Friday, 29 February 2008

29Feb08 - Adeus Portimao

Lucy treated me by sleeping all night except my twisted body clock kept waking me up every couple of hours to check that she was alright. Lucy had her final antibiotics in the morning and it was a great feeling knowing that she no longer need a cannula.The Doctor came to see us at 10 o'clock and as expected decided to sign our realease papers. He said he could still hear a slight noise in her chest but it was slight, not enough to stop us going home. We will have to continue giving Lucy a Ventolin inhaler every 6 hours over the weekend before we take her for a check up at our local GP on Monday. The first thing I did after speaking to the Doctor was phone the insurance company. I knew that time was precious as Monarch airlines were standing by with a sky chair in Manchester waiting for a call before 1pm to say that we were booked on the 18:45 out of Faro. The insurance company had arranged a call with the Doctor at 11am so I tried to hurry things along. They assured me that they would chase it up as soon as possible and ring me back. I gave them until 12 noon before ringing back. I could not believe it when the man in Barcelona (international call centre) told me that they hadn't even spoken to the Doctor in Portimao yet. Our chances of getting a Friday flight home were slipping away. After "politely" stressing my concern at there lack of urgency, suddenly they confirmed that they had received word from Portimao that Lucy was fit to travel. However the man in Barcelona then started explaining that usually to make arrangements for someone with Lucy's needs can take up to 3 or 4 days. At this point I was not myself. I told him not too impolitely to phone the contact at Monarch that I had given him and provided he did it immediately we would be on the flight today. It worked because 10 minutes later he phoned back to confirm our full names and birth dates. 10 minutes after that he phoned and confirmed we were booked on the flight and everything was being taken care of by Monarch. I cannot thank Monarch enough because without them I am pretty sure we would still be in Portugal. Karen Doran from the Monarch special needs department phoned to tell me that she had spoken to the flight crew and also to the staff at the check in desk at Faro. They would all be expecting Lucy and all we had to do was turn up at the airport. She had thought of everything and arranged it all in the space of half an hour, absolutely amazing! After feeding Lucy we said our good byes and headed off to Faro airport with our Portugese discharge letter.At the check in desk we were ushered into the special(non-queue) lane where we were told that we were two weeks late but they were happy to see us. I sailed through security control and had time to feed, medicine and change Lucy before making our way to the gate. At the gate there were people waiting for us and we went straight through to be boarded via a special lift before all the other passengers got on.I felt really spoilt that we were in such good hands. The cabin crew were really helpful at both ends. Monarch and especially the special needs department really saved the day for us!Lucy slept all the way home which made it a really easy journey for me and gave me time to reflect on a forgettable couple of weeks.I am sure it won't be our last visit to hospital with Lucy and most probably our time in Portimao won't be our worst experience. These episodes have become part of our lives and are not wholly unexpected. We are not going to let the fear of hospital visits dissuade us from trying to lead as normal a life as possible. We could wrap Lucy up in cotton wool and keep her indoors but that would do more harm than good. What kind of life would that be for her anyway? We accept that Lucy is more vulnerable to many nasty things but to quote the film "Train Spotting", for Lucy we "CHOOSE LIFE"!

Thursday, 28 February 2008

28Feb08 - Portimao Day 16

Lucy continues to do well but unfortunately she will not be discharged until tomorrow morning at the latest. The doctor also will not confirm Lucy's discharge to the insurance company until tomorrow morning. The chances of making the 19:00 flight out of Faro tomorrow are starting to look minimal. We have had some issues with the insurance company as they have failed to appreciate Lucy's needs with regard to flying. Having tried to find airlines that can accomodate Lucy with a suitable air chair on several occassions in the past we know that there are only two possible options, Thomas Cook and Monarch. The insurance company thought they could just borrow a five point harness from some other airline and use that, which would be completely insufficient. Dawn has had many dealings with Monarch in the past and has built up an excellent relationship with one of the ladies that works in the special needs department. Monarch offered to provide a sky chair at a days notice which they really don't have to do. The insurance company now have the contact details at Monarch and I really hope they use them. If the insurance company receives word from the hospital that Lucy is fit to fly tomorrow morning and they can book the Monarch flight before 1 pm then we will be able to come home tomorrow. Monarch have now arranged for a sky chair to be flown to Faro airport tomorrow just in case we make that flight. They have really gone out of there way to help us which is so unusual these days. I can't recommend Monarch highly enough. If we can't get the flight tomorrow then they will keep the sky chair in Faro ready for the Saturday flight. I have stressed to the Doctor how much we want to go home so hopefully he will come and see us nice and early in the morning. I am back on the night shift tonight as I want to make sure that everything possible is done to get Lucy and I home. I am certain that Lucy is ready to go now. She is eating really well and looks much brighter. She even managed a little smile today. We will have to sort out her messed up sleep pattern when we get home but that is the least of my worries. It worries me more how long it has taken Lucy to recover and what to expect in the future!

