Good news, bad news, good news!

The Beast realaxing with his baby.

This post was supposed to just be able to give good news from our appointment in Oxford yesterday.

We went to see Dr Hull who is the respiratory paediatric consultant that was involved with giving Alfie his trachy, at one stage he was known as 'he who cannot be named' after one particularly horrible day. Then we realised he must have been having a bad day too (not an excuse) and since then he has been really good. He hadn't seen The Beast since just after we left the hospital to go home and was impressed with his size (isn't everyone?)! We were hoping it was going to be a positive meeting, but not anywhere near to the extent it was.

We told him about the fact that Alfie wasn't having the blue episodes anymore and that his large tongue looks normal now. Also the key point that turned out to be his ability to eat! The fact that he has taken to solids with no problems from his tongue was a huge step forward. So much to our surprise he started talking decanulation (removing the tube).

Alfie doing what he does best.

This was to start with us downsizing the tube to give him more of a leak so he can start trying to breath through his nose again and then us blocking it off for a very short time periodically to see what happened. If this goes well he will then go in for a sleep study with the tube blocked and then possibly removed. We knew all of this as a protocol but had no idea of timescales. Then the big one, we were to downsize the tube at his next tube change!!!!! So he could be without the trachy before Christmas if it goes according to plan.

The gorgeous neck I may see naked soon for the first time in months.

This was amazing news and we were both thrilled to bits and headed down to the cafe to give him his fruit and juice and have a coffee to celebrate. Since he had the style of his trachy changed a few weeks ago he has had a lot more secretions that were beginning to make him cough a lot and really distress him. The Kapitex tube had an outside diameter of 5mm but the Shiley had one of 5.2mm and amazingly that was enough to cause huge problems. I do have to say though that the Shiley was much better now in many other ways.

So Stuart started to give him juice then the fruit and he started coughing really badly so we suctioned him as we have been having to do so often recently particularly when he is eating. He then started crying and as I watched he started to change colour. He was going blue and couldn't catch his breath.

Holding him I could see his colour changing by the second, I could feel the panic rising as I was thinking, no, not now things seem to be going so well. My brain finally kicked back in as I tried to clear what seemed to be the problem.

Stuart tried to clear his mouth but nothing happened, he just kept going more blue. All I could focus on was that there were patches of red on his face so some oxygen was getting through although very little. Next came suctioning again and that had no effect and it dawned on us that we were going to have to do an emergency tube change. So out came the little kit that we have obsessively carried with us since he had the trachy put in. It contains a 3.5 tube (his normal size), a 3.0 tube in case you can't get that in, a suction catheter to use as a tube if you have to, a pair a scissors to cut the tapes off, a syringe and saline to wash it out if you need to and an adapter to be able to administer breaths if necessary.

Stuart managed to get tapes open and I, who cannot do the normal tube change and close my eyes when Stuart bravely does it, took out his tube and put in the new one, this didn't work so I changed it again (afterwards I wasn't sure why as I had no problem inserting the 3.5). When I did this I could feel air moving in and out but his colour wasn't coming back up so something was still causing a blockage (in retrospect it could have been his sheer panic). I then tried clearing his mouth again while Stuart held onto him for dear life. By this time somebody was trying to get help and Naomi a physio who happened to treat him in PICU came past on her way out to go home. She took over suctioning while I secured the tapes and a crash call went out again. The poor girl, it was the second situation she had been involved in like that that day! After we realised we weren't going to lose him (which felt like a very distinct possibility) all I could think was this was adding months to the trachy and that he would get kept in and we wouldn't be allowed home.

The strangest thing throughout all of this was the lack of any big event to indicate that the problem had cleared. Whenever you see someone choking on TV there is always a monumental explosion of air as the blockage.....usually an olive....why is that?? clears and the person starts to breath again. As far as I can recall in Alfie's case he just seemed to be ok'ish and start to breath regularly again.

The team were very reassuring and praised our quick thinking and the way we dealt with the emergency tube change. By the time they had all arrived in the coffee shop Alfie was sat on Stuarts lap looking a little pale but grinning like a loon at all these people there just to see him! His father however was sat shaking like a leaf and his mother was obsessively tidying up the mess we had made (it's a control thing!). They put a bit of oxygen on him but he didn't really need it and then they said the dreaded words, 'we will take you up to the ward for observation'! I panicked but they promised we wouldn't be in more than a couple of hours. While we were sat with him on yet another ward Dr Hull walked past looking quizzical, on his way home. We explained what had happened and that it had never happened before so he said to go home. He also noticed that Alfie already sounded clearer with the smaller tube which was reassuring.

The grin bestowed on the crash team.

The general conclusion from all the doctors was that is was unfortunate but a standard (if there is any such thing) choking incident. It felt anything but standard to us, we thought, again that we were going to lose our little boy. It seemed to have nothing to do with his condition or the trachy, apart from that making him cough so much he choked. It did test our CPR skills and our nerve. It was almost as though he thought, I have done the blue bit to Mummy so I will try Daddy out for size! It was truly terrifying to see and experience and in many ways thank goodness he did it in the hospital if only for the reassurance they gave us.

Next time he chooses to share his experiences, I'll be having a quiet word. Well be fair, only his Mum gave birth, so I'm more than happy being an experience or two down. Flipancy aside it was a terrifying experience that I hope never to go through again, however if the worst does happen I know that we can cope.

The big positive that came out of it that he is downsized! And coping well and needing far less suctioning too. The big change is that he can scream (in his own particular but very audible way). We are still very shaken and I am certainly having moments of sheer panic and seeing blue where it isn't. Stuart valiantly 'went to work' when all he wanted to do was protect me and his boy after nearly losing him again and I do hope that he is appreciated in the circumstances as much as he appreciates what they have done for him.

The hand that holds my heart in its palm.

So in conclusion he is fine and we may be looking at weeks rather than months to have our little man whole again. So exciting but now doubly terrifying. We keep being tested and I hope are passing with flying colours. But please whomever and whatever controls these things, enough now!

My boys the day after our big trauma.