This post is going to be one full of emotion. We have come out of RCH this afternooon Noah and I arrived home at 12:45pm. Totally exhausted. I have had hardly any sleep and Noah was prodded and poked by the nurses at ungodly hours of the morning because they had to do their obs.
Noah's veins weren't the best this time and had been pricked about 5 times and he didn't even flinch. He took it and not a peep out of him. If it were any other kid they would have screamed the place down. He just took it.
On Thursday morning I awoke at 1 am to find Noah in a pool of sweat, took his temperature and it was 37 degrees, He had just had calve muscle lengthening two weeks ago so he was still recovering from that, I gave him panamax and diazepam because I assumed he was having muscle spasms. We went to sleep, then woke at 6:15 am with Noah having a barking cough but sent him off to school as I had a funeral to go to at 12pm. I just didn't want to miss it. I still feel upset that I couldn't make it. I had a meeting in Glen Waverley in the morning after dropping Noah off and I was going to make my way down to Dandenong for Avah.
Noah's Aide at school was amazing. She did everything she was supposed to do, kept him calm and kept him on oxygen as he was progressively getting worse as the morning went on. and I kept gettting the updates every 15 minutes so after the third phone call I decided it was time to go get Noah and take him off to hospital. He was on 6 litres of oxygen before I got to school.
From there I decided to take Noah home and get a few things together for hospital. I packed the van with everything I needed at hospital and we were off. Noah was insisting we get going sooner than later, he just knew how he was feeling. No GP was going to fix this. Off we went to RCH with a phone call to ACE project first. (Accelerated Care Through Emergency) we just had to let them know we were coming in.
In the back of my mind I was thinking I have missed Avah's funeral. My mind was everywhere, keeping an eye on Noah in the back seat and also my mind on the celebration of Avah's life. She was such a princess.
We got to hospital and went straight through to Resus room 3 in emergency because they had to assess and give more oxygen if needed. I was calm and did what I had to do with Noah, kept him calm reassured him, but he was also reassuring me. In his own way telling me he was in the right place and he felt safe. he was comfortable and have to thank the nurse in resus, he was just brilliant with Noah and myself. Doctor was really great too, as he knew that I knew exactly what I was doing with my boy.
Lungs weren't good and neither were his ears and throat. I just knew so it was on with the Angel cream on 4 sites. Still umming and arring as to whether he needed oral or IV antibiotics. We were moved to a cubicle when he was stable, went off for a chest xray, came back and waited for the results. Doctors were sure it was viral pneumonia, still lots of waiting, (we have learnt that screaming at doctors to hurry up doesn't get you anywhere) lots of patience does. At this stage it was about 5:30pm and Noah still had not had all his PEG feeds as he just didn't feel like "eating". He was getting dehydrated too. Still Doctors were unsure about IV so we waiting till we got onto the ward for this to occur. Two doctors tried to insert an IV in 5 different sites on Noah's arms, then an ICU doctor was called but didn't arrive until 4.00am when Noah and I had just got to sleep. what a night. I told him to come back in the morning.
Noah woke up better than the night before and was smiling, then the ICU doctor walks in and sees Noah who then decided that Noah did not neeed IV antibiotics. We could treat this with oral penicillin. Off oxygen the next day, antibiotics started and then his started to pick up. Two days of hospital and we are home.
I think there are people in my immediate family who just don't want to know what life with a special kid is like. Its hard at times but majority of the time I wouldn't have it any other way. I have learnt so much about myself and how strong I really am and just how weak, ignorant, inconsiderate, spiteful, rude, judgemental, some people can be. This is my life, I didn't choose Holland but wouldn't change it for one minute. He is who he is and that is that. He can communicatie if people would just give a little of their time. If people gave a little of their time they would realise how clever my son is. Sometimes its really hard to explain to people that having a physical disability doesn't mean they have an intellectual disability. People just see the wheelchair and the high physical non-verbal child and assume he is intellectually challenged as well. Noah is nearly 10 years old and they still think he is intellectually impaired because he is non-verbal.
If you do not have the ability to speak, then you must be intellectually impaired. It is not the case with Noah. He understands what is going on, but has not really had the chance to use his voice to express himself because others just don't give him the time. When we are at family gathering Noah can be at the table with everyone else but he is ignored, I timed it one day, Noah sat at the table with his cousins, Aunties and Uncles and not one of them spoke to him for three quarters of an hour. I just couldn't believe such ignorance, such rudeness, spitefulness, being inconsiderate to someones needs and feelings. They don't see that Noah feels, sees, and often wonders why do they act the way that they do. He often asked me in the past, but not anymore, he treats them the way they treat him. What are they teaching their own children, that its ok to treat someone with a disability with such low regard. I am to the point where I don't want to be around them because of the selfishness and ignorance. They have had 10 years of getting used to Noah. If they haven't got it by now they will never get it.
Mainstream schooling was the best thing that we did for Noah, and some just still question why? Why? They should go into that special school and see what it is really like for the children who attend then they would know why. and NO it is not the best place for him, so he can be segregated like it was 30 years ago. I don't think that is what I would like for Noah. He deserves better than that.
I will be adding to this but for now chew on this.
Noah's Nonna came to visit today. Its a one hour visit every month or so and she only lives 10 minutes away. Noah is PEG fed and has been for 5 years, she came with a block of chocolate and told Noah that "mum will squash it for you to eat". it was a slap in the face. who does that??? who says that???
She looks after my sisters children twice a week but when Noah got his PEG I was told never to ask mum and dad to help me again because they are too old. Double standards all the time. What can I say????
Since Noah has come into their lives I have seen a side that I don't really like. Noah is all perfect but they can only see his disability. I have seen things that I don't really understand and I think I will never understand.
I can't rely on anyone but me.
2 comments:
Dear Maria, it was heart breaking to read this and also eye opening. I felt like you do so often in the past... Then I learned to ignore it. The only thing that helped became them (my relatives) a little different was to threat them with following word: 'God help you all, when P. will start talking and that he will say to me; why you're doing the difference. Z
That he feels hurt. If he will say this, I will never speak to anyone of you again.'
That helped. Most of them chafed their attitude when around him. Anyway it still hurts to see that only some kind of threat helps change people.
So sad reading this. I'm in a similar situation re some family members and my daughter who has a partial diagnosis of cerebral palsy. And I also wanted to add that ALL children need to be talked to - my dd has a severe intellectual disability too, but she understands loads, and I talk to her all the time. Perhaps that's why she is so alert and interested and responsive.
Post a Comment