Friday, 24 January 2014

It's Friday night. Yesterday was Jayden's MRI and tomorrow is my birthday. So very grateful that so far we have been told that his MRI appears good. However we have to wait until Wednesday for the full report.
I'm so very grateful I can be celebrating my birthday knowing that he's ok. I wish I knew he was going to be ok forever but I have learnt to be grateful for 'for now'. That today he's ok and when I blow my candles out I will be wishing like I do everyday, that my little man gets to grow old with his siblings. I so wish for that to come true.

MRI day

We woke Thursday morning organised and ready to go. We have done this enough times to know what to pack and where to go. Jayden is use to having to fast and we only need to tell him the night before that he can't have any food or water when he wakes up and he doesn't ask for either the whole time. Amazing really.

This time he was really upset when we were leaving. He didn't want to go. Cried to stay home. When we finally got him in the car the kids said goodbye and he cried his eyes out for them both. Especially Layla. We are most definitely taking her next time.
These school holidays have bought them together so close that most days they are inseparable. He just loves her and she him.

When we got there he cried to not go in. But when we finally arrived inside he was ok to play on the car in the waiting room until we were called in to see the nurse. He wasn't happy to be weighed and have his blood pressure taken by her and kept asking to go home. Back out into the waiting room. He usually has a pre med but the nurse forgot to tell the Anesthetist so by the time they called us back in it was too late for him to have it.

That really worried us. Jayden doesn't get a canular put in first as it's now so difficult to find a vein so they put the mask on first (the gas). He still gets stressed but with a pre Med it seems to take the edge off.

Without it he was not relaxed at all. I took him in to the room, sat on the chair with him on my lap next to the bed he would be laying on for the MRI. The anesthetist leaned over and placed the mask on his face. He panicked, was very upset and I had to hold him tight as the mask was held on his face. He cried and screamed for it to be taken off. That same fear in his eyes and eventually he falls asleep. I help them lay him onto the table, kiss him, and walk away. This never ever gets easy. Never. And he has done this a LOT of times. Never ever does it get easy. I feel so traumatised by all of this. I know he is. Even writing it down and reliving it in my head is shocking. I hate it all.

I walked out to meet danny who was equally as shaken as I, as he could hear Jayden crying from the next room where he was waiting for me. We both walked in silence for a while before either of us spoke. Trying to come to terms with every minute of every thing about this journey is hard. Never ever, easy.

An hour later and we were called back in as Jayden was out and in recovery. Still asleep,but out of the MRI.
Rewind as I missed a bit. When we arrived in the morning we were told Jayden had an appointment at 1pm after his MRI for tests in another section of the hospital. This was the first time we heard about it and weren't ready in our heads to stick around any longer than we had to and we know when Jayden wakes that there's no way he will want too either. We did know he was getting bloods done while he was out but didn't know about afterwards. Anyway we cancelled it, we just couldn't get our heads around it. while we were waiting for Jayden to come out of his MRI endocrinology phoned to say that they thought we should do the test and would try and tee it up with the recovery nurses so Jayden doesn't have to stay around so long. It's just a matter of drawing blood from his line every 15 minutes for an hour and a half. Of course, this wasn't possible as nothing is easy in hospitals. So we had to rethink if we should cancel or not as he has to have a canular in to perform the tests. In the end when Jayden woke in recovery, he was so stressed and desperate to go home I just couldn't. I felt so overwhelmed already with everything that the thought of putting him through anything....I just couldn't. I can't explain how hard it is. I just know that when he's upset In these circumstances I'm beside myself. I'm stressed, teary, angry, sad, overwhelmed and there is not one piece of me that could muster up the energy to jolly him along and get him to stay another two hours to do tests and have him have to keep that canular in that he was crying to have removed as he said it was hurting. Nope. No way was I staying. Neither was danny. Pretty sure he made that decision at 8:00am when we were first told about it.
So the tests were to be delayed for another time.

Back to being called....

When we arrived at recovery we waited in another room near by where they call us when he wakes. They didn't need to. I could hear him cry out 'mummy' and was on my way down to him before they got to me. He was sitting up, so upset and reaching out for me. I scooped him up in my arms and held him as close as possible. My heart was beating so fast. So worried. So scared for my little man. Praying and hoping with all my heart he was going to be ok. That the results were going to be ok. I was beside myself with worry.

Not long after, we were off and home with a much happier little man for leaving the hospital and parents who were equally relieved but still seriously concerned and stressed about the results. We came home to our beautiful girl and my sister who was minding her. So happy to see them both and just so damn happy to be home. I will never stop being grateful for that. For being home.

I tried to get about the rest of the afternoon by cleaning and doing chores in a failed effort to keep my mind off the MRI. I had my phone with me and must have checked it 100 times. I was so tired from lack of sleep and completely emotionally exhausted. I couldn't think straight and at times felt like I couldn't breathe. The anxiety was awful. By late afternoon the phone finally rang and the doctor told us from what he can see its good. But that we would have to wait until wednesday for the full report.
I was so relieved I cried. I know we still have to wait to hear the whole story but I was so relieved to hear it "looks ok".

It's Friday night and I've had a beautiful day with my kids. The sound of them laughing and playing together is without a doubt the best sound in the whole world. I so hope I get to hear that sound, all three of them together laughing, for a very, very long time to come .




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