Wednesday, 27 February 2008

27Feb08 - Portimao Day 15

Last night Lucy was fairly good in that although she didn't sleep much, she was fairly quiet. She started to fall asleep over her breakfast and then slept for most of the morning. When I arrived at Lunchtime I had to poke her awake to feed her. She had a huge lunch and then sat happily next to me all afternoon while I read my book. There has been a bit of a setback with the plans for returning home. After being told by the doctor over the last couple of days that Lucy would be discharged on Thursday after completing her course of antibiotics, we received a call from the insurance company to say that Lucy's discharge is going to be reviewed on Friday morning. The was a change over of Doctors this morning and it seems like there has been a lack in communication. I enquired at the hospital about the mixed messages and suddenly I am now being told that the course of antibiotics does not finish until Friday morning. It is all quite confusing and very annoying. We then received a second call from the insurance company saying that they were looking into flights. At the moment I have not got a clue when Lucy is going to be discharged or when the insurance company will arrange the flights. I will have to wait until tommorow morning to speak to the doctor and find out what he/she intends. Well it is back to the hospital for the night shift now, I just hope it is the last one!

Tuesday, 26 February 2008

26Feb08 - Portimao Day 14

I think this is now the longest stay Lucy has had in hospital since she was born although there have been quite a few visits and I may be wrong. Apart from the course of antibiotics there is not much keeping Lucy at Portimao hospital. The oxygen saturation monitor is only connected every now and again just to check but each time the levels are up in the nineties.She is still been given nebuliser treatment but the periods have been reduced from 4 hours to 6 hours. The only real concern for me is the number of times the cannulas have to be changed. For those who don't know a cannula is a tiny little tube which is inserted into a vein to deliver intravenous medicines and fluids. In Portugal the nurses are left to insert the cannulas. I watched yesterday while they tried to put a new one in. It is very difficult now because all the obvious veins have already been used. They only managed to get a new one in on the sixth attempt. Lucy was very brave but you could tell how much discomfort she was in while they poked around trying to find a vein in both arms and feet.Hopefully Lucy will only have to put up with this for another couple of days. Lucy is mostly quite content sitting in her chair. She still struggles with a cough at times and is producing a lot of saliva. The only time she looks to be uncomfortable is when she is receiving the intravenous antibiotics. I was allowed to take her for a push around the ward yesterday and we spent quite a long time looking at the fish.I think it was nice for Lucy to have something different to look at for a short time. All the nurses have said how much better she is looking which is encouraging. The doctor reconfirmed her intention to discharge Lucy on Thursday, I just hope that the insurance company gets the message too. The airline needs a day or two's noticed to have a sky chair ready for Lucy. I just want to get Lucy home as soon as possible.

