Monday, 8 October 2012

Gfr test today

Back in hospital today bright and early as Jayden had his Gfr test booked. As soon as we arrived the nurse put on the Elma cream on all the spots on his arms and feet that showed a possible vein for a canular( no doubt wrong spelling) to be inserted. Last time we had one of these Jayden had a bad experience with the canular being inserted and he and i were both dreading it today.
The nurse took us through for his obs- blood pressure, temp, height and weight and then we went into the outpatients room and chose a bed. the one closest to the door we decided was the best. Not long after settling in the nurse came to take us to the treatment room where Jayden was to get his canular put in. He went nuts when he realised what was happening and fought as hard as he could to stop it. its truly gut wrenching to see him so upset and scared and not be able to do anything to stop it. fortunately This time we had a doctor who spent a good amount of time finding a vein then got it first time and did it quickly. I was so relieved as I most definitely do not have the energy for tolerating someone not getting it right again. I know that might seem unfair but at this point I just have nothing left.
After it was inserted and the nurse wrapped it up with a bandage We were sent upstairs to nuclear medicine where a purple coloured radioactive substance was inserted into the canular and hence into Jayden's veins. They also removed the canular afterwards as we no longer had any use for it. Jayden through all of this was really struggling i really think he's just had enough like us all. he didn't want to comply with anything even the simplest things and just wanted to come home. Who could blame him?
From there we left to go back to ward 3b to get blood taken from his Broviac every hour for four hours. On the way I stopped at the cafe with Jayden to get a coffee and a juice for him. While we sat waiting for my coffee a wonderful lady came up to me and introduced herself as someone we had met when we were up at ward 5A when we were first admitted in the beginning of the year. She was so kind and said some beautiful things to me and handed me a gift. i cried as i looked into her eyes for from them i could see someone who truly cares and so very genuine. thankyou to that beautiful woman. i wont forget your face or your kind eyes and appreciate your kind words and gift. she could not have approached me at a better time as i was feeling so lonely and crap. even though i cried when she spoke to me she made me feel better, in a small but very significant way.
Not long after she left another person whom I met on 5a sat at my table and I was so happy to see him. A beautiful man whom him and his wife we befriended in the beginning of this mess. We may have only known them for a short time but they feel like family. I was so happy when his wife came down and joined us as well and I haven't felt so understood in a while. We talked about all things relative to our situations and i was even able to have a good laugh that i haven't had in ages. God it was good. so good to see these people and i so desperately needed it. There truly is nothing more refreshing and absolutely crucial during this journey to be amongst people who get it. They don't necessarily have to have a child with the same condition or even a condition at all, they just have to "get it". And for most people they have to be living it but for some very special people I know they don't have to, they just "get it". This beautiful couple and their family are living an entirely different circumstance but they "get it" beyond words. One of the most beautiful couples I have ever met and I love them dearly. Shayne and Linda- you are truly special.
There is no doubt that one of the most amazing things that have come out of this extremely painful and difficult situation is all the beautiful people we have met on the way. I am so very grateful to each and everyone of them as I really don't know how we would have got this far without them.

We are now home, it's late, everyone's in bed. I'm sitting up waiting to make a call to speak with dr goldman. The time difference is a nuisance but I'm determined to catch him. I really need to heAr his voice and talk to him about Jayden and round three. We found out today nick has bought Jayden's MRI forward to this Thursday and we are hoping with all our might that everything is ok.

My sister is still here and expecting to leave to go back to her home on Wednesday. I'm really going to miss her and Jayden is too. I have had some much needed chats with her and she has truly been a wonderful support. I wish she wasn't leaving. It will be very quiet around here without her.

I'm sitting in front of my computer looking at my screensaver which is s picture of Jayden before all this mess began. Beautiful little boy that never did a thing to deserve such a rough ride in his life. I still can't believe this has happened to him. I watched him today with linda and he looks so different to me from the little healthy boy he was. No hair, pale skin, his eyelashes are now falling out as well and no doubt his eyebrows to follow. Yes, they will grow back but it makes no sense that the treatment he has to get to treat this nightmare cancer or any cancer for that matter does so much damage to such a little body in the process.

I'm tired. I want to sleep and I do hope it comes quickly. I'm going to try ringing again and hopefully get through this time so I can clear my head hopefully and get some sleep.

- Posted using BlogPress from my iPhone

1 comment:

  1. Hi Leisl

    I came across your blog from a link on my cousin's blog site. I can't even begin to imagine the journey that you and your family and your gorgeous little man are going through.

    I can only pray for your circumstances and for wisdom for your and your hubby as you work through what is the best decision for you all. Be assured that the decisions you make will be the best decisions that you can make as only you know what is right for your family. Someone else may make a different decision in similar circumstances, but their circumstances will never be exactly the same as yours as it will be them in it, not you.

    Thank you for sharing so honestly what is happening as it will no doubt be of comfort and support to others who may walk a similar path.

    Praying for a miraculous healing for your little man, and for the strength for the journey for you and the rest of your family.

    God Bless