Whats new

After feeling somewhat dispondant after yesterdays events with the surgeons I was hopeful that today would improve after arrangements had been made to meet with them this afternoon.  I had rearrange my afternoon to ensure I could be there so it was in the hands of the registrar that I spoke with yesterday to organise it.  By the time 3pm came Jules thought that she’d better prod them as nothing seemed to be happening.  It was at this point they chased it up and said that he would not be coming today as he was on call but he would be here tomorrow morning at 8.45.  At this Jules flipped and said that our whole life does not revolve around the surgeons and after having organised work and childcare around them on Monday and them turning up at a different time all together, then again working around them Today, now having to work around them again tomorrow was taking the you-know-what.  This is just a blatent lack of consideration for us in all of this and it’s just completly unacceptable to be in a such a stressful situation and then having to deal with this is just not on; play the game and try to consider us for just a minute.  Anyhow, it looks like were moving hospital tomorrow ready for his operation on Thursday so lets just wait and see what happens.

Next we have a date for the diary, for those of you that already know and now for those that do not; the documentry which Daniel is featured in is “Birthnight….Live” and is on Channel Five 8th October.  We are told it is 8pm – 10pm; Angie, the assistant producer understands that it is 8pm – 10pm but the TV guide on the telly at home says 9pm – 11pm so we’ll check it out and let you know.  We’re featured for around 10 mins and we may be appearing on the live show on the night so keep ‘em peeled.

Also the photo’s an old one cause I’ve not been able to get many snaps of late as we’ve been a little distracted and since the sites looking a little bare I though I should get a photo back up there.

Since Sunday night Tom’s been staying at Julie’s sisters, Aunty Rita’s, overnight and he’s having a right old time. Still been off to Nana Sue’s on Monday & Tuesday but then we’ll collect him spend some time together then back to Aunty Rita’s at night. It’s working really well for Tom as he is just really settled when he’s there it just makes it a little easier leaving him.

Farewell Laura

Twas a sad today as the neonatal unit said a fond farewell to Laura.  To give a little history, well I say a little there’s a lot of history for Laura and Daniel.  She has been one of the more frequent carers for Daniel, as I understand it whenever she is on she requests him.  It seems she will be emigrating to Australia shortly, the lull of Oz was just too much for one person to cope with.  But that said she has told us that she will be coming back to see him Danny before she goes as he has promised her a cuddle and she will get it…..good on you.  It is with a heavy heart we bid you fareware, never goodbye, and wish you all of the best and thank you so much for all you have done for Daniel. Good luck Laura, I am sure you will see this soon.

Trouble ahead

Yesterday saw Daniel taken off the ventilator in the morning only to be returned back to it again after 12hrs. This was due to him not being able to cope with it as he is really only just starting to come out from all of the infections that he has had. While he was off it he also had a large vomit of old blood which is believed to have been due to his stomach bleeding. This is thought to be on account of him not being fed for a while as well as the excess acid that he gets. By the end of the day he was just plain knackered and it was a great relief to see him returned to the ventilator where he could just rest which is what he really needs. However, today brought us the surgeons. They were due to come over to see us between 5 – 6pm, so I arranged for Tom to stay at Sue’s so I could go and see what they had to say. At 3pm I got a call from Jules to say the surgeon was there to see us but obviously I couldn’t go as I was working, so she had to meet with them alone.
She called me a little later to say that they wanted to do the jejunoscopy which would mean a tube inserted surgically into his intestine allowing them to feed past his stomach. They want to do this as he is currently suffering from liver disease as he is not feeding on milk but is getting all his nutrients from the TPN. They told her that the plan is to take him over to the other hospital tomorrow and do the operation on Thursday and that he would be there for 7 – 10 days. At this Julie burst into tears as we have told them that we don’t want him to go but if he must then it should be for the minimum time possible, these feelings seem to have been ignored in all of this. When I got to the hospital later on the people I needed to speak to had left for the say so I spoke with the registrar and expressed our concerns and told him that we felt our wishes were being ignored in all of this. Now we do understand that Danny needs this operation, we also want him to have it but it just feels like we are unwanted baggage that to be quite frank is being ignored. This is not the way you want to feel when you have all of this to deal with. Suffice as to say the registrar is going to arrange for us both to speak to the surgeons tomorrow and I will also be contact London to get their thoughts.