Monday, 25 February 2008

25Feb08 - Portimao Day 13

I arrived in Portugal yesterday not really knowing what to expect but Lucy is finally showing good signs of improvement. The hospital looks a bit like a prison(but then don't they all!) but actually it is OK.The nurses and doctors are mostly very firendly and very helpful. Lucy is only being fed orally now and she is taking food pretty well. Her appetite is certainly not back to normal but she is having regular feeds mainly of yoghurt and pureed fruit. She has been maintaining her oxygen saturation levels unaided and now no longer relies on additional oxygen which is a major step forward. In fact last night the nurses were confident enough to disconnect her from the saturation monitor. Lucy's body clock is a bit back to front but when she is awake she is happy to sit upright in her chair although as always she is much happier sitting on my knee.She had a decent night last night only waking a couple of times. I also managed a few hours sleep but I will need to catch up on a few zeds before I go back for the next shift tonight. We have been waiting until today for an assessment by the Doctor of Lucy's prospects of returning home. The Doctor was very pleased with Lucy's progress and said that all the signs are good, there is nothing showing in the blood tests and that it must be the latest course of antibiotics that have done the trick. Unfortunately for us there is no orally delivered form of this antibiotic and it is important that Lucy finishes the 10 day course of treatment. This means that Lucy will definitely have to stay in hospital until Thursday. This does mean though that all being well, fingers crossed, touch wood, etc, etc, that I will be able to bring Lucy home on Friday. For poor Lucy it means that she still has another 4 days of cannula's failing and having to be put in again somewhere else. Her poor little arms and legs have been stuck just about everywhere. She had two new cannulas put in last night after the previous ones failed. Her arms particularly look very sore and she whinces every time she has to move them. I guess we are going to have to do some physio on her to get them moving again. For the next 4 days it will be important to get as much food and liquid into her as possible to give her every chance to be as strong as possible by the end of the week. We will find out over the next couple of days if the insurance company can arrange flights for Friday and I will delay my celebrations until I am sitting on the plane with Lucy.

Saturday, 23 February 2008

23Feb08 - Still In Portugal

I am writing this blog on behalf of Neil, so I apologise in advance if it is not up to his very high standards!! Well Joshua Lucy and myself should have made our second attempt to fly home today, but as you can probably gather it was not to be. Lucy remains in hospital but is thankfully starting to (dare I say it?) make steady progress. She still requires oxygen support but has been able to be taken off it for 15 minutes today. Her blood oxygen saturations levels then began to fall below the desired level and she had to go back on it - but its a start. She will remain on antibiotics and steroids for the next couple of days and will be reviewed again by the Doctor on Monday. In the meantime Josh and I are flying home on Sunday evening and Neil is flying out to Portugal to take over the reins. This means that Josh will finally be able to go back to school on Monday after missing a full week. He surprisingly seems remarkably unconcerned about the amount of school work he has missed and I believe would stay here indefinitely if allowed. Although his Mother being the hard task master that she is , has other ideas!!!

Wednesday, 20 February 2008

20Feb08 - Portimao Update

Lucy has now been stuck in Portimao hospital, Portugal for a week. She has not responded well enough to the antibiotics and continues to struggle to maintain her saturation levels when she is taken off the oxygen. Her temperature is mostly under control but has occassionally gone back up again. Lucy has not yet been able to shift all the fluid on her lungs and continues to be treated for this. Yesterday she had another chest x-ray which showed some small white spots on her lungs. The doctor said they were not large enough to indicate pneumonia but he did say there must be some resistance to the antibiotics. Last night they started a new course of stronger antibiotics but unfortunately they will also take a while to start working. This means that it is very unlikely that Lucy will be well enough to fly on Saturday. Dawn has already had to rearrange their flights and this is a real blow. On the postive side the doctor is not over concerned about the long term prospects, Lucy just takes a long time to recover from anything. The care at the hospital has been very good but Lucy is in a general ward with lots of other sick children. The chance of her picking up something else while she is there is a real worry and we just want to get Lucy home. The best outcome would be if by some small miracle Lucy is able to fly on Saturday but I think there is still a long way to go.

