285 days and finally the finishing post in sight

Discharge Day – FINALLY

We couldn’t believe it when we got up on the morning of 15^th June 2010.  Kaycee was 9 ½ months old.   We hadn’t planned for any of this but we packed the car up and got things sorted.  We went upstairs and said our goodbyes to the staff, doctors, parents etc.   We were so scared but yet excited to finally be at this stage in her life.  A stage at many points of her SCBU stay were threatened by illness and her being so critical.    I thought I would have been in floods of tears leaving the unit.  After all they had saved my daughter’s life and made this day happen.  

I wasn’t at all upset to leave the unit.  One of our favourite nurses was upset; she was a fab nurse – missed very much.    I was relieved to finally get out of hospital as a family.   Loading Kaycee in the car was hilarious, the nursing staff weren’t allowed to help get Kaycee into the car due to policies.  So trying to fasten a baby seat in a car was a new thing to us and was bloody complicated.   We were that flustered & nervous it took us ages.  

Finally we were set to go.   We drove off and I remember thinking, stop panicking its going to fine.   Michael sat in the back with Kaycee and never once took his eyes off her.   Looking back if someone would have filmed us it would be a huge hit on u tube.   I drove like a learner, which probably made me more nervous and the possibly more dangerous.    

We arrived home, the journey took longer than usual due to me driving extra careful.    We took Kaycee in her home for the first time, placed her car seat on the floor and took a deep breathe.    I couldn’t believe that was it.  Kaycee was no longer in hospital.   Now what …

Home

With Kaycee being our first baby and all the plans you have whilst pregnant of how you will cope and how you will do this just went out of the window.   We didn’t have a set regime in place and if we did we didn’t follow it from hospital.   Within hours of being home it felt right and the 9 ½ months we spent on SCBU seemed miles away.   Kaycee on the other hand loved her new house.  With being a bit older you could see the difference in her, it was like she had been given a new lease of life.   She was more interactive.   When we put the TV on, wow it was like she had won the lottery.   She found it amazing lying there on the rug.   

The first night was hard.   Kaycee was too big for a moses basket and her bedroom was all done and the cot was in there.   So we decided we would camp out in Kaycee’s room.   We got all our bedding and made a bed on the floor and put her in bed.      New surroundings got the better of Kaycee and she wasn’t impressed with the massive change in her life.  We had a very restless night. 

A few days passed and Kaycee seemed to settle.   We got ourselves in a little routine and was finding it pretty straight forward.      We loved our little family life at home, it was amazing.   

Things soon felt normal again and off Michael went back to work.

Something inside screaming get help.

Kaycee was home for about 4 weeks straight and then she seemed to get a bit snuffly.  Obviously this was a sign she had caught a bug or something and from past experience we were a bit anxious to let her ride it out.    We have help from the Community Nurse due to her being on home oxygen.   So I rang them and asked if they could bob round just for a fresh pair of eyes point of view. 

As soon as they came they knew she wasn’t right.  They put her oxygen saturations monitor on and she was sitting low 80’s.   I could feel my body tense up and I felt sick.     The nurses told me that they would need to get her to the hospital.    The rung the ambulance because she is on the direct admission list the ambulance knows of Kaycee and knows to come ASAP. 

On arriving at the hospital we were directed straight to a ward.   She was admitted into a cubicle and seen by the doctors.   All the doctors knew Kaycee because of neonates so that was probably the only advantage of being on this ward.   It was hard to adjust to how they worked because on a neonatal unit they were closely watched.  Here you were left to defend for yourself, well not that extreme.  

Kaycee had loads of tests done, poked all day and then they finally decided she had bronchiolitis.  As we have learnt over the months every baby admitted to Oldham has this.   At the time we were heartbroken.  She had already been through so much and to top it off here we was back in OLDHAM.   All the memories from that horrible day were hanging over me.    

Kaycee’s oxygen went up sky high but they just put a mask on her, she tolerated this quite well.   She was treated with antibiotics and within the week stay she was stable and back in her normal amount of oxygen to go home.   So off we back went home.   

10 days passed and Kaycee seemed to be back to her normal self.  

Another date inscribed in my mind

Then one night the alarm on Kaycee’s monitor went off and her saturations were low again.   Within minutes of this happening we had made the decision to call the ambulance and get her looked at.   The ambulance again came within minutes and Kaycee was transferred back to Oldham.    As we arrived Kaycee needed more oxygen and a mask was placed on her face again.  

Again she was diagnosed with bronchiolitis.   We thought another week and she would be fine. 

Her consultant who had been with her since Scbu days came up to see her and prescribed her a nebuliser to help move some of the rubbish on her lungs.   Kaycee had this but then had a really bad reaction to it.    She went floppy and her saturations went low.  

