Well today brought the results of the EEG that was carried out yesterday. The Neurologist found them to be hopeful but there is still background activity going on that show signs of ' a potential for seizure' although no direct seizure activity was evident.
Promising stuff but it means that there is still an underlying problem that is as yet unresolved but baby steps before running and all that. The Neuro, Dr Thomas now wants to adjust Patrick's medication to see if we can get to a level where he has near normal response but still protection from the seizures. At present we are hopeful that Paddy can have any degree of normality and a minimum risk of seizure, whether this can be achieved - only time will tell really.
Because he is so young, I think it is going to be a case of waiting to see how he develops to see if any developmental problems arise. It looks likely that there will be problems but as to how severe or how often etc, we can't say. All we can say is that whatever the challenge, Patrick will have the top support available - US! (And you all too, no doubt.) The hardest part of all of this is that he just looks like such a (I hate this word) Normal.
I watched some film that I took of Patrick prior to his illness and showed it to Gemma. There are some possibly odd little movements that he makes and we now wonder whether symptoms were presenting themselves but we just hadn't seen them for what they were, or maybe we are now just trying too hard to see where, when and how it all started. I am sure we will never really know and maybe it isn't important to see how it started, we just need to work out where we go from here, now that we know about it.
On a more upbeat note, Patrick was visited and checked over by a nice Speech and Language therapist today. She watched as Gemma fed him and listened to his swallow and suck reflex with a stethoscope. He seems to have secretions pooling in his throat which are causing him some irritation but is otherwise coping well with bottle feeds. The physio terrorist (my little joke) also looked in and suggested putting him in his chair when feeding him as this allows his head to move forward better and so aids his swallowing. Gemma put him in the chair and this did indeed seem to make a difference. I think the speech therapist was looking towards having his tube put back in to err on the side of caution but changed her mind when she saw the improvement the chair made. We were both happy about that as so far we have seen Patrick moving forward, little by little and re-fitting his tube would have felt like a step backwards.
We mentioned to the speech lady about the fact that Patrick doesn't cry - (he didn't even cry when a cannula was inserted into his hand last night after we thought he may have been having very subtle seizures. We appear to be wrong though thank God)but she said it is quite possible that his voice box may be a bit bruised as a result of the ventilator being used during his comas. She has asked that one of the respiratory Doctors to check his larynx, just to be on the safe side. We will update you on that too as and when.
Again - a bit more upbeat - Gem was able to give him a bath while I was there and I joined in too. Isaac was trying to spur him on to splash me and for one very surreal moment you could almost imagine us being at home and having a normal bath time with the nippers. Very strange feeling for a minute! It is funny how little things that are taken for granted mean so much when they are given back to you after a period without them.
Any hoooo, I am going to leave it there for now. I will probably come back to this and revise parts or add more but this will probably be in the morning now as I am a bit tired and the old head is drifting.
Thanks for all the good wishes and love that is being sent.
Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
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