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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    Finlee's Story

    This is Finlee's story as told by his Grandparents

     

    Finlee Thomas Grimshaw (DOB : 18.09.2009) - aged 2 years and, what an eventful two years it has been!

    This is our story of Finlee living with Pulmonary Atresia with Ventricular Septal Defect (VSD).


    I cleary remember the day Emma (Finlee's mum) told me she was pregnant.    Both of us (Emma's parents) were not very happy when she first told us but, we supported her as she said she wanted the baby.    I took Emma to all her Ante-natal appointments and went to the scan.  When it came to the 20-week scan, Emma wanted to know what she was having but, I didn't want to know so when it came to Emma being told, I left the room.  Emma came out of the scan room with a great big beaming smile on her face and asked if I wanted to know.   I said 'no' I wanted to wait and see.     We went shopping to Mothercare on the way home from the Hospital and I was looking at all colours at the same time as looking at Emma, but she wasn't giving nothing away.   It took me all of about 3 days before I couldn't stand it any longer and said to Emma, 'go on tell me, I can't wait' and she said 'little boy' and she was absolutely delighted.

     

    The pregnancy went very well and nobody at the Hospital raised any concerns.  Emma chose me as her birthing partner and I was really pleased.    Well I clearly remember  the day she went into labour.  the pains had started a couple of days before but not very strong and, on the 17th August 2009, I had just got home from work, was having a cup of tea and something to eat when Emma rang me to say her pains were getting really strong.  My response was 'she will have to wait, I had just got home from work and was having a cup of tea'!.    About 15 minutes later, she rang me again to say 'no I really should go down to where she was living'.  I got to the flat and she was pacing the floor.    We rang the Hospital and they told us to come down.   Off we went in the car and got to the Hospital about 6pm, up to the maternity unit where she was checked over and told by the midwife that she had ages to wait.  We sat around for a little while when Emma's dad arrived.    Emma was checked over again and still told that she had ages to wait and, we could either sit around at the Hospital or go home.    Emma's dad, told her to wait at the hospital as 'he didn't want a mess in his car'!.    Typical reaction from a man I suppose!.

     

    Anyway the labour pains came on stronger and stronger and Emma was pacing the maternity unit, shouting some not very choice words and, was getting angry because all the midwives were just ignoring her but, they knew their job and must be used to all the pacing etc.   Anyway eventually 'the little man' arrived into this world at 1.03am on the 18th August 2009.    He was small but, no concerns really shown.  He was put in an incubator as he was not keeping his body temperature and every time they brought him out of the incubator, his temperature went down again so, back in he went with more and more clothes on.   They did not seem overly worried about him so neither were we.  The day after, Emma and Finlee were discharged from Hospital and she decided to go straight back to her own flat instead of with us for a few days but, i did take the week off work to help her.  She had daily visits from the Midwife and Health Visitor and, although we had concerns that Finlee was very blue around his eyes, nose, mouth, fingers and toes, when we asked the Midwife and Health Visitor, all they said was he is fine as he is warm.  Needless to say after you read below what happened, Emma has now lost all faith in the local Midwife and Health Visitor.    One morning, Emma rang me to say she was worried about Finlee as he had not had a good night's sleep and his breathing was really funny and he was making a lot of noises.  I went to pick them both up to come to our house for the day to see how things would go and during the day, although Finlee slept a lot, in himself he seemed fine.   Just as we were about to pack them up to take them both back to the flat about 6pm, Finlee was very sick and, his breathing became very heavy and he was really struggling to breath.     We rang the Hospital and they asked us to take him down and, as we only live about 15-20 minute drive we did. I remember as we were driving there, I said we will probably be driving back home within the hour.  Little did I know what we were in for!! 

     

    Well we got to the A & E Department where the duty GP checked him over.    Finlee's breathing was still funny and he had a blotchy appearance to his skin.    The GP asked us how long he had been breathing so fast (his heart rate was 180) and we said he had not been well during the day.    He wanted another Doctor to check him over so we went back into the A & E Department to wait.  A Nurse came out, pressed her finger to Finlee's forehead and, from there, everything just seemed to go in a haze.    She picked Finlee from our arms and, ran into the Resusitation Unit.  We followed  and in the very short space of time it took us to get there, there were 5 doctors/nursers around him.   Emma's Dad waited outside in the A & E Unit.  Both I and Emma stood back while the Doctors were around Finlee's bed and by this time, I was trying to stay strong because Emma was extremely worried, crying and shouting 'what are they doing to my baby, tell them to leave him alone'.    We then heard someone say 'heart' so I sent Emma out to her dad and I waited in the Unit.    Emma went to her dad and he asked what was happening, by this time she was absolutely beside herself and all she could say was 'my baby, there is something wrong with his heart'.   His heart rate was 180 and saturation levels 38.

