Michael was admitted to hospital the day before his birthday this year, then sent home that evening. So he managed to have his birthday at home, but was not a very well little boy at all.
The day after his birthday we were back in hospital, in 3 litres of 02.
He had chest x-rays taken, bloods done, was started on steroids and antibiotics and within a couple of days was back on his feet - complete with 02 cylinder on large trolley - still in 3 litres of 02, but so much better in himself.
He came home on the 3rd December, the day after his Dad's birthday!
Christmas
I got Christmas at home this year. It was lovely - this is the first year since Michael was born that he hasn't spent some or all of Christmas in the hospital. It was lovely waking up on Christmas morning as a family.
General things that happened this year
The Autism Team became involved in Michael's life, this involved someone working one afternoon a week, purely with Michael, building on some of the skills that he lacked. The support worker worked really hard with Michael on his sharing skills and he loved the afternoons she used to come to see him.
We also started attending a support group for Children with Autism - bit like the Opps Class.
Michael speech and communication has come on in leaps and bounds this year, with many thanks to all the hard work put in by his 1-1, and the nursery staff, working on his communication skills. He was putting two words together and his vocabulary improving all the time.
Michael loved going to Nursery, he had an extremely enjoyable time there, and by the time he left his interaction with other children was developing to the point where he knew and recognised several of the others, and would go and try to join their chasing games.
As such his tantrums have eased slightly..........although the problem with smearing remained for some time, we did eventually seem to lose that habit.
Toilet rolls are for shoving down the loo and flushing, as you can imagine we have had more than our fair share of blocked toilets.
February 2004 - Michael went for a CT Scan of his lungs - We were at the hospital for around 7am, we were a little early!! So there was lots of hanging around and trying to keep 'Mr Active' entertained, but the playroom there is lovely, lots of interesting toys for Michael to play with.
When it came to having the scan we went down to the CT suite, and met with the Anaesthetist, who was lovely, explained what he planned to do, and how long it should take, about an hour all-in-all. He had a look at Michael's hands and arms and announced "typical preemie" so "the plan is to gas Michael first and then put the cannula in".
Martin and I went off to have lunch and returned in plenty of time, another half an hour came and went, and another half an hour came and went, and I was starting to flap!
When we were asked if we wanted to go through to see him................transport me back 4 years, the machines, the tubes, my little man lost amongst it all.
The Anaesthetist explained that he was having a bit of trouble waking Michael, normally he wouldn't allow parents in, until the patient was well awake, but he figured we knew what it all did, what it was for and had seen Michael attached to it all before! Michael still had the vent tube down his throat, and as much as we tried talking to Michael he didn't really want to know! He was snoring which the Anaesthetist wasn't too impressed with!! Michael did try forcing the tube out of his throat, so it was removed and it was seen as a sign of becoming alert. Eventually it was agreed that Michael could return to the ward.
So back we went, attached to a SAT's monitor and oxygen, Michael was snoring, and as he did so his SAT's were dropping, and the nurse was getting faster........neither Martin or I really understood what it meant, until it was explained that Michael was actually closing his airway down!
It took Michael almost 7 hours to come round from the Anaesthetic, so it was decided he should spend the night in the hospital .... during the night his SAT's dropped to 76% so he was put back onto 02 to maintain his levels.
CT SCAN results
We went back to see the Resp Consultant two weeks later, he had Michael's CT results up on the light board. He did manage to show me one area of healthy lung....but the rest of the slides were very pretty, and speckly in appearance.
He explained that Michael's lungs show extensive scarring, that some areas of healthy lung aren't being used because they have grown behind areas of scarring, and air cannot get into them, other areas of his lungs have shrunk and shrivelled so they are not being used, he advised me that Michael still has limited lung capacity, and is still extremely susceptible to colds, chest infections etc.
He also explained that the CT scan confirmed why Michael had been so ill during the last 4 years, and that his lungs have been extensively damaged.
He advised that it could be between 8 to 15 years before Michael's lungs are such that the scarring will be minimal, if he can be kept healthy and remain infection free.
By May/June time Michael had a chest infection, I took him into our local hospital one morning, he was not a well bunny, but not desperately sick, they checked his SAT's they were 90, after 3 hours in there Martin took over as one of our other Children had an appointment elsewhere.
