Coming home
Michael came home from hospital when he was 22 weeks and 5 days old, it was wonderful to have him home, if not a little scary.
About a week before he came home the oxygen concentrator was fitted into the house, we had to notify the insurance company that we had 02 in the home and also that we would be carrying it in the car. We also had to let the local fire station know as well.
But walking out of the hospital was an amazing feeling at long last our baby was coming home.
Michael came home in .2, 02, with medication for reflux, thick n easy added into his feed. He weighed 11.5lbs
It didn't take us long to get settled into a routine of, almost daily visits from the Outreach nurse to check Michael's sat's levels, the weekly weigh-in visits from Health Visitor etc.
However what we weren't banking on was Michael being home for 3 weeks and catching, what I assume was RSV.
Our local hospital is not brilliant at actually doing swabs to determine exactly what sort of chest infection a child has. As we were to discover later in the year.
It's not easy when you have older children in school, who come into contact with all sorts of germs and virus's, to keep the house totally germ free!!
So we were back into hospital, at one point Michael was having 2 litres of oxygen blowing up his nose + 5 litres from a face mask. He was in hospital for a month, before his 02 levels reduced enough for us to be able to bring him home again. He came home in .6 litre.
From here on in things seemed to go down hill, Michael practically stopped putting on weight, we were lucky if he put an ounce a week on. His 02 requirements remained static.
Because Michael was 02 dependant, the Consultant he was under, made home visits. On his next visit he expressed concern that Michael was not putting on weight, that his 02 requirements had remained static, his development had slowed and that his liver was enlarged. He referred to Michael to a Resp Consultant.
Michael was admitted to the same teaching hospital, he'd been in NICU, a week or so later, for assessment.
Whilst there he was tested for reflux, Cystic Fibrosis and his feeding skills to see if he would gain anymore weight in the hospital - It was at this point he was diagnosed with Failure to Thrive.
Michael was seen by a dietician who changed his formula to a higher calorie feed, as it appears the feed we were giving him was higher in Carbs, which meant that he was actually having to work harder to burn off the Carbon-dioxide he was producing.
We took him home with an appointment to see the Resp Consultant in clinic in the pipeline.
We had Michael home with us for another 2 months before he developed another "cold"
We had direct access to the local hospital, so being concerned about his breathing, and this cold I took him up there to be seen. They admitted Michael and kept him in for 24 hours before sending him home.
That night I didn't get to sleep, I spent all night with Michael listening to him breathing, the noise was awful, I'd decided that I was going to take him back again the following morning, because I wasn't happy with him, he just didn't seem to be any better.
We were due a visit from the Outreach Nurse, that morning and she arrived at 9.30am, attached Michael to her SAT's monitor, took one look at his Sat's of 83 in 1 litre of 02, and rang the hospital to say he was coming back.
When we got back Michael was admitted and gradually over the next 24 hours his SAT's deteriorated and his 02 requirements went through the roof. It is an awful feeling, watching your baby struggling for every breath, with alarms going off, Michael was so sick by this point that he was having 1-1 nursing. The Dr's expressed concerns regarding Michael's condition and that they were not able to provide the level of nursing care that Michael needed so arrangements were made for a transfer to Peadiatric Intensive Care.
We were fortunate that there was a bed available in the same hospital that Michael's lung consultant worked. So arrangements were made for the retrieval team to come and collect him.
While we were waiting for the retrieval team Michael deteriorated twice to the point where the Dr called the crash team from the Intensive Care Unit down to vent him, At one point his heart rate was 4 beats per minute.
When the retrieval team arrived from the other hospital they were amazing, within seconds they had reassured us that Michael was in safe hands.
The Dr in particular was requesting this, that and the other, and then demanding to know why they hadn't been done! Michael was strapped onto a stretcher and taken to the Intensive Care Unit, we were advised to give them half an hour before we ourselves left.
They would be travelling blue light all the way, but did not want us to come across them on the side of the road, we were told that if he deteriorated again they would have to vent him, and if needed would stop and do this on the side of the road.
We stood in the car-park and watched the ambulance leave........just as one of Martin's work colleagues arrived with the usual "what you doing here??" type questions, not that either of us really wanted to answer that one.......we'd just kissed our son good-bye.
All the way to the other hospital I felt sick.....I was taking the journey back into the world of intensive care, and all the memories of that incredibly sick little baby were flooding back.
When we arrived at the hospital we went up to PICU, and sure enough, to us it appeared to be another NICU with bigger beds, and bigger patients too! But all the same familiar machinery was there, the same intensive care "atmosphere". Michael was in a "cot" surrounded by machines and wires, my little pumpkin under a head box in 100% 02. Chest X-rays had been done, bloods taken, and already the treatment had started. Michael had bronchiolitis and pneumonia.
We were offered the opportunity to stay at a unit in the grounds of the hospital, but after a week of very little sleep, all I wanted to do was to go home. I have a lot of faith in this particular hospital, and I knew Michael would be well looked after. So late night came and Martin & I went home exhausted, physically and emotionally.
During the night Michael was re-ventilated, he spent 24 hours back on the vent, before being put back into the head-box, all in all he spent almost a week in PICU, we also learnt just how badly his lungs had been damaged by the vent in NICU, with Dr's talking of both lower lobes extensively damaged and @50% lung capacity.
Once on the road to recovery Michael was transferred on to the ward next door.
The Ward next-door
Michael was moved into his own room in the ward next to PICU, this is a ward that takes children up to the age of two. It is a mixture of single rooms and small bays 3-4 babies. This was to become our home for the next 3 weeks.
During this time Michael became something of a celebrity, amongst the Consultants and their students, it was a regular occurrence to find a group of student Dr's keeping Michael very much entertained.
We took Michael's baby book up to the ward with us and left it by the side of the bed so the student Dr's could look through it. In a way it felt like re-paying some of the kindness that we had been shown.
It was at this point that the words gastrostomy peg were introduced, and the suggestion made that this was the way forward for Michael, given his 02 requirements, given his failure to thrive, it was seen as the way forward, in giving more calories and being able to boost his weight to help his lungs heal, the aim being removal of the oxygen.
Neither of us quite realised what a permanent thing the g-peg would become in our lives.
Surgery was booked and the g-peg fitted, Michael came home 3 days later just before his first birthday.
