Battle, bureaucracy and bollocks

Where have we been? It's been a while since I last posted and to tell you the truth I haven't had much spare time.


Most of my time has been taken up on the battlefield. Just one ridiculous fight after another.


On the plus side Zack has wangled an extra day at nursery, he now attends three mornings a week. He's not very happy about it. I am.  He also has a new looker-afterer, he's not very happy about that either. As his dad said, he has to get used to different people. I suppose he needs to just shut up and put up then. 


Met with the ENT doctor about Zack's glue ear. Really wished I hadn't met with the ENT doctor about Zack's glue ear. I swear I am talking a different language in there as he doesn't seem to hear me. Pun not intended. I was asking for gromits for Zack, he said they wouldn't make a difference as his hearing is the same even with hearing aids in...do you remember this discussion from about a year ago? I kind of get what he means but at the same time, how helpful is it to have glue ear, surely leaving it for three years isn't healthy. 


We also discussed Zack's snorting at night. Again, took me about ten minutes to get him to understand. We are having a sleep study at some point to see what's happening. He recommended nasal decongestants, which by the way I have since found out you can't buy over the counter as he suggested, oh and nor can my GP prescribe them, so ball back in his court. Do you see why I haven't time to blog. 


Adaption is back to feasibility stage. At least I managed to get grants lady round to look at the house and make useful suggestions. She was very helpful and is returning with her boss due to the complicated nature of the house/job. 


At this point, all of the above can go and shove itself up it's own backside. I have had enough of all the battle, bureaucracy and bollocks. Sometimes I think people that are involved in lives such as mine need to experience the reality of it all. Things need to be simple. Easy. Co-operative. 


Ha. Wake up. When will that ever be the case. 

Are you saying his hearing has improved?

After two hours in the hospital waiting room Zack and I finally get to meet the elusive ENT (Ear Nose Throat) consultant as well as our usual Audiologist consultant, to discuss Zack's middle ear problem.


ENT man discussed the use of grommets and suggested that it may be worth waiting until Zack was a little older to see if the glue ear went away of it's own accord. He also suggested that we increase Zack's hearing aids by 30% to see if they make a difference.


Sometimes in appointments you don't feel like you have time to think, to digest what is being said, a lot takes place and you need time to reflect. Some discussion went on between the two doctors about testing Zack's hearing again with and without his hearing aids. Suggestions of sedation was also mentioned. Then the lady that makes Zack's ear moulds for his hearing aids comes in and another suggestion is made of getting Zack's moulds redone (the plastic bit that goes in the ear for the hearing aid).


We follow ear mould lady into another room and she disappears for a minute. I have a think. Wait a minute......this isn't right. The lady comes back and I say to her that I don't understand why we are increasing the hearing aid volume when there is no difference in Zack's hearing with or without the hearing aids. His hearing is good, it's not that he can't hear, he can hear. She looks at me and says so are you saying his hearing has improved? Yes I say. Well that's not what they got in there. Hang on I say, they think I am saying his hearing has got worse and even with his hearing aids in it isn't improved? Noooooooo I say, that's completely wrong, he can hear, he hears me creeping into his room, he hears his little music box, he listens to me on the phone. What is wrong with these people I have been telling them this all along. So there is not point in increasing his hearing aids. Oh for the love of God.


The lady disappears again. Comes back. Yep, definitely not what they thought you were saying (I love how I get blamed for this). Oh and the audiologist has gone but but ear mould lady will get hold of her this afternoon.


That afternoon I get a phone call it's ear mould woman again. Well they all thought you were saying that his hearing had got worse. No I said for the umpteenth time, it's improved. So she suggested I can either try and get his hearing re-tested or come back to the joint clinic. I did say I didn't see what the point of that would be as the doctor was more or less suggesting no grommets as A) a G.A can be quite dangerous for a small child and has risks associated with it and B) They only last about 6 months. 


We then discussed if I might be able to get Zack to sleep at a required time in the day so they could test his hearing. I'll try I said but I can't be sure if he would go to sleep. The lady on the phone asked me how long it might take for me to get him to go to sleep. How the hell should I know. In the end I just said send me an appointment for this hearing test and we'll try to get him to sleep on the day at your required time. Losing the will to live.


To be honest, I was so fed up with the whole thing I just thought they can all push off. I know he can hear me and to prove a point I shook his little rattle really quietly out of view and he smiled. Every time. 


I think some doctors need to start listening to parents and respecting what they say rather than thinking that just because a child has severe brain damage they will never improve. They will always improve, might not be in great leaps and bounds but there will always be progress. Plus don't under-estimate Zack he has a lot to prove and is extremely stubborn.