Yet another scare!

Well last night he did it again! I was giving him his late night feed ready for bed (sensing a pattern here?) and he startled, then started to cry and cry and cry all the while only taking breath in. He went deep red and then onto purple and almost black and went rigid and disorientated. I had already checked his tube which was fine. I couldn't do anything to make him breath, I cleared his mouth, blew in his face (nurses advice for breath holding) and finally called for his dad when I reached full panic mode.



I couldn't believe he had done it again in the same week. By the time his dad got downstairs, almost head first he was ok again and ready to finish his bottle! I was terrified, I rang and left a message for Dr Hull and then emailed him to see if it was possible to meet him when we came in for Alfies renal scan today to discuss what had happened. He mailed me back as soon as he got in and said that I had done everything right and that it would appear to be his breath holding tendancy rearing its head again. (google 'blue baby breath holding'). I was so worried that it would put his decannulation on hold but apparently again it is nothing to do with the trachy and he is quite happy to go ahead with the plan. We of course don't want it to come out too soon and make things worse.

Yet again Alfie had proven to be quite unusual in that he can occlude even with the tube.

By the way, just to clarify he has to go for regular renal scan to check for tumors on his kidneys, a potential side effect of the Beckwiths. He will have to have these scans every 3-4 months until he is 7 years old. We also have to palpate his belly to make sure nothing is apparent in there.

So we have had the 'big blue' that landed him in PICU, a number of little ones, the trachy, the nights of suctioning and panicking that you have blocked the tube with solid secretions where you have dragged them up from the end and us having to make judgement calls at 4am on our own about how to manage it potentially blocking again. whether just to keep suctioning or use saline or to change the tube. Then he chokes in the cafe and has the crash team out again and to top it off he has reatarted the breath holding to put the wind up us. If nothing else he is making us resourceful!

I seem to have put alot in in one go, but with everything else I don't have huge amount of time to update the blog so when I do you get it all in one hit! I still have to post all the other things we have been up to this week.