At the time Michael was with her as I had nipped home by strict orders of Kaycee’s consultant to get a long relaxing bath and try and relax a bit.   That never happened as I got to the corner of our street and pulled up because my phone was ringing.   I couldn’t believe that I was in this situation again.   I needed to be at the hospital within minutes and I found myself back to the situation where I didn’t feel I was making much progress on the journey just making it more dangerous for me and other drivers.  

When I arrived at the hospital Kaycee had been sorted out but was in loads of oxygen.   Then the dreaded news none of us wanted to hear. 

Kaycee’s consultant had been in talks with the doctors down at Central Manchester Children’s Hospital.   They have decided that Kaycee needs additional care to what she was getting.   She was to be transferred down to that hospital.   Initially we thought this will be good because she will be looked at properly and the added bonus we were getting out of Oldham.    Then the news we didn’t want to hear … BUT (and a massive BUT) she will have to be vented to get her down there safely.  

Journey begins in PICU

At Oldham Kaycee had a nebuliser which totally knocked her off and dropped her sats massively.  It was scary.   She went all floppy and funny coloured.   From what was going to be a controlled event turned into a nightmare.   All the nurses were flapping.  Kaycee got moved to another room which was classed as a high dependency room.   Oldham only had one of these because they rarely came across babies like Kaycee.   We knew this on previous admission and due to her horrible stay in SCBU.   But being forgiving parents we trusted them with our daughters life again.    This was starting to wear very thin though as the more they were doing to Kaycee the more she got distressed.      The transport had been booked but they weren’t able to get to Kaycee until 7pm.   This meant that for the next 4 hours Kaycee would have to be tubed, sedated and kept stable.  

Obviously we were at Oldham and nothing is ever simple.   We had to kiss Kaycee and go out of the room.  It was like torture for us.  All I wanted to do was hold my baby and stop her being so upset whilst the doctors poked and prodded at her.   They thought Kaycee had been on the vent for 171 days which in fact it was nothing like that at all, possibly only 56 or something so pety to what they were stating so they were scared to put her on the vent which was even worse because they decided for the next 3 hours they would “bag her” (put an oxygen mask over her face and give her breathes) It was unbelievable.    

The transport finally arrived at 8pm that evening.   This had been going on since 2pm.   Was a nightmare for us and obviously for Kaycee.   It took another 4 hours for them to stable Kaycee and get her sorted for transport.   This was the first time at midnight that we were able to see our gorgeous girl.   She didn’t look the best, in fact now when I look at the picture of her from that day I see how poorly she actually was.

The ambulance set off and we went just before them.    We discussed the events in the car and reassured each other that everything will be fine.   We were mortified that Oldham had let us down again!   I think we both agree that we will never put Kaycee’s life in their hands EVER again.  

On arriving at Central Manchester Children’s Hospital it was scary walking down the long corridor of PICU entrance.   Then all of a sudden the door flew open and they were running in with Kaycee.   She had taken a massive turn for the worse on the journey down and was having to be “bagged” into PICU.     The nurse told us to sit in the parent’s room and wait.  

Again the wait for agonising.   It wasn’t until 2:30am that we actually got to see Kaycee.   It was frightening. Nothing like the SCBU days, it was far much bigger and scarier and so much medical equipment.   I couldn’t believe that it was all for Kaycee.   I was in shock and shaken from the previous events.   We were shattered and needed to get some sleep.   Kaycee was stable that was the main thing.  

The next thing was to correct what Oldham had told Central Manchester because their hand over on Kaycee was very shocking, nothing was true well more like Chinese whispers which was quite scary.  It’s just a good job we were there to tell them the story of Kaycee’s life.  

Quick Admissions

We were home for a week and everything was going ok.   Then one morning of 16^th September 2011, I noticed Kaycee didn’t look the best.  I said to Michael that we could go on a quick road trip down to Manchester and present ourselves at A&E there.   We both didn’t trust Oldham not after all that’s happened there.   So we decided because she was stable enough we would put her in the car and drive to A&E.  Don’t get me wrong if Kaycee needed 999 I would never put her life at risk and would let the ambulance take her to Oldham if she needed it.   We have always agreed that.   Just at times when we can catch her before she crashes we rather admit her into Manchester as all the teams are under one roof and after all they do know her.  

Upon arriving at A&E because Kaycee was only an inpatient with a PICU stay the week before they admitted her to the ward straight away.  She was x-rayed and bloods taken upon admission.    She was diagnosed with aspirated pneumonia.  They thought because she had started taking interest to her food again that it might have gone down the wrong hole, and because her lungs are poorly some had gone onto them.   Kaycee in herself was well, so they gave her an antibiotic for aspirating, and a two night stay we were off home again. 

