Story written 2013
Finley is my beautiful little trouble maker. He was born at 35 weeks by emergency c section due to fetal distress, prom and sepsis.
He was a good weight but very poorly. He was 6lb 10oz – the biggest baby in intensive care, but the sickest. He wasn’t breathing on his own and we don’t know how long he was like this for. He was put straight onto a ventilator on high setting and at one point on 100% oxygen and still not adequate. He was given two doses of surfactant to try and help his lungs to move. They called this respiratory distress syndrome and told us that we should come and see him. He was on the ventilator for three days and then oxygen for another day and then nothing – my super-duper baby. This time our consultant presumed reflux so they took feeds slowly. After 2 weeks he was able to feed from a bottle so his feeding tube was taken out and we were able to take him home.
Five days after coming home I found Finley blue and not breathing in bed. We rang 999 and got him to hospital and it was then that they said it could have been an ALTE (apparent life threatening event) and in our case probably caused by reflux. Our consultant gave us omeprazole and domperidone right away and when he seemed to be choking on feeds he gave us thickener.
Finley continued to choke on feeds and get chest infections but it was only when he caught bronchiolitis before Christmas was this taken seriously.
The last 4 months haven’t been very good for Finley. He has been tube fed via a nasal gastric tube and then via a gastrostomy since he was a couple of months old with little problem, but then about a year ago we started getting problems at night and had to start using Farrell valve bags to help vent his tummy to stop it hurting. Then 4 months ago his stomach seems to just stop working. All of his feed would just pour out into his vent bag, it started leaking out of his gastrostomy stoma making his skin sore. He also started to get very bloated and complaining of tummy pain. “I hurt” is heartbreaking to hear from a 2 year old who has only a few words. Pain shouldn’t be one of them really. He’s also had what looks like an allergic reaction to everything, he has been getting red rashes, lip swelling, blotches all over his face, dry skin. He has no known allergies so this has all been the mystery that is Finley.
Four weeks ago we went to theatre and had a gastro-jejenal tube fitted so that we can feed into his small bowel instead of his stomach, this allows us to get feed in and to also be able to drain his stomach when he is complaining of pain or gets bloated. He has also had an mri scan to check for cerebral palsy, but we had the results from Finley’s brain scan and it wasn’t as we thought.
They originally scanned him to check for cerebral palsy due to his birth, but instead of finding that they found a large mass that is taking up a large part of his left temporal lobe. This has been so upsetting as we really expected all to be well. It has thrown us into a whole new set of doctors. We now have neurosurgeons to see and Finley needs to have special eye tests due to the positioning of the cyst (which is sitting right behind his eye) to make sure his sight is ok and the pressure is ok. He will have hearing tests to make sure the cyst isn’t interfering with that and then rescan to see if this thing is growing in there and if so it might mean brain surgery. Always terrifying.
This is all on top of the fact that he still isn’t talking. We have been invited to a speech and language course to help us to try and develop Finley’s language and understanding. We also attend sing and sign toddler group on a Thursday to try and help him to develop or sign or just be able to communicate his needs to us.
It is all just so much more than we are used to as parents, we can deal with the tube feeding and the gastro surgery but this is a whole new and scary ball game.
Update 14th April 2016
Finley and his family are now moving on from Post Pals, we would like to wish them all the best for the future. Finley’s family said this:
A thank you for everyone who has sent post to all three children over the time that they have been a part of post pals. We are really grateful. We have also saved pretty much every card and letter that we have received over the time we have been receiving post, they are in scrapbooks so that Finley can look back over them when he is older and remember everyone who took the time to make him smile.
Update 6th February 2016
We are all just getting over a sick bug here. Awful bug made worse when you are poorly and can’t be sick. He was wrenching and floppy. Was sent home from school even after the bug because he had fallen asleep and was too floppy to sit up and do any work. Then slowly passed it around his Dad and then Jack and Olivia.
All looking much better though now, thank God. Finley went to hospital for a pre op this month, for some reason he was referred to the local day surgery unit instead of the children’s hospital. We got there and filled the forms out for them to say no chance of being able to have surgery there. So waiting for another preop and then date to come through.
Update 8th January 2016
First we would like to say thank you to everyone who sent a Christmas card, post card or gifts to Finley, Jack and Olivia this Christmas. Huge thanks to the elfs and to our Mrs Claus for amazing reindeer post. You all made Christmas that bit more exciting.
