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Seems that tom really gave Julies brother a run for his money as he got them all up at half 5 this morning!! Just after lunch today we collected kyle & bridie as it was bridies birthday on friday….happy birthday brides. We then made our way over to collect tom. Next stop was home to get the kids sorted, let Bridie open her presents and of course blow the candles on the cake. Then it was back to hospital to see what danny had been up to while we were away, he’d been very settled and once the staff changeover was finished we were off again, this time to take the kids to their nan & grandads, my mum an dad’s. Bridie of course was in her element as she was given evan more presents to open, and evan more so when she was asked if she wanted to stay at my sisters, auntie wendy, which needless to say she did. So when we finally got Tom settled, reluctantly I may add, we dropped Bridie off at my sisters then off back to the hospital again.

Throughout yesterday Daniel had improved, his oxygen requirenents were lower than it had been of late and he was generally a lot more settle. We popped out at teatime to collect Tom from nursery and drop him of at Julie’s brothers, Uncle Daz and aunty Denise’s. When got back we noticed that his head was bobbing which meant he was breathing himself which we didn’t think he should have been doing. Later in the evening he had a nasty turn. It started with his oxygen sats going down and they continued to go down evan while on 100% oxygen. They decided to tom thumb him to bring him back up but he was very very slow to come back. All we could do was just stare on helplessly watch as they tried to stabalise him again. This went on for almost 20 mins before he finally started to become more stable and was put back on the ventilator. It wasn’t long before he started again all the time his blood pressure and heart rate was coming down much lower than had been all day. So they went back to tom thumbing all the time we looked on helpless with no-one telling us anything or evan acknowledging that we were there. The doctor asked that the consultant be called, this was the man I spoke with regarding Daniels operation. When he arrived they had finished tom thumbing him but he was not improving, he told them that they needed to muscle relax him as his attempts to breathe during the evening had been the main cause and should be prevented for a while. Once he’d had the medication he then took the time to explain to us what had been happening and what he believed had been the cause of the problem. He really took the time to explain and listen to us despite being called out at midnight which we were really grateful for as for the last two hours we had been left in the dark. Throughtout the rest of the night he was very settled as he is now muscle relaxed before anything is done to him which has really helped.

after a great deal of hard work from the doctors and nursing staff on the unit they have been able to get Daniel a little more stable than yesterday. This is not to say that he is better by any stretch of the imagination but he’s a little more settled. Because he is poorly he’s started to build up some fluid around his body mainly in his left eyelid but this we are assured is normal. The results of the culture came back today and showed that the pneumonia was cause by a bug that grows in the gut. The theory is that at some point when he’d been sick some of it has gone into the lung and developed into pneumonia making very poorly.
Daniel’s surgeon came to see him today and said that because he has become so ill he felt that this was Daniel’s way of telling him he needs to do the major stomach operation. This involves using part of his stomach to contract the food pipe at the point it enters the stomach to restrict the reflux. Due to this being such a major operation they want to do this at the other hospital, which as we explained we do not want him to go to especially Jules.
When I got back from work and heard this I spoke with one of the doctors who was really helpful and understand (if you ever read this you will know this is you and thank you). He took a great deal of time to listen to the reasons why we dont want Danny to go and helped me to understand the reasons why it was necessary that it should be done there. From our perspective there should be not reason why this operation cannot be done here as they have done his last two here. He explained the with this being a major operation, much more than last two, the equipment required to do this is much greater. It would also mean that if assistance is required there will be other surgeons around if needed as they are all based there. However he was also very understanding of our needs and wishes and said that they would work with us to find some common ground that would ensure that Daniel’s needs are met and our wishes are adhered to. He also said that it is unlikely that and operation would be don’t for upto 2 weeks until he has recovered from the infection, so now we have to think about things over the next week.

Well tom’s been busy working Julie’s cousin Fred. As we understand it Tom’s managed to do his normal trick of wrapping them round his little finger. Following Fred’s offer to keep Tom there tonight so I can stay with Daniel & Julie tonight we decided to take him up on it. Just means that I’ll need to get up early to pick him up and take him to nursery before going off to a job in Nottingham.

