies away. Could this all fall apart? What on earth am I trying to plan? Are we going to end up stuck in hospital? Where can we go?
I can’t see him uncomfortable, is this realistic?
Seeing him on oxygen struck a chord. What if he couldn’t come off it? What if with this disease he needed oxygen to be comfortable? What it caused him pain? I can’t take him away like that. I can’t take him away if he’s struggling.
I’m always tired with a headache.
Please comment with your thoughts and opinions reading this. Your feedback is what keeps me posting and writing is proving to be a helpful therapy for me right now. A therapy I wouldn’t be indulging in without your interest.