Friday, 15 February 2008

15Feb08 - Long Stay

Lucy is still in hospital in Portugal. She has not improve greatly since she was admitted on Wednesday night. She is still on oxygen and IV fluids. Dawn managed to get her to eat a small pot of yoguhrt today which is encouraging but mostly Lucy is not interested in eating. She is also on IV antibiotics but these are not likely to start working until Saturday. Dawn is not too concerned about the eventual outcome and hence I am not there. It is very difficult waiting for phone calls to get updates on how Lucy is doing and my instincts tell me I should have got on a plane on Thursday morning but we have been through so many similar situations with Lucy that this almost seems normal. We have become so desensitised to hospitals that it no longer seems like a big deal. I hope that this time is no different from our previous experiences. It has been a bad week for all of us but especially Dawn, Lucy and Joshua. What was meant to be nice relaxing week away has been consumed by hospital routine. I really feel for Joshua who last week was looking forward to a holiday and it just hasn't worked out that way. Until today he has not even been allowed to see Lucy. The security at the hospital is very strict and visitors are kept to an absolute minimum. Today after seeing other fanilies bringing children on to the ward, Dawn decided that it was about time Joshua got to see his sister. As soon as Joshua came in and spoke to Lucy she opened her eyes and turned to look at him.It is a real shame that they are not able to see more of each other. Dawn's Mother is helping by sitting with Lucy to give Dawn a break which is really great and last night Dawn was able to get a proper nights rest away from the hospital. Overall Dawn has been more than happy with the standard of care at the hospital. The nurses and doctors have been efficient and put her at ease as a result. She has not felt like she has to have a battle with them over Lucy's care, which has happened only too often at home. So to that end Lucy is in good hands. However some of the comments Dawn has had have been almost comical. When Lucy went for the x-ray the radiotherapist asked if Lucy could stand and when Dawn said she could not, he said "Why, what is wrong with her legs?". He then asked if Lucy could sit which of course she can't and he appeared quite put out when Dawn indicated that Lucy would have to lie down instead. Other comments have been similar like "What is wrong with her spine?" and "What is wrong with her head?". I quess a lot is down to translation but at least we can laugh about it.

Lucy's recovery is going to be slow as it always is. They are due to fly home on Monday but it is uncertain at the moment whether this will be possible or not. If not Dawn will have the hassle of arranging alternative flights through the travel insurance company. She will also have to make sure that the airline can cater for Lucy as there are not many that can. How complicated and difficult life has become! I just hope that as Lucy gets older and bigger that this it not a sign of things to come.

Wednesday, 13 February 2008

13Feb08 - Portimao Hospital

Dawn, Joshua and Lucy went to Portugal on Monday for a weeks holiday staying with Dawn's parents. Lucy had been a bit unwell over the weekend but we thought that she was well enough to travel. She slept all the way on the plane which made the journey nice and easy for Dawn. Their first couple of days went really well. Dawn particularly had been looking forward to the break and spending some quality time with Joshua and Lucy. On Tuesday afternoon Lucy's temperature was really high and she wouldn't take any food or medicine. It was enough to make Dawn take her to the local hospital in Lagos. It must have been daunting having to explain Lucy's condition in an unfamiliar hospital especially with the language barrier. Lucy's oxygen saturation levels had dipped into the low 90's so she was given oxygen straight away. She was also given a paracetamol suppository to bring her temperature down. There is no specialist paediatric unit at the local hospital so late on Tuesday evening Lucy and Dawn were transferred to Portimao hospital which is about an hour away from where her parents live. Dawn went alone in the ambulance as her parents were looking after Joshua. They arrived safely in Portimao after a hair raising ride in the ambulance. Dawn then had to deal with a new set of Portuguese Doctors and nurses to try and explain Lucy's complex condition. Lucy was put on a ward with other sick children and the only place Dawn could sleep was a chair at the side of Lucy's bed. She was given a chest x-ray which showed that ther is quite a bit of fluid on both of her lungs. They are regularly suctioning her to help her shift it but Lucy is struggling with a bad cough. Dawn ahas been happy with the service so far but is finding it difficult not being able to find out exaclty what is going on and what the thoughts of the Doctors are. Of course all the ward rounds are carried out in Portuguese. Lucy was able to have a small pot of pureed fruit this afternoon which is encouraging but it is likely that she will have to stay in hospital for the next 4 to 5 days. They are due to come home again on Monday so it is uncertain at the moment whether this will be possible. Dawn is not too concerned for Lucy at the moment which puts my mind at ease a little. Lucy always seems to be affected more acutely to common bugs and needs much longer to recover from them. It is really hard not being with them and not being able to find out what is going on but Dawn is keeping me regularly updated. I know Lucy is a fighter and will do her best to get well as soon as she can. Lucy is stable at the moment although still coughing a lot and still on oxygen to help improve her saturation levels. The nurses are being very attentive and she seems to be in safe hands. Some people like to collect stamps, some like to tick off all the countries they have been to but Lucy likes to tick off as many different Hopistals as she can.

