Alfie Jake: February 2008

With tube.......

Hello, I know long time no blog.

We have had laptop problems which are on going hence very few new pictures either. We have also been very preoccupied with trying to get Alfie decannulated (tubeless).

First celery stick.

Also there was the little matter of his first Christmas! I know not good enough excuses but they will have to do for now :-).

The training for decannulation was in itself quite exhausting and stressful. It involves blocking the tube for increasingly long periods up to the magic four hours required to get him booked in for a sleep study. You have to bear in mind that by blocking the tube you are removing half his airway. For many weeks this was not happening, he just would not tolerate it at all then we had a small break through and got up to an hour. Unfortunately he then got a cold so we had to hold off for a bit. We also wanted to get through, and enjoy Christmas without any more stress than was neccessary.

So Christmas, two chest infections (which he stayed his sunny self through) and 2 lots of antibiotics later we started the 'training' again. All the while he was using the leak he had round the smaller tube to make a small amount of noise which thrilled us as he had been pretty much soundless except for the trachy crackle for 6 months. In the first week of January there was a major breakthrough and he hit the big 4 hours! Just like that it was done.

This was typically after I had just emailed Jayne (respratory nurse) and his consulatant to say that we were having no luck and it was failing miserably and did they have any advice. Sods law, I think is the phrase you are searching for. We then had a few more goes in differing circumstances, all perfect.

We let them know at the hospital and we got booked in for the sleep study and January 24th was the big day. This involved going in in the mid afternoon to settle in. He was then fed and watered and put down to go to sleep. The monitors were put on him to test the oxygen levels, heart rate, abdominal movement and chest movement. He was tested for 2 hours asleep unblocked, then four hours blocked and then another two unblocked.

The testing started at 10.30pm and a very long night ensued as there was no way both of us were sleeping through this. The hours unblocked were to test his 'normal' before blocking him.

Well we could see very little difference blocked, in fact if anything he was slightly better! Jayne arrived the next morning and looked at it to not be able to spot the blocking and to be told by his very sweet sleep study nurse , Lucy 'mum and dad didn't sleep at all'. Jayne had to apologise for not warning her what we were like!!!

So the consultant duly arrived on rounds with a few flash backs to the Messiah complex we had previously experienced. He went to the computer and I (I would imagine he thought) rather flipantly said he wouldn't be able to spot the block and I swear there was a small intake of breath from the surrounding medics at the cheek of it. He said, a tad paronisingly(?) that he would be able to see it what with all his experience. He then missed the time that Jayne had said in his confidence. He scrolled back and forth, back and forth etc..... then had to ask 'What time was it? (!). Then it was, we better get this tube out then. Oh my goodness!!!!!!!!!!!

An hour later Jayne arrived with the dressing, I cut the tape off and by the time I got around to the other side of the cot it the thing we had spent 6 months avoiding happened, it was gone. AND Alfie was fine, just like that. Jayne then ceremoniously handed my little star the tube and his daddy carried him to the bin where we helped him drop it in. We then spent a few hours in the hospital and fed him to check that he could cope. We took him for a coffee, us not him of course. The strangest thing was that we have religiously carried that unit everywhere we go, upstairs, downstairs into town et al and the tube came out and we set off down the ward with our wonderful tubless boy, got the end of the long corridor and realized, no unit. Just like that, so strange.

Then that was it, home on our own with no safety net. The tube had become normal and safe after all this time, it blocks you suction it, you can't clear it you change it and so on. I never never thought I would say that but it is true. This was more scary than the tube going in in many ways because there is no safety valve and we were totally on our own again, no nurses, no support to speak of the same as coming home with the tube and of course no sleep. It had to be Friday too so nobody even at the end of the phone. I think we were just so exhausted, terrifyed and excited that evening that we all slept.

The following day went well too, one doctor had a little patroninsingly again, not really knowing our strong minded boy said that it may take a while for him to find his voice. Yeah right, this is Alfie!!! Blithering away within minutes and the big lungs his has developed with the tube were put into action on Saturday when he clobbered himself with a toy. Mum nearly dropped him and I nearly lost half my mugs as Stuart almost dropped the lot in shock. His scream has to be heard to be believed considering he didn't and couldn't for so long. He can grizzle and moan too, love him.

Unfortunatley nobody had told us what to expect in terms of breathing and things to look out for as problems so Saturday night was dreadful, he was making alsorts of odd sounds and we didn't sleep all night. Sunday better again but then Monday night was even worse, he seemed to be really struggling and making horrible rattling and whining noises as he breathed that we were panic stricken. I think maybe it was exhaustion, 3 out of 5 nights with little to no sleep and no way of catching up on it. In the cold light of day it didn't seem so bad and we finally got hold of somebody on the ward and all the noises were normal. His nose so little used in 6 months is very dry and has to re moisten. We had been doing all the right thing too, humidifier, olbas oil, calrub on his chest and medised overnight. So all in all we felt much better! We were given a 2 week timeline for success to start with, and told not return any kit for up to 2 months 'just in case'. We have reached the end of the 2 weeks hence posting on here now.

Mentally I had to get through the first week. He was out of PICU and going home then trachyed within a week so I had to get past that. Our wonderful wonderful boy is doing so well at the moment and I have even had a few days alone without panicing :-). Still shattered as we don't get to catch up on lost sleep, Stuart working and me looking after the Beast. One more lost nights sleep in the last week too, not due to Alfie but Myrtle having her big op. A small unhappy cat, stitches and a big collar do not add up to a good night! She insisted on cuddling all night and everytime I drifted she smacked me in the face with the big collar! Oh well.

We felt very alone in the last couple of weeks mainly due to circumstance. Most all of our family and friends have been amazingly supportive yet again, just feel slightly let down by the odd one. As said before this for me almost wasn't something to be looked forward to as the easy fix, it was so totally terrifying that I almost didn't want him to go in. Every little odd noise could be his tongue obstructing him again, a cold could cause him to panic and not breathe, a tantrum could do the same (although he has tested this one and is fine!) There was no MRI or broncoscopy to check it was better, just the one off sleep study and blind faith it seems. At the moment it seems to be working but we still live in fear of it going wrong and not being able to sort it out. I am scared of sleeping sometimes in case my boy is gone in the morning.

But he is not and he is still the absolute joy he always was, so happy and funny and noisy! He makes us laugh so much and I cannot believe how much joy he brings and how much fun he brings to each day. He turns those beautiful eyes on you and grins that heartbreaking grin (which I can never photograph as he saves it for just as the shutter clicks shut!). You will just have to take my word for it!

I promise as the computer gets sorted and I get more time I will post more about our first weeks hols in Cornwall and the trip to France and of course Christmas with pictures.

the first picture tubeless!