Although she had done this and was being treated she wasn’t 100% at home, and we were getting a bit twitchy and questioning whether she should have come home.   She didn’t seem to unwell to warrant another drive to Manchester so we just left it and pushed it to the back of our mind.   She started to get a bit snotty, but nothing that an oxygen dependant baby wouldn’t normally be like.    Again she went off her food and because she was teething it was easy to blame that and to be honest if you had just met Kaycee you would say she had all the signs of a typical teething baby.   So we just gave her antibiotics and the usual teething things.   A week passed and she wasn’t improving.  

31^st September, I decided to take her back to Manchester.   Michael was working so his mum came down with me so I wasn’t on my own in the car.   Again Kaycee got admitted to a ward.   She only needed a bit of suction as the snot in her nose had got hard with the oxygen (I know that sounds disgusting –sorry)  So in the morning she was discharged.    A lovely quick admission.

That day she was perfect, back to her happy self.   It was the morning of Corrie’s first anniversary. We have split the girls days, So Kaycee obviously has her birth date (2^nd September) as her day and Corrie has the day we lay her to rest (1^st October) purely just so its not taking Kaycee’s birthday away and it’s a way of making sure Corrie isn’t forgotten too.  

On leaving the hospital we decided that we can’t always wrap Kaycee up in cotton wool, so we decided to go out for pub lunch.   We went out and Kaycee’s first proper outing.  It was fantastic and felt like we were a normal family.  

10th October 2010

Leading up to the 10^th October as said before Kaycee wasn’t 100%.   She had to have the flu jab with it being her first proper winter in the community.  She was also due her 12months immunisations and had an injection to protect her from RSV (bronchiolitis).  So within the three weeks of being home she had one jab a week.   To add to them jabs she was teething.  This got too much for her and she got a chest infection.   The Sunday evening she went to sleep and was fine then in the early hours she started to work a little bit harder and dropped her sats in the night.   After a quick discussion with Michael we decided she was ok for a drive down to Manchester as we had a saturations monitor and to be honest once she was awake and dressed she was more perky.    So off we went in the car again.    On the way down Kaycee was smiling and looking at the lights.  She had never been out in the evening before so this was a new thing.   We had the monitor on her and although she was in 2 litres of oxygen we knew she was ok and safe so we just carried on past Oldham hospital onto the motorway to Manchester.  

On arriving, we got Kaycee in the pram and she looked better than she had over the past few weeks.   We was joking and wondering whether to take home because she actually looked fine, and we didn’t want to waste the nurses and doctors time just to be sent home the day after.    We decided that we would get her looked at just to make sure.

Once we were in A&E, we waited for the nurse to assess Kaycee.  We went into the side room and I took Kaycee’s coat off.   Within seconds she was screaming and crying.  Kaycee NEVER cries, I know that sounds silly but she doesn’t unless something is up.   I looked at her and she was BLUE.   The nurse panicked and we had to run through to the High Dependency part of A&E which was just behind the room we were in.   A monitor was put on Kaycee and she was saturating at 63, which is obviously not good.   Kaycee was very distressed and upset as she wasn’t getting enough oxygen.   She was placed on a mask and she calmed down.    The doctor was rushed down and he took bloods, put a canula in her head and got in contact with her consultant.     Because Kaycee was Kaycee they decided to admit her and this time she was admitted to PICU with the plan to put her on CPAP that helps her breath.   

We were transferred to PICU later that morning.   The staff welcomed us back, in the nicest way possible.    We just thought she would need a bit of extra support get over what she had and then get put back on a ward.    We couldn’t have been more wrong.

Kaycee managed to sort herself out once she had calmed down and put on the machine, her breathing calmed down and everything looked a bit better.    48 hours passed and they were talks of Kaycee being moved to High Dependency as she was classed as “Stable”.    The next few hours passed and things weren’t looking the best.   Kaycee’s oxygen requirements went up to 100% and she was struggling again.    Then all of sudden everyone was running around and within the matter of 15 minutes a tube was being placed down Kaycee’s throat and she was back on the vent.    Again backwards we went, what felt like a 100 steps. 

We felt deflated seeing Kaycee like this again.   How many more times could one little girl do this.   To make matters worse every day since arriving on PICU the doctors had dragged us in the office for what we called “doom chats”.   Kaycee won’t survive written across their heads.   They told us with babies like Kaycee what the general trend is her PICU admissions will become more frequent as the winter progresses until eventually us as the parents have had enough and we want to let her go.  I remember thinking in my head are you for real, when “we” have had enough?   How could they talk about my baby in this manner.   I don’t think so this is my baby and my baby fights and continuously proves the doctors wrong.   Fair enough if one day she’s given her all and we know in our hearts that she has had enough then fair enough but we believe as parents if Kaycee fights and gets herself well then that is obvious to us that she wants to be here. 