Tuesday, 12 February 2008

12Feb08 - Special Post

Last week we had some excellent news, Lucy’s best friend Laila has a new baby sister.She has been named Kyla which comes from her brother and sister’s names. As well as being a lovely name the significance to Hayley and Paul is immense. Their son Kai died when he was very small and they have honoured his memory in the best way possible. Laila has had similar challenges to Lucy and has brought significant changes to their lives in the last three years. Kai and Laila will now always be a inextricably linked to their new little sister. I think Kyla symbolises in a really loving way that after all the hardship Hayley and Paul have had to suffer they still cherish what they have and their strong will to carry on regardless has resulted in something wonderful. I am so pleased for them and for Laila. Having a little sister will be so good for her.It was certainly not all plain sailing though. Due to Hayley’s history she was constantly monitored throughout her pregnancy. Towards the end she was in and out of hospital and had a couple of early scares. Kyla was born by caesarean section at 35 weeks just a touch over 6 pounds. At first everything went well and we even got an picture message the same day. She was moved to the neonatal unit for monitoring because she was a little premature and still quite weak. It was wonderful news because we had all being worrying if everything would go okay. The next day we received a message to say that Kyla was being put on a ventilator and being moved to a different hospital in Manchester. It was terrible news and it was difficult not to think that everything was going wrong. Hayley was stuck in our hospital and could not go with her baby so had to lie there wondering what was going to happen. It must have been absolute torture. Thankfully by the following day Kyla no longer needed the ventilator and it wasn’t long before she was back in the local neonatal unit.
We finally got to visit Kyla a week ago and it filled me with mixed emotions. It was the first time I had been back to the neonatal unit since we walked out of there on our way home with Lucy. Just walking into the building brought everything back. Walking down the corridor in the neonatal unit felt so horribly familiar I just wanted to turn and walk out but I am glad I didn’t. Little Kyla looked so tiny and so gorgeous. Hayley let me put my hands into the incubator and hold her tiny hands. The first thing that came into my head was that everything was working properly. She was moving normally, her hands were opening and closing and she was twiddling her toes. It almost felt unatural and I know that for Hayley and Paul, the differences between Laila and Kyla have exposed how different it is to have a normal baby. One of the first things Paul commented to us was that Kyla was already looking at him and he knew that she could see him. It sounds like such an obvious thing but I understand exactly what he meant. We are conditioned to interpret minute responses from Lucy and Laila that would not be recognised by anybody that did not know them, so to suddenly see how a normal baby responds without effort, makes you realise how different you experience has been. Looking at Kyla I felt this too but for the first time since Lucy was born I didn’t feel resentful seeing a perfect little baby. No one deserved this more than Hayley and Paul and I am really happy that it has all worked out for them. Their story just proves that it doesn’t matter how cruel life can be, if you stay strong, stick together and don’t lose hope in the future, wonderful things can still happen.

Monday, 11 February 2008

10Feb08 - Wedding Sleeper

Lucy has continued to struggle with her latest bug and has had a temperature for most of the weekend. We made the decision to still take her to a wedding on Saturday, not least because she had a gorgeous new outfit to wear. Lucy looked amazing in matching pastel blue and cream. She even had matching shoes!At big events we have come to accept that Lucy will attract curious attention which is only natural I suppose. We wanted to make sure that there was more than one reason to look at Lucy and it worked. We had loads of comments about how pretty she looked and that made the effort worth while. In fact it made me feel like I wanted to show Lucy off to everybody rather than shield her from strange looks and glances. Both Dawn and I made an unconscious decision to enjoy the day with our children and friends and I think our positive attitude made a big difference.
We had suspected that she would spend a lot of the day sleeping and we were not wrong, Lucy was asleep when we arrived early to feed her before the ceremony.Weddings can be emotional for lots of different reasons. We have known the bride and her parents for a long time and they are a really lovely, close family. We knew how much it meant for Chris and Jane, Katies parents and how important this one day was. It was a beautiful ceremony and must have been very special for them. It was Dawn that felt it first, the recurring realisation that we are never going to have this day with our daughter. There is going to be no groom waiting nervously as all the guests turn to catch a glimpse of her. Dawn will never get Lucy ready for her big day. I am never going to get to walk my only daughter down the aisle. It is just immensely sad and so unfair.