If the next few entries have any spelling mistake (I know they usually do!), or only make half sense I apologise. Doing this off a mobile phones not easy!!! Just trying to keep everyone posted

This has to be hardest thing I have ever gone through in my life. The extreem emotions that you experience are nothing short of exhausting. There are some days when Danny is doing really well needing very little help and there are others that are not so good. But of all these highs and lows, I thought that the lows couldn’t get any worse but I was wrong. The sample that was taken from him earlier today shows he has a form of pneumonia which is really hurting him. His heart rate has been extreemly high, his oxygen sats have been dropping but have improved a little after being ventilated. When i arrived this evening it was like we were right back where we started back in July. Due to the drugs he is not moving and the ventilator is doing all of the breathing for him as hes to sick to do it himself. The moment i saw him my heart sank to the pit of my stomach and while i was with him i could feel the emotion building. After about half hour I had to walk away for a break but on the way i saw Julie in the corridor. As soon as she asked if i was alright that was it, i just started to cry. I vowed i would not get upset around Jules as I was trying to give her strength through me somehow. I’m really annoyed with myself for doing it although she said that it was ok and was nice to see some emotion rather than being “a rock”. Nothing nor no-one can prepare you emotionally for this type situation; sitting helpless while you watch your childs life hang in the balance knowing that there isn’t a damn thing you can do to help. So here we are; watching, waiting and praying that he can ride this through because right now we are both terrified that he may not.

Daniel is really a very, very poorly boy tonight. So Tom is off to Julie’s cousin, Uncle Fred, for the night and I’m off to the hospital to stay there. We don’t know what is going to happen yet and only time will tell but he is really a very sick little boy.

Julie has just called to say that Danny’s had to be ventilated as it has become too hard for him to keep his sats up because of the infection. Needless to say we are both completely gutted and Jules is really taking it hard.

It seems I’ve gotten a little behind with my blogging recently so my apologies, will try to keep a little more up-to-date.  The call was made by the surgeons at Nottingham to London and the they said that they’d only had on baby previously that suffered from a floppy airway, however they said that it “grew” out of it but their feelings were the same regarding inserting a feeding Tube as he needs to start getting nutrients from milk now.  Throughout Monday Danny had pretty much slept the whole day and when he was awake his eyes were rolling cause he was so tired.  At 3am on Tuesday morning Julie rang to tell me that they had called up to her room to tell her he’d had another apnia.  As you can imagine Julie was really distraught but she went off to the unit to see what was happening.  When she got back again at about 4am she called me again to say he’d had it while they were doing a blood gas, something which doesn’t normally upset him that much.  At 7.30 I got a text to say that Daniels CRP score was 61, this is his pain score, which meant something wasn’t right with him.  The decided to do a full septic screen to see what was wrong with him and also do an X-Ray to check his lungs, once again he had apnia’s while they were doing both of these.  The X-Ray showed a shadow on his left lung which means one of two things; either he has a chest infecttion or some milk has gone back into his lungs during reflux.  As a result they now have him on three different antibotics to try and combat the source of the infection.  This meant that throughout yesterday he was really unwell, his oxygen requirements were a lot higher than normal, 25-40%, more than usual.  At one point his oxygen sats were down as low as 29%.  His heart rate was also a lot higher than usual as his resting rate is now around 110 but throughout the day it has been between 190-209 and his respiration (breaths per minute) was up from 60 to between 90-110.  HIs was so upset with it, he just kept crying and getting really worked up dispite by mine and Julies best efforts it was clear he was suffering.  Later on we spoke with the doctor to see what the long term effects of all of this was going to be.  He told us that the apnia’s would not cause and damage to brain as he is old enough now for his body to regulate blood flow so when his sats go down the blood is directly to the key areas of the body such as heart and brain.  He also explained in some depth what apnia’s are and what causes them, basically in Daniels case because he is really poorly the area of the brain that tells his body to breath gets “distracted” when he gets upset.  As a result he stops breathing but his heart is still beating, allbeit slower, this why bagging him encourages him to remember to breathe.  However, this is a far from desirable position so if it continues they may consider re-ventilating him but he said it should not be considered a step back as he has proved he can hold his own so it would be just to give him help while he’s very poorly.  By the time evening came it became clear that he was still unsettled so Julie decided that she would spend the night next to his bed as she may be able to prevent him having another apnia by helping to settle him.  However, at around 1am he had another episode when she was changing his nappy.  The are looking at the possibility of re-ventilating him to try to give him more support while he is sick and to stop these episodes but obviously this is not what we want for him.  So right now the future is completely uncertain, but we are told that the antibotics should start to work in a couple of days and he should start to pick up again.  Lets keep fingers crossed x

Monday was Tom’s day for going to Julie’s Aunty, or as Tom calls her Nan Nan Sue.  That boy has talent, I mean he really does, he’s really learnt how to work Sue for what he wants.  He knows that if he doesn’t eat his dinner then rather than see him hungry Sue will let him have some crisps or other sundries but Tom was in for a real shock today.  We told Sue that if he doesn’t eat dinner then he doesn’t get anything else as he’s just junking out.  As stressed out as Sue was she did it bless her and he didn’t eat all day until I got him home.  However, yesterday when he went there again he threw a strop when he asked for crisps and was once again told no, but when lunch time he eat his dinner some mashed spuds and other stuff then later on had some jam on toast which really pleased Sue as his eating really does worry her.  As I said to her before, he’ll never starve himself his just trying to work it.  Nice one Sue.