Friday, 12 October 2012

The last couple of days and MRI

I haven't written in here for a while because to be honest I have just been too damn tired. It's morning though now and I had a better night sleep. My little man is sitting next to me and we are watching cartoons on the tv. He had a big day yesterday and he's missing his Auntie Linda. She left a couple of mornings ago and he's been asking after her ever since. Wish she could move in with us permanently.

He just vomited after a glass of milk. Since he got back last night after his MRI he hasn't been the best. He had a huge vomit when we got home and we kept him off his feed last night and now a big one this morning. He has a low grade temp at the moment which was expected according to the doctor we spoke to last night. This is because one of his lungs collapsed during anesthesia. It's still like that but apparently should rectify itself with time. Not sure about that doctor as he talked it down a bit and I guess in the big scheme of things it's the least of our worries but still a collapsed lung sounds serious enough to me. We are assuming that's why he is pretty miserable this morning and not up for much at all, poor little mite.

Yesterday was a big day for him and he was not in the least bit happy to be back in hospital. There is no doubt children have a sixth sense for things and he knew from the moment he arrived that something was going to happen and he wasn't going to like it. Fortunately it wasn't chemo and anything compared to that is a bonus. When we arrived we played in the waiting room for a short while before the nurse called us in to do a set of obs on him and then after that we waited on his bed for the MRI people to call us up. He was also put on a drip for hydration as he had been fasting for so long.

By 3:00pm we were called up to MRI and remained in the waiting room up there till 3:30. In that time we met with the guy who was to do the MRI followed by the anesthetist- really lovely lady. Only one of us can go with him in there and he wasn't letting go of me nor i him, so we went in together. Inside were three other nurses and the anesthetist waiting for us around a bed. Jayden knew instantly something was up and clinged on to me for dear life. I held him tightly in my arms as the anesthetist pushed the white substance in his lines. As soon as he felt it hit he cried and Tried so hard to fight it off. Seconds later he was asleep and I laid him down on The bed with the help of the nurses. His little face so innocent. How His life has come to This i will never know or understand and it will forever break my heart.

I walked out after a last kiss goodbye and left him with the nurses. A huge trust is involved with them and the very big hope that they will do the right thing by my son.

Danny was waiting outside and embraced me in a big hug- just what i needed. It doesn't get any easier, none of it. We then headed back to the ward for the agonizing wait to see him again and to hear the results.

An hour and a half later the nurses came to get us and we went up to see him in recovery. He was still asleep and looked peaceful. Because he had an LP in his spine he had to lay flat for at least an hour so fortunately he was still asleep and had been for twenty minutes so only forty minutes to go. The nurse and another guy ( cant remember his title) wheeled the bed with him on it back to ward 3b with us closely behind.
When we arrived back to our room They wanted us to lift him off and put him on his bed but fortunately after I pleaded with them that we don't wake him so he remains flat they were ok and left the bed with him on it in the room.

Not long after that the doctor came in with the results for the MRI. He told us that they seemed fine but we would have to wait for the official report. So that was comforting. He then told us that one of jaydens lungs had collapsed but should rectify itself with time?? I have to say that concerned me a lot then and since then, as jayden has not been his usual happy self and has needed me to carry him most of the day today.

The same doctor talked to us about round three and was very pushy if not somewhat aggressive in his approach. He told us we could live to regret our decision, that doctors all over the world are saying you need three rounds and basically made us feel even worse than before. Thankfully a beautiful nurse whom we have known for ages here and who sat in on our conversation with nick told us that our concerns were real and valid and that she has seen in the past the kind of serious side effects that can occur during this treatment and fully understands our reluctancy. She told us to trust our gut instinct and go with that.
I have to say I'm still confused but together danny and I have decided to draw up a list to help us decide. Neither of us want jayden to go into round three in bad shape so unless his liver, lungs and overall health is in tip top shape we are not going to risk his life, not when we don't even know how short or long that will be.

It's the evening now and getting ready for bed. Luke and Layla are at their Nannas for a sleepover and I miss them terribly, so does Jayden. I'm so looking forward to tomorrow when we are all together again.

2 comments:

  1. It makes me so angry, not just for you, but for any parent, or in fact ANYONE, in this situation to have to deal with the pain and anxiety of the situation, and then throw an aggressive doctor on top of it and one that tries to use guilt - wow, what an obnoxious, uncaring (not to mention unprofessional) twit!!! All doctors and nurses, but especially paediatric ones, should have to prove they can show understanding, compassion and above all else, empathy, before they are allowed to practice in this field. It certainly sounds like our WA medical staff could learn a thing or two from the US procure personnel.

    I hope Jayden is improving and feeling a bit better, and that his MRI results are positive. You have made the best decisions for Jayden to date, I'm sure you will continue to do so. Take care of your cheeky little monkey, your 2 other gorgeous kids, and take care of yourselves too. xxx

    ReplyDelete
  2. First off, amazing that your MRI results were good, but upsetting that with the news of Jayden's lung you were not able to celebrate freely. I always think that doctors become so desensitized over the course of their careers to how news like this impacts patients/parents. As if a collapsed lung is no big deal! I remember many times in Gavin's treatment in Toronto being faced with a total lack of empathy from some doctors. One in particular who stands out as a complete a**hole.
    The good news is that his lung will heal in time, but I think it is a good indicator of how stressed his poor little body is. Only you can know how much Jayden can take - for us, going into round three of high-dose, all seemed well with Gavin, his liver and kidneys and hearing were still okay, but we had no way of knowing that it was his LUNGS that were absorbing the chemo as outwardly he seemed so well and did not require oxygen, didn't seem tired, etc. Until we did round three, which proved to much for him. He eventually recovered and has survived event-free for almost two years.
    The doctor who is unfairly pressuring you is acting like there's some kind of silver bullet for this disease. We know kids who have survived and not relapsed who only did two rounds, we know kids who have not done radiation (like Gav), and we know kids who have done it all, round after round, and still inexplicably relapsed.
    Listen to your heart and make the best decision you can, that is all you can do. Sending you lots of positive thoughts and healing vibes to Jayden's little lungs. xoxoxo

    ReplyDelete