Pre-planned hospital visit.

After weeks of deliberation and worry, we decided to let Shay have his port removed. Shay went in on Tuesday as he had to have an ECG and bloods taken to make sure that he was well enough medically for the operation to go ahead.
Even on the way to GOSH it was 50/50 in our minds whether to go ahead with the operation. After talking to his doctors it was decided the best course of action was to have it removed. This was because he no longer needs it for red cell transfusions and also they are seeing alot more ports becoming infected and failing. They put it to us that they would prefer Shay to have the port removed in a controlled environment like GOSH, rather than him being rushed in as an emergency case. So the removal of the port was in place plus a lumbar puncture. Shay was slightly embarrassed when he had to put the hospital gown on, he did insist on keeping his boxer shorts on. For any parent it is the most heartbreaking thing to see your child put under general anesthetic, but for us it was even worse. Working on a patient with Mitochondrial disease is extremely risky and shouldn't be undertaken unless it is absolutely necessary. The entire procedure we were told would take around 40 minutes to complete. After the longest ever 40 minutes we started clock watching, an hour went by and we really started to worry. Worrying never gets us anywhere as we were called down to theatre just past the hour. Prior to Shay going under they wanted to also take a tissue biopsy which we agreed to. The tissue biopsy was taken from the port site so he didn't have this as an extra wound on his already marked body. The biopsy will tell us so much about Shay. It will take a very long six months for the results to filter back. We know Shay has Pearson's but this will tell us which complexes are affected; whether it will or is morphing into 'Kearnes Sayre Syndrome' amongst a whole lot of other information. Also it will quite possibly tell us what is happening with his legs as this is one area he always complains of being in pain. It's going to be the longest wait ever.
Shay is now back home and is recovering slowly. He misses his port as it is something he has got use to for two years and Shay will miss showing his port of to everyone that he meets.

Shay & The Royal Bodyguard

On the way to GOSH on Tuesday, Daddy and Shay were invited onto the film set of 'The Royal Bodyguard' to meet some of the stars and characters.

Sir David and Tim welcomed Shay onto the set and both of them made him feel totally at ease. Even though everyone was obviously having a very busy day, they took time out to talk to Shay. They were absolutely great with him. As usual Daddy was snapping away with the camera and Shay took everything in his stride. Shay thought Tim looked funny covered in oil and wanted to know why. He questions everything at the moment and can ask up to 20 whys before he is satisfied with the answer! The Bodyguard is being aired Christmas day, which I am sure Shay will enjoy watching.

2nd Hospital Visit!

Shay was recently tested to see if his body had developed antibodies against the childhood disease chickenpox. Back in March he developed some spots which the hospital thought was chickenpox. He was quickly put on antiviral drugs over a five day period. The test came back negative meaning Shay has not had chicken pox previously.
A couple of days later Shay wakes up one morning covered in spots his temperture was starting to rise, I really couldn't believe what I was seeing. A very Quick call to the hospital and we were on our way in. Shay was kept in for five days again, he was closely monitored as he is still neutropenic. His temperture went up to 40 and down again numerous times throughout his stay. The doctors did not know what effect the chicken pox was going to have on his body. Thank God all that is over!!! We are going to have his antibodies checked in approximately 8 weeks again. This should show us that it was indeed chickenpox. Also a very big thank you to Shay's community nurses who made it possible for Shay to come home for one afternoon. They were able to bring a mobile iv machine which enabled Shay to have his meds in the comfort of his own home. Little things like this makes all the difference to our little man.

1st Hospital Visit!

Shay has had a bad couple of weeks and is now well on the road to recovery. Firstly, Shay has been complaining of pain in his legs. He will wake up in the mornings limping and cannot walk down the stairs. This seems to gradually get better after a couple of hours. Lately however, it has been happening more throughout the day with no recovery in between episodes. It got to the point where we were so worried that I phoned Shay's paediatric consultant at his local hospital. She advised for us to bring him in straight away. We were extremely worried that Shay was showing signs of metabolic acidosis. The doctors were extremely quick at taking bloods and sending them to the lab to be tested. I am estactic to say that they came back negative showing no signs of acidosis. We don't know what is causing his pain but he still has it and complains constantly to us. When he is with other children he tends to hide how he feels as he just wants to be part of a group and be like everyone else.

Shay's special day.

Shay has just had the most fantastic day as a new fledgling police officer! He has been asking Daddy for quite a while to "go catch bad boys". A huge thanks to the Metropolitan Police Service for making this dream come true.
Shay was aware that he was going with Daddy and his friend Simon to work for the day. Shay was excited that morning and he even helped pick what to wear. What he was not expecting was to be issued with his very own uniform! The uniform services dressed Shay in police trousers, a police shirt, belt and utility belt and even his very own beat duty helmet (all customed made to fit Shay especially). Shay looked in the mirror and whispered to daddy "get bad boys dad". Shay was thrilled with his helmet it really made the day that extra bit special. Now all he needed was a set of wheels, so a short walk to the driving school and he was in his element. He enjoyed being driven around with lights and sirens on in the police armored truck. That was not fast enough for him, it was not long before he was in the marked BMW estate chasing a criminal around the streets of Hendon. The pursuit lasted about 5 minutes before the criminal stopped and tried to run off. Constable Shay Murray was overjoyed when he managed to catch the bad person and even arrested him.
Next, it was the skid pan. After the car spinning around the first few times Shay said to Dad "just like Mummy, Dad". Shay took all the spins, turns and stops in his stride.
Now, Shay loves being around dogs and it was a real treat for him to see the dog section at work. Shay was introduced to several dog handlers and a couple of the police dogs. Shay was shown how the dogs track naughty people and then shown how they catch them when they run away.