Wakey wakey

Yesterday was another good day for danny. He spent much of it awake just staring off into space which probably meant he’s still coming down off his medication. They have decided that they are going to try and extrabate him today, which basically means they are going to try and take him off the ventilator and back on CPAP. We are dreading it as they have also resumed his feed, which we were ok with as if he’s sick it can’t go into his lungs again because of the ventilator tube. Now if they’re taking him off that we run the risk of this happening all over again and am not sure if we can really cope especially Jules as it has really taken it out of her. Tom stayed with us at the hospital on friday night which meant we got hardly any sleep thanks to Toms kicks in the head etc but last night him, kyle & bridie went of to Nan’s, my mums, and in the end kyle & bridie decided to stay at auntie wendy’s, my sister.

Update

well another day has passed, so what do we know? Well the first thing we know is that the doctors took another lumber punch today which, after examination, said that preliminary impressions are that the fluid is clear now which would mean that the meningitis had cleared. While this still needs to be confirmed by the lab it does help give a little hope. We also know that from the sample taken on Tuesday they have not been able to grow anything. What this means is that he did have meningitis but because of all the antibiotics in his system, as soon as it developed they homed straight in on it. It remains to be seen if it has done him any harm but only time will tell on that. He’s really quite chilled today but he is still ventilated but now he’s doing the work and its just there to help. With plenty of stuff coming off his chest and all the other stuff today we find ourselves daring to hope that we finally turning a corner……maybe.

Glimmer of hope

Just received a call from Julie to say that they have done another lumber punch on Daniel and preliminarily it looks clear and there are not white cell present. While this is preliminary it would suggest that the meningitis has cleared but we will have to wait until it has been through the labs to be sure. We will also have to wait and see if it has done any damage but this is the first hope we have had in a while.

No news is good news…..isn’t it??

So whats happened since the last posting. To be honest, not much really. Since they did the lumber punch the labs have been growing a sample to identify what strain of meningitis he has but they have yet to come back to us (should have been this afternoon). In the mean time we are assured that Tomas, Kyle, Bridie or anyone else is at risk as the one that he has is not the contagious one. Tomas has spent the week at uncle Fred’s which has meant he has been sleeping there overnight and then off to Nana Sue on Monday & Tuesday daytime, back to freds at night. Nursery on Wednesday, Richard took him Thursday and he off to nursery again in the morning. Thanks to Fred having Tom so much I have been able to spend time with Daniel and try to help out Jules where possible while still working in the day, not an easy act to perform but it is possible…..just. As for Daniel, well he seems a little better in himself today. They have stopped his muscle relaxant which means that while still ventilated he is doing the breathing himself the ventilator is just “helping” a little where needed. He’s developed a rash on his face as well today but they are not too sure what it is but are not unduly concerned. So what next…..we wait, and wait until finally we get more answers. This is the hardest part as we don’t yet know what variation of meningitis he has nor what long term effects it will have. We do know that it can cause blindness, brain damage plus many other things but it will take time before we can see what long term damage it has done to him. So once again we wait patiently, hoping that something may someday go our way for Danny’s sake.

Devasted

Devasted is the only word to describe us right now. Daniel currently is fighting off pneumonia, a blood infection and some other bug. Now we have just been told that following his lumber punch earlier today they found white blood cells in the liquid. Although they will have to wait 48hrs for the culture to grow it most likely means he has meningitis. As I look around pieces of the world are just dropping down. I find myself asking what has he done to deserve this, what have we done. Sorry for the short message but this is all I can manage.

Not such a good night

I just came back to find Danny having another episode. They had just moved him to try and get the retained fluid that is making him really puffy to move around by changing sides and he de-saturated. They ended up tom thumbing him for quite a while before he would settle. He’s now back on the vent at 72% oxygen.

Stumbling along

After friday nights episode yesterday was a great improvement. Daniel was really settle and his oxygen requirements continued to decrease throughout the day which reached an all time low of 38%. Since he was in 100% on friday night this was a massive improvement. During the night he continued to be really settled.
When moring came though things changed once again, he was once again really unsettled and they could not seem to get his secretions under control no matter what was done. His oxygen requirments continued to climb, then by mid morning he was back to needing 100% oxygen but was only managing to hold around 84% saturations (should be round the 92% mark). After much struggling they managed to get his requirements down to 76% oxygen but this was still too much really. As soon as he is touched his sats drop dramatically and, on occasion, needs tom thumbing. He has now been given atricuin, a muscle relaxant, by infusion which should help to keep him relaxed so that the ventilator can work for him and stop him working against him. So once again thing have not improved and he is still really very poorly.