December has been up in the air. I was back in hospital and had surgery just before Christmas. This meant that Dad had to take Finley to the hospital. Not something that he is used to. He did a grand job. I think sometimes he doesn’t get the praise he deserves but he kept a house running, kids well and medicated all by himself. He managed to take Finley for his tube change. A milestone we have never achieved before as he has usually pulled it out or the Jej tube has migrated back into his tummy before the 6 months is up but he did it. He assured me that he was a brave boy and that he needed a big treat when I was better.
He has been seen by urology just before Christmas for some minor issues and will be having some surgery in the next couple of months.
He has also got to go in on Tuesday for a MRI brain scan under anaesthetic to check on the pressure in his brain. Fingers crossed for no change will be appreciated.
We are all just trying to get back into routine after Xmas. Day to day treatment stays the same regardless of the day but the days seem to fly by quicker at Christmas and deliveries get lumped together and its all a faff. Back to reality now.
Update 1st November 2015
Daddy had to hold down the fort at the beginning of November as I discovered I had gallstones. This started with immense pain and then I turned yellow and was admitted to hospital on the spot. As a nurse I make a terrible patient. I kept taking all the old ladies to the loo and trying to make my own bed. I must say Daddy did an amazing job. He cleaned better than me and managed all tube stuff. He did ring every morning to ask what Finley took to school but I’ll let him off for that. I’m home now but still feeling poorly. On the urgent list now for taking it out. Finley had a few appointments. They have noticed that he has developed a latent squint. He has needed new glasses and he has been having some jerky movement episodes, because of this he will be having a repeat MRI scan on his brain to check that the cyst isn’t putting pressure on anything. Hopefully it’s just precaution. We are looking forward to Christmas. Thank you for the cards that we have received already.
Update 1st October 2015
Finley has settled at school now, they are actually working with me and looking after him. We had issues with high gastric output for a few days early on in the month. Think it was his body being ready for his cycle meds. These are for bacterial overgrowth. They can be harsh meds but they work for Finley. His output slowed and he didn’t bloat as much. We nearly ended up inpatient with another aspiration chest infection but managed to ride it out at home with Finley being a superstar with his inhalers and letting us increase them as needed. We also had an adventure this month. We went to chessington world of adventure to see their Halloween weekend. We met up with our friends then we went to the Harry Potter studios on our way home. Best weekend ever. We would love to go again it was that good and even Finley loved it.I was such a proud geek mum when he asked if wingardium leviosa would help us put the Christmas decorations up. He has a cloak and instead of a wand used a sonic screwdriver. It’s incredibly cute.
Update 1st September 2015
Finley started back at school this week in a new class, a big boy class. We have had a couple of teething problems due to lack of training, such as giving him thin fluids when he aspirates. Then him ending up with a bad chest for the first week back. A case of not reading the health care plan properly but we are working on that and will get there. I think it’s always the same. So far he has enjoyed the new class. His new teacher is great and the support worker used to help Olivia and so isn’t scared of tubes. They are working extra hard with him on his reading and his number recognition. We know that these are the things that can be affected by the cyst in his temporal lobe.
Update 11th August 2015
Sometimes life is a blur, although it seems to have gone by so incredibly slowly some days, this month Finley has turned 5. My incredible boy has come so far and overnight has materialised into a cheeky, giggly little monkey.
He had a great day. He chose to go and see the fish at the Sea Life Centre, in Manchester. We have Merlin passes so this is a regular trip out for us. The Legoland Discovery Centre is practically next door too, so we can do both in a day. Lots of fun was had by all.
We also had a week at the sea side and it was so hard. I think we forget that a holiday for families like ours aren’t always a relaxing escape, it’s just day to day life made complicated by being in a small space away from home.
Finley spent the first couple of days/nights with group, he wasn’t tolerating feed, wouldn’t have anything orally and was vomiting up all of his meds. He was then spiking temperatures and ended up with a chest infection. I’m not sure if he aspirated on vomit the days before. Holiday was then spent trying to get meds into him and feed and keeping his temperature down. Still, we built a sand castle and had fish and chips on the sand. Well, the rest of us did. We were very happy to get home.
Finley seems to be struggling recently with food, he is having less and less and then what he does eat is things that melt to nothing or to liquid, like melon or strawberries. Anything else is just refluxed back. He still has a cough but I’m hoping that it is going to go soon and he can catch a break.
The dietitian appointment showed that he needs his feeds increasing too, as he isn’t gaining weight like they want him too and that is this month’s challenge. Hopefully we can increase without upsetting him and making him sick all over again. Wish us luck.