The Dr ordered a 20 minute Neb's routine, despite the insistence that Neb's don't work with Michael. Once the Neb's routine had finished his sat's were 90.. The Dr sent him home. When Martin got home with him I took him to the GP, who prescribed antibiotics and Steroids.
June 2004
Michael had an appointment at the Dysphagia Clinic, so Martin and I set off for London on the train. Michael loved the train!
When we arrived, Michael was kept occupied by a Nursery Nurse whilst we discussed our concerns regarding Michael's feeding issues, with the various professionals involved in the clinic. Those involved, Speech & Language Therapist, Occupational Therapist, Psychologist, Neurologist, and apologies to anyone I've forgotten.
We went through his history with them, the problems that we have encountered getting Michael to move from smooth pureed foods to lumpy food to solids. We discussed Michael's ability to chew just about anything and everything but his apparent inability to swallow.
Michael was then brought in to eat, in front of all these professionals, so they could assess his eating ability, he enjoyed his mousse and had a go at some biscuits, failed dismally on the grape, which I knew he would! As is normal it didn't take him long to get fed up, and become more interested in the toys etc in the room.
When we went into discuss the findings with the specialists they told us that they thought Michael's feeding issues were primarily due to his Autism, and that his difficulties are based on behaviour.
However they did say that there were some subtle signs that there might be something else going on, and as a videofluoroscopy had been mentioned they were willing to put Michael forward for one, and it just so happened that they had a cancellation for the following day...did we want it?????
They then went on to again talk about how common feeding issues are in children with Autism, and how there were no clinical signs of any neurological problems.
We left with the distinct impression that they had decided Michael's feeding issues were his Autism. I tried to disagree with them, but it felt as if they were not listening to what I was saying.
I was devastated, no-one wants there to be anything wrong with their child, but having spent 4 years arguing that Michael has a swallow problem, and banging my head against anyone who would listen or not as the case maybe, it was devastating to come out of there feeling like they had done the same.
The following morning we caught the train to London, and went for the videofluoroscopy.
When we arrived at the hospital in London we went round to the x-ray dept, and one of the professionals from the previous day's meeting met us there, and showed us round to the videofluoroscopy suite.
Michael, had to sit in front of an x-ray type machine, and eat mousse, and drink juice, both contained a barium type substance that showed up on the machine. There was a lot of concern that perhaps Michael would not tolerate the mousse, because it had changed colour. Once again I found myself saying he does not have a problem with colour, or texture.
The videofluoroscopy showed the Michael has an abnormal swallow and Pharyngeal stage Swallowing Difficulties, he has no swallow reflex in the back of his mouth, it doesn't kick in until further down his throat, this means that his airways are left open and Michael is at risk of aspirating feed into his lungs.
August 2004
We had a trip back to London today, for a visit with the Neurologist to discuss the feeding study.
Michael has Pharyngeal stage swallowing difficulties, especially with fluids, about the only thing he is able to swallow!
So we have to go back to putting thick 'n' easy in his liquids, to thicken everything in the hope that this will prevent him aspirating.
The neurologist is going to arrange for Michael to have some Bulbar Facial Muscle testing, to look at the way his facial muscles function, the plan is also to arrange a MRI of Michael's brain.
We discussed our feelings that they had hung Michael's difficulties on his Autism, and made it quite clear that we were not happy with the way the consultation has gone.
It now appears that this is being seen as a Neurological Problem rather than a behaviour one. The neurologist advised us that it is likely to be due to brain stem injury, and because it is a reflex there is little hope of anything ever changing.................Michael is likely to be tube fed for the rest of his life.
Remember the comment made by one of the nurses in NICU, when we first went in there, about dropping Michael on his head, not being the best start in life???
It was at this point that, that comment came back to haunt me, and I have repeatedly questioned if this damage could have been caused when he was born
September 2004
Michael started school this month, he goes Monday to Friday, the taxi collects him at 8.10am and returns him home at 4pm (ish)
He loves it!
He is in top group for speech therapy and his teachers describe him as being on a steep learning curve at the moment...........so much so that they are considering integrating him into the rest of the school.
Behaviour Issues
Have reared their ugly head again, we have recently been struggling to deal with spitting, tantrums which include throwing himself against glass doors and windows.
We've also just had our second stint in 2 months in hospital to have playdough removed from out of his ear!
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