After a display the dog sergeant showed Shay his dog and let Shay groom him (which he thoroughly enjoyed). Whilst doing this Shay noticed a handbag on a chair close to him. A few minutes later Shay started to blow his police whistle as he had seen a criminal take the bag and run off. Shay was blowing his whistle really hard and started shouting along with the other officers present. The best part was for Shay to witness the police dog chase 'the bad person'. Shay witnessed the dog attack and knock the criminal to the ground. Most children would have been scared witnessing this. As Shay had his uniform on it didn't faze him one bit whatsoever. At this point in the day Shay was looking very tired but still wanted to do more.

After lunch and getting some much deserved rest. An important part of Shay's day was to meet with a senior officer. Shay took the oath and was proudly sworn in as a police officer. He was awarded advanced car driving certificates just to name a few. Shay had a fantastic day and as usual he didn't want to go home. We knew it would take him a few days to recover, but just seeing the amount of fun and excitement he had today has made it all worth it for our little man.

Shay enjoyed meeting some fantastic people and we would like to thank each and every one of you for making this day just so perfect. Don't tell Daddy BUT Now he wants to be a FIREMAN!

Hospital

Following on from my last entry - Shay was hospitalised for 5 days due to an excruciating pain high up on his right side. He had no coughs, colds or infections that we could see at this time. He has been complaining of being in pain for about 2 weeks prior to him going to hospital. Shay suffers from alot of stomach aches especially when he eats so naturally we put it down to this. It's very hard for such a young child to locate exactly where the pain is. That Monday evening while Shay was asleep, he woke up crying and just by listening to his cry you could tell that something wasn't right. So bags packed in a hurry and a quick dash to our local hospital. On arriving Shay's port was accessed, blood cultures taken and IV antibiotics started. When this happens we know he is going to be in for at least 5 days. His blood cultures came back negative meaning that any infection hasn't gone into his blood stream. Shay's CRP came back that he had an acute infection and inflammation somewhere in his body. Shay's tonsils where very large BUT causing him no ill side affects. That very night Shay had an xray which showed nothing unusual. As it was so late they decided to scan Shay the next morning. Morning, afternoon and early evening arrived and still Shay is waiting to be scanned. Shay is still being given IV antibiotics with no sign of the long awaited scan. Funnily enough his pain has completely disappeared. We mention to the doctors about a pancreas test, on Wednesday morning bloods are taken to test his pancreas function. (which came back clear). Late afternoon Shay at lasts goes for the long awaited scan which unremarkable shows nothing wrong. You can see a complete difference in the pictures...Shay is standing up for his xray the first night in hospital. He was looking very pale and tired. By the time he had his scan he had rosy cheeks and full of smiles.
Shay was administrated antibiotics on admission to hospital by IV. This is the quickest way to deal with infections and on previous admissions has worked very quickly with Shay. To me it seems obvious that any infection he had was cleared up very quickly by the antibiotics. I feel the scan, and pancreas function test was taken far to late for it to show anything. I believe Shay might of had an attack of 'Pancreatitis', talking to other parents with children with Pearson's this seems the most probable explanation for his pain. On leaving hospital he still had enlarged tonsils but this is believed to be only a secondary infection (without symptoms) and not the primary cause. So we have left the hospital with no knowledge or understanding of what was wrong with him. All we know is something has happened.....along with the pain, his speech became slurred and his eyelids droopy. It has taken well over a week for his speech to recover to how it was before and still he is not as clear as he was before.
Shay has a very special day coming up, which I will update everyone in a couple of weeks. He is going to be soooo excited and such alot of people have put so much of their time and energy into this for our little man. All we will say at this time is uniforms, dogs, cars, chases and a skidpan! Mix all that with Shay and he is going to have a day to remember.

Hospital visit!

Shay has been in hospital this week, which I will update you all later on. It has been a huge reminder of the daily struggles our son goes through. He is four years old, but has the aches, pains and fatigue of someone much much older. You look at him and feel totally powerless. His eyes tell a completely different story when he looks at you. The sadness I see from him at times is overwhelming it's hard seeing him like this. Tears are spilt countless times when he says 'I love you Mummy' 'I love you Daddy' . If he goes anywhere we don't like saying goodbye it's always see you soon. Both Alan and I have become very deep thinkers locking up that raw emotion just to get through everyday life and the struggles that brings with it. When people ask how he is it's always he's doing good, he's fine it's the only way to protect our emotions and to stop everything from boiling over. He isn't doing great, people see him playing and having fun! We see him falling over, dropping with exhaustion, not eating as he says 'me so tired, it's hard' or 'my bones are hurting', struggling with his mobility on a daily basis. BUT, take all that away and we have been blessed with the most amazing son, who has bought so much joy and laughter into our life's. He is an inspiration to us and to you, he is a fantastic brother who is so caring towards others. My little boy is fighting life daily and we are so proud he picked us as his parents.