     

    We were all then told to go and sit in a Family Room and, when you are told this, you think of all sorts of unimaginable things.   It seemed like hours sitting around before a Consultant came in and told us exactly what was wrong.   Finlee's heart was very poorly, he needed to get to Bristol Children's Hospital and, they had spoken to Bristol but, they did not have any beds available so he was to be kept in the ICU for the night.   He then explained to us that Finlee had a Pulmonary Atresia with VSD and, was very poorly.     Emma stayed the night in the ICU with him and we went home.  We got back to the Hospital the following morning quite early to find out what was happening.  Arrangements were being made to transport Finlee by ambulance to Bristol and we were told that we would have to follow in the car with Emma, as there was not room for Emma in the ambulance as there would be Finlee in his Incubator, a Doctor, Nurse, Paramedic and driver.   We sat around while the arrangements were made and then the Ambulance Paramedic and Driver came to collect Finlee.   I clearly recall the Ambulance Driver telling us not to try and keep up with them on the motorway and, if we saw them drive past with 'blue lights' not to panic, certainly do not try and keep up with them as, using their 'blue lights' was their way of getting through the traffic on the motorway.

     

    Well we were driving along the motorway and got, I think, nearly as far as Taunton when I said to Keith, it is strange that we have not seen the ambulance as we had left the Hospital about 20 minutes before them when, all of a sudden, up came the ambulance, on the hard shoulder of the motorway with blue lights and siren going.         We didn't panic as we were told not to and just carried on.   We eventually got to Bristol and by the time we had got to Ward 32, Finlee was there, settled having an Echo and other tests.    After all the tests, Mr Parry, Finlee's surgeon them came to speak to us to tell us exactly what was wrong and how they intended treating him.  He needed emergency surgery but, was not strong enough to go down to theatre straight away so he was kept on medications for a couple of days until he was stronger.   He needed OHS but, was not strong enough but they had to do something so put in a left hand BT shunt.  Mr Parry told us that if we had left it another 24 hours, Finlee would not be with us today!

     

    Down to theatre he went and we all went into Bristol City Centre to try and occupy our minds as they told us that Finlee would be in surgery for 3 hours and they would ring Emma when Finlee was out of theatre  but, we were all just wandering around, not taking anything in.   After about 3 hours we hadn't heard anything so we made our way back to the Hospital and went into the parents room on PICU, again just sitting around waiting.   By now it was probably about 4pm.  We were just sitting and waiting and it was not until about 7pm when a Nurse from PICU came into the waiting room asking where we had been as they had been trying to ring Emma for ages.  


    Finlee after surgeryIt transpires that they were ringing the wrong number.  Anyway we went to see Finlee and he was being looked after by Julia, a German Nurse and she was lovely.    We were very overawed by all the machinery, lines, wires and Finlee being on a Ventilator.   The machines were all beeping and alarms ringing but we were told, 'don't panic unless you see us panic'.      Julia' Finlee's Nurse did say that he was keeping them all on their toes as apparently when he came out of surgery, he crashed and it was all systems go but, they got him back and he was fine.

     


    Finlee in HospitalAfter a few days, Finlee was taken back to Ward 32 and he continued his recovery.    He recovered very well from after his initial episode in PICU where he crashed.    He was then discharged and came home.   

     

    Several trips back and forth to Bristol to plan the remainder of his surgery and, it was planned on doing his OHS in about April 2010 and we went to the pre-admin appointment a week before and all was well so plans put in place for admission.   a Few days before his admission, he picked up a bug and was admitted to Torbay Hospital,    Torbay kept in touch with Bristol and it was decided that it was too risky to do his OHS but, he was transferred to Bristol, again by ambulance.    When we got to Bristol his saturation levels were between low/high 50s and after tests, it was discovered that his left BT shunt was getting blocked so they needed to do something else but, he was too ill to have OHS to go on the by-pass machine so they decided to put in a right hand BT shunt.     This was done and same procedure as before, in PICU for a few days, then back onto Ward 32.  


    Sofia in HospitalThis time, Finlee being Finlee, decided that he liked being on Ward 32 so thought he would get ill and picked up Norovirus and was very ill, so much so, that they were talking about taking him back down to PICU but, within 24 hours of being seriously ill, he seemed to pick up again and they kept him on Ward 32 for the remainder of his recovery.

     

    Discharged home and, again, plans put in place for his OHS which was then being dated for around August 2010.  Off we go to pre-admin appointment and, again, all was well and arrangements made for admission but, again Finlee decided he was having none of this going back to Bristol and thought he would get ill again which he did, being admitted to Torbay so the OHS was postponed.    Eventually rearranged for November 2010 and, this time, he was well enough.  He had the surgery on the Monday and we visited him in PICU and, again, covered in wires and tubes, on a ventilator and, the nurse looking after him said he was, again, keeping them on their toes because, despite being sedated, he tried to make an 'escape' bid from the bed by rolling over on his tummy and trying to crawl out of the bed, they had to boost his medication to 'knock' him out again but, he was back on Ward 32 in a couple of days and was discharged home on the Saturday after, amazing really when you think what he went through.

     


    Finlee homeHe is now back home and getting stronger by the day.  He does need more surgery but, hopefully not for a few years yet but it all depends on how he grows.  To look at him, you would never think he was as ill as he was and, that he has a CHD child unless you see all his little scars but, he is a fighter and a true CHD Warrier.

     


    Finlee Home

     

     

     

     

     

     

     

    Well that is our story from beginning to present. - Gwen and Keith Grimshaw (Grandparents to Finlee Thomas Grimshaw)


     

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