Update 6th July 2015
Our admission went ahead last month. However, in true Finley style, he pulled his Jej tube out the week before we went in and ended up admitted. They couldn’t get it in for the jejunal tube replacing so we were in on iv fluids. They put in a nasal jejunal tube which is literally a tube that goes up the nose and all the way into the bowel. He was very brave and kept this in until he could get his proper tube back in. It was the Friday before they could do this and then we went to London on the Sunday for tests. We still don’t have any answers from them yet but I’m sure we will in time.
Luckily he was feeling all better in time for his school trip to the cinema. He really enjoyed it and was excited to go on a coach.
We were also healthy enough to go to the Post Pals party in Surrey. Like last year, it was absolutely amazing, and we want to say a huge thank you from all the family for the work that goes into it.
Update 31st May 2015
We are gearing up for an admission to the Royal London next week. They are finally going to look in to why Finley keeps having internal bleeding. Finley knows that he is going to London but as of yet doesn’t know that he will be going to theatre or having to have tubes in his nose again for a day or so. We will tell him closer to the time but well wishes would be great for being brave. We have had a fun day out today going to Blackpool tower circus and the sea life centre for treats before our trip down.
We are also trying to sort school out for the next year. We need new teachers trained and risk assessments for P.E. I have to step back sometimes or I’d go mad. School miss the point of what we need sometimes.
Olivia wanted to say a big thank you to Becci who has been sending her monthly project gift. She really loved it. We are really grateful for all our post so I just wanted to say thank you.
Update 1st May 2015
Finley has continued to have bleeding from his stomach and our local hospital don’t seem to be interested at all, so this week we are going to see the gastro team in London and hopefully they can help him out. It’s awful for us to deal with him in pain and struggling with no plan to help. We are really hoping that we can get some kind of plan from them to find out where the bleeding is coming from and how to stop it.
He also seems to be coming down with something. There has been colds and sore throats going around and we are really hoping that it isn’t anything to worry about and that it stays off his chest so we can get down to the appointment safely.
Update 19th April 2015
Big news this month is that Finley finally got a hospital bed. It will help us so much. Practically to save us from hurting our backs lifting him or bending to sort him out through the night. Hopefully it will allow us to get more sleep by getting him in to a better position so he doesn’t choke through the night like he has been doing.
We also had a trip to the dentist. He has a little enamel that is bunched up. She thinks it’s probably medication he has been on while the tooth has come through but it could be him grinding his teeth. Time will tell.
Gastro wise we are getting really annoyed as nothing has happened since our last update. No one is taking responsibility for him and arranging any of the tests or trials that he needs. In the meantime Finley is still having fresh blood draining from his stomach. He is still getting pain and bloating and horrid mucousy stools. This mum is getting more and more frustrated about it all.
On a lighter note, all three children have loved their post the last couple of months. It really does make a difference and cheers them all up. You should all have a warm fuzzy feeling for sending it.
Update 20th March 2015
Finley has been in hospital this month and worried us by having bright red bleeding coming out of his stomach. They think it is acid damage from the persistent reflux that just won’t stop. We increased his reflux medication and this has helped. We are now chasing up the doctors to try and get his scopes done to have a good look.
He needs a long list of tests but London and local are trying to decide who will do these and when, so in the mean time Finley struggles.
He very often (too often) gets a lot of pain in his tummy and this along with bloating makes him cry and no one will give us anything to try and help him. We have to helplessly listen to him screaming and shouting when we can’t help him. It makes my heart hurt. I hope they pull themselves together soon and do something or I will be putting in the biggest complaint.
Ending on a positive though. His new big boy bed is ready! He will finally be comfortable in bed.
Update 31st January 2015
We have had our second opinion gastro appointment at the Royal London hospital this month and I was really nervous. I tend to hide a bit when I’m worked up and had been the weeks before. We just really need some answers.
Every night for the last two weeks Finley has cried that his tummy hurts and he cries in his sleep. His tummy is distended a lot and he is begging for pink medicine or a dressing on his tummy. It’s heartbreaking and very tiring. We need a plan, some answers, and I want a happy child again. No one should have to live in pain, especially not a child.
I felt unprepared for the appointment like I should have a quick medical history ready for the doctor but with everything that has gone on with Finley there isn’t such a thing as quick. We got lost in the hospital, then I had to stop and give first aid to a lady who was having seizures until the crash team could get there. Finally we got there though and on time. We didn’t get to see the doctor we thought we were seeing, but it was still one of his team in though.
