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Earlier this evening Danny had another apnia, this time because the CPAP machine wouldn’t start working right.  At the time it happened he had a few visitors so obviously he was just playing up for the crowd.

The doctors have put Daniel onto a new medication called “donperidon” which sounds more like an expensive drink than a medicine, the idea is that this will help to prevent him getting as sick pre & post feed.  This seems to be starting to help as he has not been as sick today, although he was sick first thing this morning and once again when I got there.  I’m beginning to get a bit of a complex as all he seems to do these days is be sick on me!!  On the flip side Julie is really starting to look tired though she did manage to get a little sleep last night I can see that she is just in need of one good night’s sleep.  I have taken to blogging using Microsoft Windows Live Writer, a nice little application that seems to do the job nicely.  One feature that it does have is a map link so that you can insert maps into your blog entry, so here it is an ariel photograph of Julie’s new home…..the maternity unit.

Julie’s Home

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.

Julie has just called me to let me know the ward has just called to let her know that Danny has just had another apnia, basically he has stopped breathing and they have needed to “tom thumb” him back. I’m waiting to hear what exactly happened.

All afternoon Danny has been really chilled out just sleeping on me. Julie and Tom went up to the room for a sleep so Danny and me got a little time on our own. Ironically enough, when he was asleep I was awake and when he woke up I started dozing!?

We spoke with the doctor and he explained what had happened to his food pipe as a result of the balloon and how this had affected the reflux problem. He also explained how the acid was coming back up and causing his food pipe to bleed as it is not supposed to handle stomach acid. He explained that there are three options; one is to change him back to feeds every 4hrs with gaviscon for now and to stop the gaviscon if he doesn’t improve. The second will be to have another contrast done if he doesnt improve and then feed another NJ tube through at the same time to his intestines. The third option, which is not being considered at present, would be to use part of the stomach to tighten the food pipe opening to limit reflux.

We were asked for our thoughts abd we have asked that they contact Mr Patell, the surgeon at Kings College in London, to get his input as this is the first baby that nottingham has had with a tracheal occlusion. The biggest fear now is that they really dont know what to do next and it just feels as though we are just running around in circles, as though the same things are being tried over and over and getting the same results.

On ward rounds the doctor said that he wants to speak with Julie and myself to discuss daniels progress. Basically this is because we are going round in circles and they want to formulate a plan. I know it isn’t the case, or I hope not, but it feels like they want us to tell them what to do. It is so frustrating to be here looking at our boy who looks so perfect but know he can’t manage without all this help.

It seem that at the minute each feed that is given to Danny causes him a lot of pain, this happens from the moment the milk hits his stomach. At one point this afternoon he was in so much pain that it drove Jules to tears, once I’d settled her down I went to speak to to the nurse who was looking after him. I told her that it seemed cruel to keep forcing him to feed when he was really in pain each time food was given, she agreed and went to speak to the doctor. He then came to speak to me so I explained to him the same as I had already to he went off to consult the surgeons to see what thay wanted to do. When he returned he told the nurse that he should be given smaller feeds every 1hr instead of every 2hrs…..did he not hear what I told him?! The nurse said to him that the problem was that as soon as the feed hit his stomach he was in pain, so he then decided to stop the next 2 feeds and re-asses him again later on. So much for listening

Since we got down this morning Danny has been struggling to maintain his oxygen levels.the nurses have been unable to give any reason as yet but they just keep dropping to around 84% before he starts to come back up. This is not in character for Dan as the only time he drops is usually when he’s either throwing a strop or being sick. Ward rounds should be here shortly so we’ll see whats said when they get here.

Phoned down to the unit to see what kind of night danny had and they said that he’d been quite settled and that he was busy trying to punch the doctor who was looking at him as he’s not happy about still being on CPAP. The nurse compared it to when in scooby doo, scrappy was trying to get the bad guy and scooby was stood on his tail.