After the ceremony I had to think about trying to get Lucy to eat and drink which was a welcome distraction. Worrying about getting sticky food splattered on my new suit soon put those thoughts to the back of my mind. Jane had made a special effort to accomodate Lucy which was a really nice touch. She had arranged for an escort to get as to the room where the wedding ceremony was held avoiding the stairs and even arranged for ribbons to be tied to Lucy's chair to match the seats for the afternoon reception. It was lovely that Lucy had been included. There was even a little cuddly doll waiting for Lucy at her place on the table.Lucy fell asleep again only to wake up just in time for the main course so as usual a had a little person sitting on my knee while I attempted to eat without dropping my food on her new clothes. I didn't mind and anyway I am quite good at it now. After struggling with Lucy who had by this time had become a bit unhappy I was only to pleased to hand Lucy over to Jane. After a couple of minutes of Jane's cuddles, Lucy was back in dream land again. I love it when people genuinely want to see her and hold her without being apprehensive about how to do it. Lucy was handed around and treated just like any cuddly little girl which was lovely to see.Lucy coped really well to say she wasn't feeling her best. Her new outfit must have had a part to play!

Friday, 8 February 2008

08Feb08 - Up and then Down

Lucy's good week continued with a session in Dad's salon. She is much more tolerant of having a hair washed and dried these days and I no longer have to fight with her to do it.I get the feeling that she actually enjoys the pampering, particularly the noise and feeling of the hairdryer.Lucy is modest but like any little girl she likes to look good. When it comes to a wash and blow dry I think I have just about mastered it. I have even learnt how to put a clip in but plaits are still a mystery.I must have tempted fate in my last blog when I wrote about peaks and troughs. It is becoming a habit with Lucy to throw in a wild card just when we think everything is going well. Yesterday afternoon Dawn had to pick Lucy up early from nursery because she suddenly spiked a temperature of 40 degrees. We have been managing it with calpol ever since but unfortunately it looks like she has picked up yet another bug. Her timing could not be better as Dawn is taking both Lucy and Joshua to Portugal on Monday for a break with her parents. I took Lucy to the doctors this morning to get her checked out and apart from her temperature there was nothing the doctor could find that indicated anything more than a non-specific virus. She prescribed a dose of antibiotics which we will only use if Lucy's condition deteriorates. I just hope that over the next 48 hours Lucy can manage to kick the bug. Dawn, Joshua and Lucy are all looking forward to their week away and the last thing they need is another one of Lucy's "episodes".

Wednesday, 6 February 2008

06Feb08 - Catch Up

I am having a slight technical hitch writing the blog at the moment after spilling a glass of wine on our computer keyboard. The keyboard was badly traumatised by the experience and has not recovered.

The last week has been a good one for Lucy. She has been very happy and smiley which has rubbed off on all of us.Lucy has also been vocalising quite a lot. At school they even said that she has been smiling and giggling especially when she is playing on the resonance board. When Lucy is like this it gives as all a lift and everything seems just a little easier. It is hard not to wonder how long it will last, as Lucy's life so far has been a perpetual series of peaks and troughs. I guess I should just make the most of this peak while it lasts and who knows, this might be normal!

At school yesterday Lucy had a good time with messy play. She was a bit naughty because she objected to having to sit in her chair and let everyone know about it at the top of her voice. Lucy's teachers are used to her now and are never put off when she misbehaves. They just carry on as enthusiastically as ever which is brilliant. I suppose it is a form of discipline for Lucy to know that she can't just stamp her feet and do what she likes or not do what she doesn't like.Lucy can be a little sensitive to things put in her hands but it is great to see her getting to trying different sensations and feelings. Yesterday it was bright yellow, sticky, cornflour gunk....nice!It is just nice that she can do all this messy stuff at school instead of at home.