They took a very thorough history which took ages. In short, they don’t know what’s going on and they feel he is a complex boy. The doctor wants to talk to the doctor we were meant to see and then they will arrange the best tests to see if they can find out what’s wrong. He did say they do see Ehlers Danlos syndrome kids that do deteriorate and often it’s hard to reverse. Even though in some cases they improve with age, it is so hard for them to tell which camp Finley will be in. Finley was very cooperative. He scored 9/9 on his beighton hyper mobility score. No surprise really and it seems that he has EDS. They said the basics are scopes and biopsies and that he suspects he they might want manometry, but there is a few months waiting list.
All in all it was a good appointment where I felt listened to and they took on board my frustrations. They agree that the bloating can put pressure on a fundoplication wrap which would explain why Finley’s is herniated into his oesophagus. It could also explain why he couldn’t have a button Gastrostomy as they burst all the time.
Jack has also had a problem with his feeding tube. The tube had suddenly got 3 or 4 inches shorter and he could pull it back out as it hurt too much. He then hid it from us until he was in so much pain he couldn’t stand up properly. We phoned our hospital to tell them it isn’t right. I suggested to the surgeon on call that I think the disk holding the peg in had been digested past the pylorus and into the duodenum. He told me that this couldn’t happen. So I pointed out that it had once before. He spoke to our surgeon who agreed with me and told us to bring him in. Jack is so anxious of hospital and doctors that this wasn’t easy and it was really emotional for me. He was saying if you loved me you would let me stay at home.
On arrival they saw the state he was in and immediately called in a midazolam prescription. This worked really well. He was zonked out and doesn’t remember them pulling the tube back through into his stomach even though it’s pretty brutal. This I am thankful for. Then I had to sit next to silly drugged pre-teen as he came around. That bit made me laugh out loud.
Finley joined in on this with an eventful day here on Thursday. First our car wouldn’t start so we were late for school. Then I had to rush to work an hour late. I managed one patient visit and we get a call from school saying that Finley had pulled his jejunal tube out. Marvellous. My mum rushed to pick him up from school and I rushed home from work and we then spent the rest of the day at the hospital getting the tube put back in. Finley was super brave and kept still, looking at the X-ray screen of his tummy while they guided the new tube in. He had quite a sore tummy that night and going into the next day. It’s normal post placement and we gave calpol and cuddles. He has been back to his usual self today thank goodness.
Perfectly timed was a lovely gift from Post Pals, the children all got a wonderful balloon that had confetti in. Finley absolutely loved this. He is very much a balloon person, he spent days batting it around the room.
Also the big news in our house is that we are getting a bed!!! Does anyone remember us having the OT here a while back about a profiling bed for Finley? She was appalling and told lies and surprise surprise he was declined. We put in a complaint through pals about the OT in the end. It worked for us as the head of services rang and I told her how desperate we were. Apparently the OT was out of her depth. She hadn’t had to apply for a bed for medical need before and panicked a bit. They took Finley’s case to the big joint meeting they have to see if anyone could come up with anything to help and they couldn’t so the panel have reversed their decision and we will be getting a big boy bed. It’s really ugly looking but I don’t care. We might all get to sleep without Finley choking and strangling himself with his tubing. I can’t wait.
Update 16th October 2014
Finley is thankfully getting over chickenpox now. He is still scratching at a couple of spots but much better.
He has started school this term too and is full time. He is shattered as it’s a long day and it’s taking some adjusting for both Finley and me. It drives me mad that the school don’t give me enough information that I ask for and feel like it’s two sides and we argue.
He has had new peidro boots too, they are really high boots that hold his ankle so that he can’t get up on his toes to walk. They have taken some getting used to as they bruised his legs at first. They have been padded now and he is wearing them.
I spoke with genetics today. The Ehlers danlos syndrome geneticist. They have confirmed a partial diagnosis of ehlers danlos syndrome type 3 which is the hyper mobile type. We know that this doesn’t cover all of Finley’s issues and we will be still looking for them but it is nice to know that we have something that we can tell people.
His Microarray blood test has also come back and he has a variant of unknown significance on chromosome 14q21.2. They have said that they can’t find a syndrome on this branch so won’t be looking into it further unless other kids with similar symptoms come back with a similar variant. So thats interesting but just another little add on to the list of quirks that Finley has.
