A week continued

Thursday dawned brightly, snow virtually gone, drizzle falling slowly. Children all in fairly good form.
Rosie had a bath whilst I filled in books and signed planners and found lost PE kit etc. Rosie bus came at just the right time and Joshua and Christina went off happily with Dad, all the right cooking gear gathered together and correct homework packed into bags.

Jonathan's Taxi was due just over half an hour after everyone else had gone and Eve was sleeping so I decided to grab a quick shower in peace.

Dressed and a coffee drunk still hot before it was time to walk to the end of the drive with Jonathan, and thankfully a familiar driver turned up on time.

So returning to the house I made my way up to Eve's room and found clothes and towels and flannel and set to to get her dressed.

Usually I disconnect the oxygen tubing from her face, wash her face and upper body and get the vest on before her Sats drop too low. Today, I rolled her to her back and took off the oxygen and wiped her face and the alarm was going. 92 91 90...I put the canula near her face and her face was turning grey, her eyes were closed and she wasnt breathing.....OK this is not unusal so I call her name and flick her feet and turn her on one side and then the other. Pat her back and rub her chest...by this timne SATs are down at 80 and nothing is happening so I grab the phone and dial 999 whilst I am giving the address to the ambulance control she takes a shallow breath I rub her chest and call her name and blow in her face, the alarm is driving me mad so I silence it and blow in her face and rub her chest another shallow breath. Then another, slowly slowly as I am talking to control she begins to breathe more easily and more regulalrly. By the time the Ambulance actualy arrived she was breathing well and opened her eyes and gave a weary smile.

We decided not to go in to the ward as the risks of her picking anything else up was greater than the risk of not being seen on the ward. Ambulance Crew were happy with that and we signed the paper work and they left. I rang and left a message on the answer phone at the Epilepsy Nurse Specialist's office. I felt that there were two options to the cause of this. Either it was a loss of drive to breathe, or it was a siezure. I decided the better option was seizure! Is it OK to pick and choose?

Eve's disease is causing a degeneration of the brain stem which controls Autonomic functions...heart beat breathing and other such things. So if the drive to breathe is being impaired to that degree then it is not good.

Seizure activity and increasing seizures are also a progression of the disease but not quite so dire...in my mind anyway.

We have since had a call back from the Epilepsy Nurse who took details and pormised to discuss with Dr R. She made a comment which I found very frustrating...asking me if Eve had been shaking and jerking during this episode....she hadnt....she then asked what made me think it could be siezure then? I am frequently annoyed by the medical professionals we meet being unaware that Siezure does not necesariloy mean jerking and shaking. However to have the Epilepsy Nurse specialist makeing that assumption is somewhat worrying.
I was however confident she would relay my concerns acurately to Dr R. This she obviously did and we had a call back This Monday increasing the antiepilepsy drug she takes. We also have an appointment to see the Neurologist on 5th February.

So Thursday followed on fairly normally as did Friday, although I chose to keep Eve home as she was still not totally right, and I didnt want to risk something else happening at school before we had an oppinion from Dr R.

At Lunch time on Friday we had a call from Jonathan's College, Jonathan had apparantly had a sudden outburst at the lunch Table, thrust his plate across the table and then stood and tried to tip the table over. It was totally out of character, totally unprovoked from what anyone can tell and he calmed as soon as he was moved away from the situation.

Jonathan sometimes chokes on his food. He has a very poor cough reflex and panicks if he does choke. He has in the past reacted like this to a choking episode, so I was fairly sure this was the problem as it had happened whilst he was eating. However the College staff were not convinced that this was the case as his meal had been liquidised for him at his request, he had not seemed distressed before or after the incident. So we dont know.

Most worryingly this incident was replicated at tea time. Although this time he had finished eating a couple of minutes before the epsiode. He had been talking nicely, smiling about something and then pushed his plate across the table stood and tipped the table sending everyone elses meals flying. Moving him away from the table he suddenly came out with a mouthful of aggressive language that is totally beyond his vocabulary.

Now I was worried. Something had to be behind these two outbuirsts. but what?

After the even on Friday night he seemed totally oblivious to the whole event. He sat in his room with his head lolled to one side. I eventually persuaded him to have a shower and get ready for bed and then he lay on the bed a while before seemingly recovering and sitting to watch TV.

We took him to A and E on Saturday to see if they could help us find out why?

Bloods came back normal
Chest X ray was normal
Urine was normal

They just did not know. Said they could not investigate further in A and E but neither did they want to point us to where to go for help.
So we are totally helpless. No idea what to do next. So far he has been OK since. Do we just forget about it or do we seek further help if so where?

Today was a day of multiple appointments, I had two at Joshua and Christina's School...very positive outcome from a meet with the Head...one point we needed him to get in on he was very receptive and another that was more of a complaint about the school meals system that he was very concerned about and ready to get involved in sorting out.

Second appointment with the Visually Impaired service who were very good at accepting they had made a mistake took on board our concerns, made Joshua feel better about voicing his concerns and looked at ways of getting over problems he has in some lessons. He could end up needing to tow a trailer around school but he is happy so far with the suggestions made. Simple discreet signal option made there and then for him to alert teachers to problems, and promises to address persistant teacher errors.

All in all it was very positive, and very hopeful.

Meanwhile David and Jonathan had been over in Peterborough with the Dermatologist. Jonathan's skin is back under control again and his creams have been stepped down to a lower steroid level and loads of emulsifyer.

David's Skin Biopsy result had come back only yesterday....he deffinitely does have Coeliac Disease. The Dermatologist has prescribeed a tablet to control the Skin Rash part of this...hopefully he wont be one of the minority who develop serious side effects from this drug. He has to go back for blood tests next week to be sure.

Now we have to make time to go see the GP and discuss a referal to a dietician and hopefully get some of his needs prescribed. Should help my grocery bill somewhat!

So that is the end of my week of woes and searching for diamonds.....we certainly do have some diamonds amongst the people who work with our chidlren. We are so fortunate to have the instant access to the Doctors for Eve and Rosie. I have been delighted with the reaction of the staff at Joshua and Christina's school every time I have had need to go in. The school isnt perfect by any means. Howevr they are more than happy to accept their failings and do something about putting them right.

We really now need to find Jonathan the right support from the Adult Services ,the lack of overall care from a peadiatrician really leaves us feeling vulnerable and let down.

I really need to find out who to write to and then work out a constructive critisism letter to send.

So enough from me. I am needed here now as David and Joshua and Christina have gone off to play at Archery. I am praying this turns into a really good opportunity for them to have time together away from the stresses of home.
Tina