I promise I will get round to the post on the lovely week we had last week!
I have had loads of bits and pieces spinning around in my head about the trachy and Alfie and all it has meant to us. When it first happened we thought it was the worst thing imaginable and we were never going to sleep again or go out and about. As it turns out although I still hate it and what it means to Alfie in many ways it has been a blessing. It has meant that Alfie's wonderful loving father has been able to watch his beautiful son grow and develop (albeit from the dining room office station he now has!). I have had my partner by my side for many more months than so many people. It has made us so much stronger.
Knowing that we were only having one child I felt the early months were stolen from us by the hospital stay and that we would never get that back. Everybody told me that in the grand scheme of things it wasn't important. I felt such resentment when they said this, those that had not lost this time and would do it it again with other babies. Now I look at my peachy boy and I see that they are right. I have lost nothing, it is all part of Alfie's life and therefore so important.
We have become so strong (most of the time!) The last week in the hospital when the nurses made us live in Alfie's room and do all his cares seemed so scary at first and I resented them for insisting on doing it but am now so glad they did. We then got used to it and shut the door on the rest of the world and took care of our son. We had been doing all his feeds etc. on our own anyway but now we were bathing him and tape changing him without nurses in the room. We knew they were there if we yelled but we had our boy back. He was also taken off the monitors so we used our senses and our eyes to tell if there was anything wrong rather than unreliable equipment. The only thing we had to still use them for was meds and to get his food from the fridge, health and safety regs as always. The nurses 'babysat' for us on a couple of nights so we could go to our room to eat a meal and mum did a couple of stints so we could go out into Oxford for lunch and shopping. Such a treat after weeks of only seeing the four walls of the hospital. Mind you it was somewhat overwhelming, all those people and no little person with us.
They kindly got us a bed in the room as well as the sofa bed thing so we could sleep together. I have to say the first nights we hardly slept but we did it on our own. We were both exhausted after the trauma of the few weeks we had spent in hospital but didn't dare both sleep to start with. We got up and suctioned him and fed him and changed him all with the door firmly closed. All this seems so normal to most parents but we were starting from scratch, trying to get to know our baby again. The mini retraining session that ward made us do really helped at home. We did sleep in the end but we had to relearn how to pick up on the little sounds and signs that warn you of an awakening. This is bearing in mind he can't cry so you have to be even more attuned to these little sounds. We had unlearnt picking him up and cuddling him in the same way for fear of blocking the tube or knocking it. Cuddles were draped across your lap not snuggled in. We really did have a baptism of fire as he had his first cold with a trachy that week and his grotty tummy because of the antibiotics. The cold meant extra nasty secretions, plugs of grot that block the trachy and thicken it up. (Sorry if any of this is repetitive, bear with me!)I have to say we now all sleep really well just getting up a couple of times a night when you hear that tell tale noise in the tube that says there is a problem on the way.
At first the lack of nursing care at home seemed iniquitous, 9-5 at the end of the phone and the odd weekly pop in to drop off supplies, spare trachys, suction catheters, tapes to hold the tube in and all the cleaning and dressing bits. Bearing in mind that these supplies ostensibly help keep him alive, we can't even totally rely on them to get those for us. They have never fully let us down but we felt we have had to nag on a regular basis. They wouldn't even look at his granuloma! We were also offered continuing care (3 hours a week) which took until this month to come through, we thought this would be a godsend but in the end turned it down! He is my baby and I will care for him, he has a day a week with my mum and Kate baby sitting so Stuart and I go out like any normal parents (as normal as we will ever be), he just needs 2 babysitters that know CPR :-).
The other thing we learnt was not to do too much research as everywhere has its own way of dealing with trachys. The level and type of care, the type of support and advice, the equipment et al. so I stay away from the computer (kind of) and don't compare notes, too frustrating. Also you have to listen to the useful little snippets and you have to filter things. With the monitors it took a long time to realise that they can measure accurately through one tiny pad the oxygen levels in the whole baby but not that he is moving or even in one case that it is now attached to a babies giraffe! The monitors only really work properly when the baby is immobile. The other thing is that 'normal' babies aren't attached to monitors and therefore you don't see that they probably desaturate when they are crying, i.e. only breathing the oxygen out. One of the older more experienced nurses told me this and it made such a difference. Also when you suction a baby you are removing a lot of the air in their lungs and so it goes the oxygen particularly if you are have a hard time with thick secretions. This is why they say to suction for no more than 6-10 seconds at a time and to rest in between. Obviously with a blockage you can't stop until it is gone, but the good thing about no monitors you don't panic so much and rely on yours eyes and ears to see if they are OK. It is all such a steep learning curve and in so many ways we have to be grateful with Alfie that it 'only' the trachy and no other issues.
In so many ways I am happy that we have so little support at home, it means we have our son to ourselves. We rely on the great support that the team at Oxford give us, on hand via the phone, email and if we go up with any troubles. It is hard in so many ways but he is an easy baby (for now) and the end is in sight. Another little set back in the shape of a tummy upset and teething. I have to say that Alfie is also very bright but quite lazy. It is easy to breathe through the tube and not via his nose. if you catch him unawares he does really well but the minute he susses you out he stops breathing until you stop occluding, little love!
Although I am used to the trachy now I have to say I can't wait for it to go, hopefully before the worst of the winter. The cold air down the tube and infections being 2 big problems. We have all had out flu jabs now so that will help I hope. We won't rush anything as we want him to be as safe as possible but we have hit a bit of a disorientating state of limbo for now, half way there but unable to jump that final hurdle. We will all get there, just need patience which I am not renowned for.
He is currently laying on his mat in all his chubby nakedness after yet another yucky nappy (the joys of motherhood) grinning at me whilst experimenting with the odd new sound via his leak and probably thinking of his next feed. He is also trying his latest trick of lifting his legs and slamming them down as hard as he can. This is hard, he has caught my toes before now and it blooming well hurts! Tough lad that he is. We are awaiting his Grams to babysit us both as Dad has gone into the office today.
A little while later and Grams and I have tape changed and he is in the travel cot having been asleep but now grinning madly and swinging it back and forth. Legs lifting in the air and farting for England he and we are quite happy.
The other big thing about the Grams babysitting stint is me having bathroom privileges! Sounds daft I know but once a week I get to try and relax in a long shower or bath and wash my hair and paint my toenails, pluck and primp and preen. So I now have clean hair, two eyebrows rather than one, painted toe nails, fingernails filed (very important to keep them short in order to change his tapes safely and put creams on)legs etc. shaved or plucked with the evil machine. As I say this sounds rather silly to need special time for. Its the noise and distraction that are the problem, my hair takes more than 20 minutes to wash and I can't hear him in that time and you can't see him like you can in the bath. Mind you I try and relax and to enjoy the 'me' time, but I can't switch off. I always have one ear on the door in case there is a problem.
He is also a long way to sitting on his own, the weight of his chubby bum holding him down no doubt. Again sorry for any repetition and I will be back shortly with the big week, pics and all.
The Bog of Doom 
....and it used to be so clean!