We are still waiting on the results from Finley’s blood tests and EMG tests to see if it shows any myasthia muscle weaknesses. Just more waiting. We have got several big appointments coming up that we are getting medical history together for. Rheumatology, neurology and then our appointment is through for the Gastroenterologist in London. A really big journey for us for an appointment but I have high hopes that they can help us.
Update 2nd August 2014
Hi, sorry it has been so long since our last update. Finley had still been having a lot of problems with his gastro-jejunostomy tube. He had previously had MRSA in the tube and it continued to cause problems so in June we had the tube re-sited. They surgically closed the previous stoma and cut out the affected tissue and then put a shiny new tube in its place.
Two days after this surgery we were in a bad car crash, luckily apart from some burns and bruises we all walked away, we just had to go via the hospital to have them check over as Finley was only two days post-surgery. That and the fact a 28 ton wagon doing 40 miles an hour hit us. We are still in a courtesy car now while we wait for ours to be repaired. They weren’t sure if they were going to be able to fix it at first but it was a brand new car (three months old) so was worth it.
We did manage to make the Post Pals party though and this was amazing as always. We met other Pals families that we have been talking to online or have met previously and the kids were spoilt. We all adored the animal show that was on and the children got to hold and interact with so many different animals. I even held a spider – brave at the time, but now I can’t look at the photo as I shudder! We drove home via Warwick castle to break up the journey and the children got to try out archery – even Finley had a go even though the bow was twice the size of him. He was over the moon that he hit the target.
Since surgery, Finley’s new tube had been very sore and much more painful that it was before. We hope that this is just because it is new but then on our sunny beach holiday to Scarborough this last week Finley came home with chicken pox. We couldn’t believe it, we had made sure that we had a week free from hospital appointments and from therapy and then he gets chicken pox! Poor boy is covered in them. He is doing really well but his new stoma site looks terrible now as it has spots on it. I’m hoping that they clear up soon.
We have some medical appointments and tests coming in the next couple of weeks, one could actually rule in or out a diagnosis for us. They are looking at a partial diagnosis of congenital myasthenia syndrome. This is relating to the trouble Finley has always had with low muscle tone, ptosis, trouble feeding, chewing, aspirating, respiratory distress and excess saliva. It would be nice to know either way. He is waiting for an EMG test but we are asking for it to be done with sedation as it isn’t very nice and involves putting needles into the muscles and then giving them an electric pulse to check the messages that flow between. I cant see Finley letting them do it otherwise. Then he has blood tests to send off to the specialist hospital in Oxford and urine tests too.
Finley’s big brother Jack will be going into hospital as he is having his feeding tube changed on Monday. He is very anxious about this and it never goes smoothly. He will be having a general anaesthetic and will be home the same day but he is very scared about it as hates hospitals and needles and is distrusting after being through this more times that he can remember.
First though, we have a birthday boy. Finley, our brave, beautiful, cheeky, loud, adorable boy, is 4!! He really has come a long way since he was born, that tiny preemie who spent his first days on a ventilator fighting for his life and has been fighting ever since and he is amazing.
We are really grateful for all the post that we have received for Finley, Jack and Olivia. It really is appreciated and makes a massive difference to our day. It can make a lousy day happy again because they get a card or letter that makes them smile. Thank you.
Update 30th April 2014
Finley is still having problems with his feeding tube. The stoma is too loose and this means that acid is leaking out. When it leaks out it burns the skin and makes it very sore and painful for him.
He is still growing staph in his swabs and also recently had a swab positive for a yeast infection. It has just been endless. We have been in touch with Finley’s surgeon and they have decided that the site needs to be re-sited. This means removing the whole tube completely and starting again in another location on his stomach. This will hopefully allow the skin to heal up. We are just waiting for a date for this now.
We just had an appointment for eye clinic to check for any pressure in his brain as he had been head banging and rubbing his eyes all the time and the cyst that is in his brain is just behind his eye so they keep tabs on it. As far as they can see it looks reassuring.
We have neurology appointments coming up to check the results of his microarray and other tests that he had done. We found out that there is a deletion on one of Finley’s chromosomes but unsure whether this is related to any of his issues/a chance for a diagnosis or not. We will have to wait and see.
Good news today is that Finley got a school place for September. We got our first choice which is the school he already attends the preschool in and his sister goes to. This will help transition as it is the same staff and building that he is used to. He just has to learn to stay all day. It’s great as the staff already know him and have some experience of looking after him. They will have to up their game though as twice as much time there means twice as much care. We will start getting them ready for that as soon as our community nurse has arranged a meeting to see what support will be needed for when he is there a full day.
