Alfie Jake: Recap part two

Just a few more things I was thinking about since I wrote the last recap that I thought would be better in a new post as opposed to adding them to the last post.

Starting with the awful week in the local hospital. We went in for a very quick visit that turned into over a week before we were transfered to Oxford. In that time the main thing was that we were monitored which was a bit of a joke. It involved putting him on monitors and them being in the greater part ignored and us feeling like we were losing our minds.

Doing his own oxygen!

An adult ENT was bought in to see Alfie to check his airway as much as they could, which was limited as they cannot perform procedures that involve sedation on infants under 6 months in Reading. He ascertained that was a certain amount of congestion in what appeared to be a small airway. he suggested a nebuliser and then a 'head box' to try and clear it with moist air. Alfie hated the head box and we had to make the decision to take him out of it as he was hurting himself on it.

His very own sauna.

He also got a terrible tummy upset, we think due to having to change his feeds as we were told there was no facility to make them up ourselves. This weakened him even more and he was appearing more and more sickly. We tried asking people about his tummy but nobody was interested. The room we were put in was tiny and very hot, this was supposed to be to protect a tiny vulnerable baby. What it actually meant was that we could be side lined more easily. The room was dirty and not cleaned properly the whole time we were there, the bathroom never cleaned. The bin which had all our rubbish including his terrible nappies (tummy upset) was only cleaned once a day. How we all didn't end up ill I don't know.

Stuart and I barely left the room and never left Alfie without one of us or one of our mums as it really didn't feel safe, we had to sleep in shifts in the room as we didn't dare both sleep at the same time. By the time we got to Oxford we were totally exhausted. It was a very lonely time in Reading as we only had our Mums visit, this was mainly because we had no idea how long we would be there from day to day so couldn't organise anybody else to visit. Things on this front did improve in Oxford as we knew we would be there a little while and Dad could take time off work to come and friends as mentioned before could visit us if not Alfie always.

The care in Oxford was totally different, monitoring meant actually watching and responding to the monitors all the time and caring for us too. We mentioned his tummy and straight away they took a nappy to test for bugs and try and sort him out. We had a room in the Ronald MacDonald house which was a life saver and we felt we could trust the staff so actually slept for the first time in over a week.

The week in PICU was one of the most awful weeks we have ever spent but also we felt safer as he was in the best care. We spent the whole time waiting for 'that phone call' which thankfully never came. Our days were spent sat by the cot side watching our boy who was at first paralysed then heavily sedated on Morphine. He also had a line in his head, we called this his aerial! He got very puffy and looked nothing like the Alfie we had taken a few short days earlier.

So scary.

Being my little hungry hero he took his first bottle really well after removing his own feeding tube! He then went back up to the ward and was a little slow with a bottle over night as he had the wrong teats. In what at the time thought was a bit overkill the nutritionist and speech and language therapist were called as he had 'trouble' feeding (but afterwards we were grateful that they cared enough to do this)! Beth put him on a 30 minute maximum feed time and with the right teats he never looked back.

During this time we had the wonderful support of our friends, those previously mentioned and others who were unexpected in the sheer level of their help. In this I have to say about our neighbours who have shown themselves to be true friends, Claire and Zach who took such good care of our furry babies and Jude who made us the most wonderful home cooked meal and cakes. We really did discover our true friends. Also appreciated were the almost daily texts from some of mine and Stuarts colleagues.

After a good feed with Grams! Aren't they all?

Relaxing with Daddy.

I kept him breathing like this for 4 hours.

We then had a great week thinking he was improving immensely, almost like he had a had a rest cure in PICU. Unfortunately things took a turn for the worse. We had no preparation for the trachy as it was so sudden. We later found out all the things that we should have been told before it happened, like the crying. Because Jayne, the great respiratory nurse was away we couldn't start our training until 5 days in. Unfortunately this didn't hel pus with the general care, such as feeding with a trachy, nappy changes so as not to hurt him, dressing him and all the other basic care things we needed to do.

Feeding after a trachy, not a problem after all!

Alfie had some problems with the fit of the trachy too, due to his (how to put this politely?) chubbyness. Miss Lennox had to do a small amount of lipo when putting the trachy in! special tubes had to be ordered in to try and get ones that fit.

We then had to live on the ward for a few days so we could do all his care and sleep with him but with nurses on hand. This was to get us home as soon as possible. Reading tried to get us to do another 2 weeks with them but this was SO not happening, we weren't staying over night there again. We got it down to 2 hours in the end!! Coming home as Stuart said was amazing and terrifying. We slept with the light on for a few weeks just in case he went blue in the night.

Unfortunately we had yet more heartache to come. We went out for our first day away from home (just up to my mums) and came home to a phone call saying that our precious Oberon (my child substitute cat) had been run over and killed, we were both devasted.

Oberon, the last picture I took in one of the 1/2 hours we had home.

Thankfully Stuart has been at home with me throughout the transition, neither of us would have coped if he hadn't. The stress of the basic care we have to do is so high. We are getting there but even a bath is very much a 2 person job which then has to be followed by a tape change. Stuart is going back to work next week but thank goodness he has an understanding boss. He will be able to work from home for a while. This will help us both immensely to make the change back to him working.

Bathing with Nana.

I had very few fixed ideas as to what I wanted to do with Alfie but one was to take him swimming from tiny, not happening due to the trachy. Another was to make sure he went abroad from his first year again not happening as we of course had to cancel our holiday which as anybody who knows me hurt like hell!!! Sitting in the market place in Newbury with a cold glass of wine, not quite the same as Antibes :-).

We are hoping to be brave and go to the lovely cottage in Cornwall that we feel so at home in very soon. Just need to inform the local hospitals and work out how to fit several boxes of catheters, 2 suction units and all the other baby stuff into a car that barely take the 3 of us!

We are also learning to cope with peoples 'interest' in Alfie when we are out. The suction unit sounds a little like Concorde taking off, so sat in Nero's with a quiet coffee proves interesting. And the comments people make like one so called friend who rather bluntly asked 'will he always be a neck breather?' As you may know I am a bit of a sensitive soul and find this quite hard. Mind you at the county show one guy nearly fell over his own buggy staring and I just said 'don't stare, ask!' and he just smiled rather sheepishly, so you do learn to adapt. One other thing I have learnt is not to read any of the books about babies because until the trachy goes there is a fair bit he can't do. However as far as we are concerned Alfie is normal little boy who happens to have a tracheostomy.

The last thing is to welcome our latest arrival Myrtle.