Tuesday 22 March 2016

I FOUND IT!!!! - Lost post......

Dregan had his Cavernous Sinus Thrombosis during the Easter holidays 2 years ago. A 6 week journey in which we nearly lost him multiple times. Constant fights with doctors to be given information, us diagnosing him off Wiki...TWICE, and a traumatic time which we haven't recovered from yet - every day has been a fight since!

Now, almost exactly to the date, we are preparing for a 4 night stay back at Sheffield Childrens for his Gastrostomy operation. Since being given the date we have been chasing test results and specialists because of the difficulties he is going to face during the operation:

1: - He is allergic to antibiotics because of his last illness. The antibiotic the surgeon wants to use is one he is allergic to. He said 'we might have to risk it' - I said there is no chance thats going to happen. Mulitiple people chasing Allergy department (we've been referred 4 times over the last 2 years!!) and finally we get a result....they won't test any of them on him to find out exactly what he is allergic to because the reaction was so bad and hard to diagnose that it would be too dangerous and life threatening. THATS WHAT IVE BEEN SAYING!!!! So, back to square one, and the microbiologists have given a couple of alternatives. We will need to meet with Allergy clinic the day before his operation, DEFINITELY before they start him on antibiotics, to discuss this. There is no way they are giving him anything til they have bothered to see us in person.

2: - We have absolutely no idea what is going to happen regarding feeds. We get told it **might** be 4 hourly feeds, it **might** be constant, it **might** be overnight, it **might** be top up feeds and small bites, it **might** be nil by mouth.....but no actual plan for DREGAN. I expect they will do it there, but am I the only one that thinks waiting until he is in hospital actually having the operation is leaving it all a bit last minute? Surely there should be a plan in place before he goes in? We haven't had a meeting with the dieticians at all about it.

3: - His heart! At his last check up ECG (see earlier blog posts) he had a QRS delay of 111. This shows a change in his heart because of the Myotonic Dystrophy. The QRS delay is the part that causes sudden death in DM patients. This is the important number - once it goes over 100 it needs a good watch, once it gets to 120 it should have had a pacemaker fitted. Some DM specialists advocate that as soon as there is a delay over 100 you fit the pacemaker to avoid danger. So, I need to know if there has been a change. I am sure there hasn't and Im over-reacting, but I can't let him have his op until I know. He had an Echo and 24 hour monitor in December. We have been waiting for the results, chasing the results, panicking about the results. Finally after bugging them more, there was a 2 line note arrive saying there was no problems in the halter results. What about the Echo? I phoned up and she said 'Im sure if there was a problem you would have heard' - not good enough. So she found the reults and said they look normal. Yay! That wasn't too hard was it.

So, I asked about the QRS (bearing in mind this was 2 weeks ago and his op date is getting closer) she couldn't find them, but said she doesn't think its anything to worry about, otherwise they would have contacted me. I asked again for the number, she couldn't find it, she said she'd call me back. On the call back I was told they hadn't done the test so didn't have the number - thats the one we need to keep track of!! But 'visually it looks about the same so I sure its fine!' - seriously, Im supposed to accept that, the eyes of a receptionist who doesn't know anything about the condition. So I asked for the test, its a 10minute ECG, it should be done every 6-12 months!!! 'Oh yes, you can just bring him in anytime, Ill send a form today'....

We're still waiting (tick tock tick tock) and he has his operation in just over a week now!!!! I asked Scunthorpe if we could take him in there for it, its not a big thing but could save his life. They said they need to ask Sheffield. WHY!!! Dregan is under YOUR care too! So, we will leave number 3 at we still don't have an answer (but we will, or he won't be having the operation!)

4- General Anaesthetic. This is my fear, this is the one that has me on the verge of cancelling it all. The dangers of GA are terrifying me. I am sure with the right Anethesist, the right drug, the correct observations, he will be fine. But somehow I am struggling to see how its not going to be a fight to get them to listen to me. I need to print off the GA guidelines, make them read them and follow them. I asked to have a meeting with the Anethesist ahead of time, was told 'of course, we'll set up an appointment' but it hasn't happened either. I am worried it will be a 5 minute hello and handshake before the op, and they won't have time to look into what they need to do.

Im sure they are prepared in advance, but so many times we have hit these walls, that Im really struggling to relax about it. I am terrified he won't wake up.....

And, 4 days in Sheffield. Xander has to cope with it, I need to try and get access to Treetops house as I am still feeding River, I can't leave him for 4 days, I don't know how Xander will like being left either. If we could all be together in the hospital it will make it a bit easier on us as a family... I WONT be leaving Dregan there alone!

5 - Poop - you remember my last post on poop! Well, he's still on 6 powders a day and I am just hoping he will be clear for the operation. That in itself has been a bit of a trial!

Last of all - How does DREGAN feel about it?! He doesn't undertsand, he keeps forgetting, he doesn't want to have an operation and the actual putting in of the canula and taking bloods is going to be awful. It sucks! I hate that we have to do this to him.

Dates: - Going in to hospital on 30th to start antibiotics. Operation on 31st, staying in 3 nights after his op.





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