Update 9th March 2014
Since our last update Finley has had two emergency tube changes and the last one last year was a long job. As always, we had to go into hospital for iv fluids to keep Finley’s blood sugars up in a good range. We had the tube replaced and it was in angioplasty theatre so Finley got the surprise of his mummy dressing up in scrubs. It seemed like an easy placement but when we tried to start feeds it didn’t go well. Finley was retching, floppy and in pain, so we had to stop them almost immediately. The tube placement was checked and was fine but it took a week for us to be able to get full feeds running.
In November, Finley’s reflux was awful and he ended up in the hospital having aspirated. We were sent home with inhalers to try and clear his chest which have helped him when he gets wheezy but sadly he is still refluxing a lot and his medication has only limited use.
We have lost our gastro doctor as well since our last update. We went for our appointment and it was a shambles; the doctor had no notes, didn’t know what was going on. They suggested that Finley might need a surgery that he had already had and ended our appointment with ‘you seem to be doing a good job so keep going, he might grow out of it’. He didn’t realise that it wasn’t just reflux that was going on and didn’t seem bothered so we won’t be seeing him again and are on the look out for a good gastro doctor who will actually take time to listen and try and help us.
We all had a great Christmas at home, lots of noise and gifts. We absolutely loved the elf parcels that we were sent from the wonderful Post Pals volunteers and I was humbled and a little emotional about the effort that had gone into the gifts and how much love there was around the children this year.
This year so far has been a bit of a blur, it seems to have flown by in a blitz of appointments. Finley has been seen by wheelchair services, who are going to get him a chair that will support him when needed. He has had new boots and new insoles made. We have also seen a very lovely neurologist who was actually interested in our history and wanted to look into congenital myasthenia syndromes for Finley as he seemed to meet some of the criteria for this. She was surprised that with three similar children that we weren’t followed by genetics for studies and was arranging this for us.
We have been drowning under Disability Living Allowance forms. For those who don’t know, you have to fill out a 43 page form detailing everything wrong with your child and everything you need to do for them. It is a miserable form to fill out and then provide evidence just for them to scrutinise everything. I am unlucky in that all three of the kids forms are due in the same 5 month period so I have back to back forms to fill out. My poor printer.
Finley has also developed a new trick. Every so often his circulation to his fingers, hands or feet just stops, it just goes drip white and waxy. It reminds me of raynauds syndrome but he isn’t always cold when it happens and it doesn’t happen every time he is cold, so it’s a mystery. It’s just another thing to bring up with the doctor when we see them next.
More recently finley has been having a lot of problems with his feeding tube site. The actual stoma around the tube rather than the tube. It has been sore and leaky for 3 months now, getting over granulated and bleeding. Six weeks ago it was swabbed and we found out that Finley has MRSA. Just around the tube site. It has been a nightmare. We had a week of clarithromycin to try and clear it and have been using anti-microbial dressing on his tummy but it has still got worse. It is now breaking down as the hole is getting bigger around the tube causing acid and feeds to leak out which is then irritating the skin. Our nurse has just re-swabbed it yesterday and we are waiting to see if it is still MRSA and if so what we need to do. There is talk of having to go in for iv antibiotics but we are hoping to avoid that if possible. We need to get it better as Finley has started waking up through the night crying that his tummy hurts and that it is itchy.
Update 2nd November 2013
We have had a nice lull in appointments this month, it has been nice to not have to run around frantic. We did manage to speak with the disability social worker this month regarding respite that we have never had before. Whilst she was here she was asking about school and I told her about the concerns that we have about supervision and about them not changing his nappy. She has spoken with school and called a meeting with them about Finley to discuss all of this. I’m feeling nervous and guilty now but will have to put my big girl pants on and get on with it.
We finally heard from neurology and they will be seeing us next month along with a follow up gastro appointment and getting Finley’s eyes checked. I have a heart scan booked for myself next month too. So it’s stepping back up again but it was good to have the break.
Update 29th September 2013
Finley started school this month which has been so nerve racking for us all. The school didn’t realise what they were getting. This on top of several hospital admissions has made a really hard month for us all. School don’t know Finley yet so are slowly trying to pick up his quirks and ring me in for little things. I still worry sending him everyday but I think after this month they have finally seen just how quickly Finley’s health can change.
