More worries

It turns out that following Danny’s apnia last night he did the same again later on during the night. The second time he did it he was having his nappy changed when the CPAP decided to dump a load of water down his nose and needless to say he didn’t like it, as a result he stopped breathing. During today he’s been more settled but we’re not letting him fool us into thinking he’ll behave as we know better. The film crew have been up again today doing more interviews with us and with the doctors, this may well have been the last shoot before the show goes out. Some of the questions that they ask have to be asked but they are difficult as the answer seems so obvious to us. As an example we were asked “what options we were given when we first went to london and do we still feel we made the right choice”, the options were wait and hope for the best; termination or take the balloon treatment. We obviously chose the balloon as we could not wait and see as he only had a 10% chance of surviving; we couldn’t have a termination as apart from the diaphragmatic hernia he was fine so we had to give him the best chance. And as regards to whether we would have done anything different……absolutely not, despite the emotional turmoil, the stress, heartache, worry, despite all of this we would still have done what we did. When you look at him and how beautiful he is, when he looks at you as if he knows and understands all of it you just know that what we did was right.

About an hour ago I spoke to Julie and she was completely exhausted as she has not been sleeping because of Danny having his apnia’s, she’ll just lye there at night waiting for the phone to ring and them tell her that he’s done it again or, as I learnt today, she dreads the call saying that they couldn’t get him back. She has tried asking the midwives for something to help her sleep, in fact she asked 3 weeks ago but they didn’t come back and she didn’t persue it, however when she went to them today they told her that as he’s older than 30days that she is no longer under their care. As such she needs to visit her GP which is not a simple thing when your doctors is 12 miles away, you don’t drive and your partner is at work. Still we will have to work something out as she’s at her wits end now and there’s nothing I can do.