He was at school a week last Wednesday and had a reasonable day and by bedtime was in an ambulance to the big city hospital. His jejunal feeding tube had displaced and his gut had rejected it back into his stomach so he could no longer be safely fed. This led to iv fluids and a trip to radiology to have it replaced.
Saturday we had a trip to London, whilst on the train the end came off his gastrostomy tube and took the jejunostomy tube out with it. We were stuck on the train in the middle of nowhere panicking that we needed urgent medical treatment. Thankfully a friend told us to go to UCLH hospital in London. Here they placed an NJ tube which is a tube from his nose right down into his bowel. This tube took 10 hours to place, lots of pinning down and pushing it further into his nose. Every 30 minutes they came to push it in. Finley needed yet another iv. Three attempts to get access leaving him with three big bruises.
We managed to leave the hospital the next day with the NJ tube in and got to the wonderful believe in magic party, which was the highlight of the month really. He was draining loads of bile from his stomach after it had been upset so much. This caused a problem for school as they couldn’t manage it and then on Wednesday night the NJ tube came out again, requiring another mad dash to the city hospital for iv fluids. We finally managed to get out gj tube put back in on Thursday and Finley was so so brave. He laid and let them replace it, probably desperate to get home and no more cannulas.
I’m definitely hoping that next month is better for us all. It Is so hard on Finley to have to go through all of this and I was so tired from staying up 3 nights in a week. The big kids were upset that we had to leave them again and tired because they had to get up early to go to my sisters so that my husband could go to work. It hits everyone when someone is sick.
Our post has kept us all going. It is lovely to get a smile when life is hard.
Update 16th September 2013
I have had an absolute nightmare this month trying to get everything ready for Finley to start school. Trying to pull our medical team together to train and speak to school and school haven’t made it very easy. They seem to be keeping who his keyworker is a secret. Not sure if this is a ploy so that we don’t know who to harass!
Finley will be starting school without a statement as we were told that because his problems are medical and not educational then we need to collect evidence of need. This is making me want to panic and wrap my boy up. Our social worker wasn’t happy, yet everyone else keeps patting me on the back and telling me he will be fine. Or that all mums are upset when their child goes to school.
Finley has been miserable with reflux this month. We found out that his fundoplication surgery that he had to stop his reflux had herniated into his oesophagus making him uncomfortable and making his reflux come back. This will need surgery but because it is a bigger surgery to take the wrap down and build it up again, they would like to hold off as long as they can, so we have started back on reflux meds and will see how long we can get them to work for. I feel his pain, I hate heartburn.
We even managed a small caravanning holiday this year. We just went to the local seaside so we were close to home but the weather was sunny and Finley loved the beach. We made it through with only minor issues. We did have one trauma but it was Olivia. She picked Finley up and caught him funny and he pulled out her feeding tube and it fell onto the dance floor. Queue one screaming Olivia, one very confused Finley and a slightly green first aider who had to see me putting it back into her tummy and wrapping it up in a bandage until we could get back to the caravan to put the new one in. Once back in Olivia was fine and danced the night away. Brave kids I have here.
Finley would like to thank everyone for his birthday cards and gifts. He had a great birthday.
Update 24th July 2013
We have had a month of trying to get two children into school. Finley starts the school nursery in September and they aren’t used to dealing with children with complex medical problems. Jack, my eldest, is also starting high school and he will be going with a feeding tube, adhd and seizures and I don’t think they are used to any of those either really so lots of paperwork and stress for me.
We did have the fantastic opportunity of attending the Post Pals party and we all had a wonderful time. It was lovely meeting Vikki and Kate, other Pals and talking to other parents. Finley really enjoyed singing hands and we sang along. He had a roll in the ball pool, cried on the bouncy castle, even licked the icing off one of Holly’s dads wonderful cupcakes. We will forget that he also fell over and bust his lip and bled all over. The big kids loved everything from the big slide to the face paints. Both had several tattoos by the end of the day and oh my gosh, the raffle! The kids came away with all sorts and then amazing party bags.
I think a huge thank you to all the staff and volunteers is in order for all their hard work. A sorry to Becky Rideout for Jack repeatedly asking her for batteries for the remote control angry bird.
We had lovely weather the whole weekend and finished the weekend off with a trip to Chessington on the way home. We had some very happy but very tired children. Thank you.
Update 9th June 2013
Finley has been in the hospital for the last week. The little monkey managed to pull his jejunal tube out. He was chewing it and we think the end fell off.
Our local hospital can’t replace these tubes, so off to Leeds we went at 10pm.
We have a problem with Fin in that we don’t know why he needs to be jejunal fed, he has no diagnosis that explains why he is like he is or why his tummy doesn’t work. This means we have a hard time trying to explain why he needs the jej tube and this time was no exception.
The reg doctor comes around at about 2am trying to tell me that this was obviously a great opportunity to test Finley’s tummy. Giving it the whole speech of it worked for two years and we don’t know why it stopped working. I did tell them that nothing had changed and the only reason Finley had been doing well was because we had started to jej feed and vent the stomach, but what do I know? Gastrostomy feeds were started and for a couple of hours things weren’t too bad but suddenly Finley started sweating, he was crying in pain and he went floppy in my arms. It was awful. Eyes rolled and he started retching. Luckily the nurse was with us and she called the doctor.
We emptied all the feed from his stomach and were able to leave his tummy on free drain. He was getting more and more sweaty and his heart rate was racing. He was having a hypoglycemic attack with sugars at 3mmol/l. Finally the reg came back along with our much loved surgeon. They ordered the feed to be stopped and left off until the jejunal tube could be replaced. Fin had to get iv access and spent the next three days on fluids. He was getting glucose to stop the hypo and then extra fluids to replace what he was loosing from his g tube. All the rest of the day Finley was so low toned that he couldn’t even sit up in his buggy that has extra support. It was like having a newborn all because no one listened to me.
He then went to radiography to get his jej tube replaced. This is scary for such a young child but Fin was a hero. It’s a huge X-ray bed with the X-ray machine over you that moves. Big screens next to your head too. Then everyone, including your mum, dressed up funny in lead clothing, making you lay still. I’d be frightened, yet my 2 and a half year old hero laid there. He cried a little and got hot but he didn’t move. He let the staff do their job and got back to the ward. We had a slight mishap though as the tube placement hasn’t gone as well as we hoped and within 20 minutes of starting out feeds the jejunal port came out and the tube fell out. This was heart breaking. Finley had to go back on iv fluids and we couldn’t come home. It also meant that we had to go through the whole scary X-ray machine again. Again, Finley did great and this time mummy made sure the end was secured properly and as soon as feeds were running again we started packing. I managed to speak to our surgeon whilst in there and our concern of still not knowing what’s going on with Finley’s gut and he has arranged some contrast tests to have before we see a gastro doctor to try and look into the issues more. And as awful as it was to see, the hospital have seen what happens when we try and feed Finley into his tummy.
It has been so good to be home and although both Finley and I have come home with chest infections, his tummy has been more settled and we are very glad to have our much needed jejunal tube back in place.
Update 29th April 2013
We have had many appointments this month, mostly for Finley and some for his brother and sister. Lots of extra bits to add to our list. We were assessed by a new physio and a rheumatologist that were surprised with just how hypermobile he is and added some official words to our list of symptoms such as global hypotonia and global hypermobility. It was shock to add sensory processing problems, proprioception dysfunction, poor saving reactions and depth perception, balance and coordination difficulties, poor core stability and muscle power to maintain erect posture with challenging activities, difficulty in motor planning, judging distances, negotiating obstacles etc and poor foot posture. They don’t change Finley as a person but add extra words when explaining what is wrong with our little man.
He has needed three different types of antibiotics this month to try and clear an infection in his jejunostomy tube. We need to clear it as while his body is fighting the infection he is reacting to everything again. His face is red and angry all the time. His tummy is permanently pot bellied now and he has been getting a sore bum. We are still waiting for a new gastro referral to try and get to the bottom of why his tummy suddenly stopped working and that he started to react to things that he hadn’t ever had a problem with before.
We are also still waiting on a cardiology referral so that he can get an ECHO done of his heart to check for floppy heart valves. He already has persistent tachycardia but needs this scan doing soon.
We have therapy services coming out Friday to see if his current seating is suitable for him and will be asking if there is anything else available to help us at home.
We have been so overwhelmed in a good way with the post that we have received as a family. It is such a great feeling that people have thought of us and we’re so grateful for the smiles that have been put on the kids faces. They have had so much excitement opening mail. It makes life a bit happier. We are very grateful to everyone who has found the time to send a card or gift to Finley and his siblings this month. It is amazing how much they cheer them up on a bad day and we have been humbled by peoples generosity. Thank you everyone.