One of the doctors had arranged a meeting for us with a Chronic Lung Disease Specialist, initially we thought this would benefit us loads because we would be able to ask questions that we have never wanted to ask for ages and see if we could shed a bit more light on this disease that our daughter has.    We went to the “doom room” for the chat.   When we got in the room the lady introduced herself.   We couldn’t believe what we were hearing.  It was a lady from Palative Care.   I sat there and thought to myself let me see what she has to say, because if she starts talking about my girl not being well and the future I would walk out, as we had only just come out of a doom chat.   She started talking and her first question was “Have you thought about Kaycee’s funeral arrangements?” … OMG I couldn’t believe what she had just said, I asked her why she was asking and she told me that she isn’t going to survive.    I remember going mad, I asked her if she was god.  I gave her a right dressing down and said she had no right to be having this conversation with us when my little girl was fighting for her life in there.   We stayed and put her to rights.   To be honest I don’t think she had been given the correct information from the doctors and even she was shocked of how we thought about things.   It didn’t stop us being angry and upset though.   Even the nurses couldn’t believe that this lady had come talking to us as they all knew that Kaycee wasn’t well but she was an ex prem and it was expected that they have a rocky time during the winter, especially if it is their first winter.  

Kaycee did better this time round coming off the vent.  To the point where all the doctors were surprised.   They didn’t believe that the flu jab and all the other jabs had initially knocked her off and then on top she got chesty.   Kaycee also struggles with fluid retention due to her hole she has in her heart so all this doesn’t help Kaycee at all.    The doctors decided not to send her over to High Dependency due to the fact she was due her 2^nd part of her flu jab.   Kaycee had her jab and again it knocked her off again.   Finally the doctors could see what we had been saying and agreed she obviously doesn’t like jabs.  

Back to a ward

5^th November 2011 Kaycee was finally off PICU and back to a ward.   This time Kaycee was staying in a little bit longer because her diuretics (for water retention) had to be established before she was able to be discharged.   Because Kaycee is dependent on them this wasn’t easy.   At the same time Kaycee had caught a tummy bug which had made her poorly again, but respiratory wise she was fine nothing was affected.   Her feeds were stopped and started continuously because she kept vomiting.   We also had a tant to the doctors because we wanted things sorting a bit more quickly than they were being.   She was outstanding a number of things and we had been waiting for them a long time and kept getting pushed to the back of the list due to her admissions in PICU.   So the relevant teams were contacted and dates were arranged for Kaycee to be seen.   Obviously nothing is quick in the NHS and being an inpatient didn’t warrant you a quicker referral unless in emergency. 

For weeks Kaycee’s feeds were stopped and started.   They then decided that she was lactose intolerant again.  So they changed her milk feeds.   She started to tolerate these slowly and things started moving forwards again.   We tried to get her feed regime back to normal, Kaycee wasn’t tolerating this now and again her feeds got stopped again.  We felt like were going in circles, just for a change.    The feeds were the only reason Kaycee was still an inpatient in the Hospital, so this to us was frustrating as we didn’t want her to pick anything up and we wanted to get her home for Christmas.  

Two weeks before the Christmas period Kaycee’s oxygen started to go up.   She was poked and prodded again to see what was causing this.   She had caught RSV, something she couldn’t afford to catch really as this could set her back as far as the vent.   We hated her wearing a mask and unfortunately this was the only way forward.   So Kaycee was placed back on a mask again.   When Kaycee gets poorly again she retains fluid so she needs more diuretics.   We were so angry because we just constantly felt like we were getting nowhere at all with her and stuck in hospital.    

ENT were called and asked to look at Kaycee’s airways.   A doctor from ENT came and assessed Kaycee.   He told us she had large tonsils, adenoids and that an op would have to be performed to remove the same.   Finally something we could pin the extra oxygen requirements on.   This might explain all the other episodes, and why she ends up critical.   Obviously this was definitely too good to be true because a Consultant shot us right back down from ENT and said Kaycee was way to young to have these problems and it was definitely her lungs.   My word we was so upset that another doctor had said this and then we learnt it wasn’t that.   That was scrapped.  Back to not knowing why our girl keeps getting so ill other than bad lungs.

We was looking forward to a lovely Christmas

The week before Christmas Kaycee started to get worse and during the course of the week her oxygen kept going up.   The doctors just kept saying that the virus that she has is a nasty one and that she will ride it out.   We couldn’t believe what we were hearing.   This was the same baby that to them has no reserve, she has none to pick herself up and recover without the aid of machines.   We were so angry as for weeks we had been saying she isn’t well, please can something be done.

During the nights Kaycee’s saturations were dipping, because she sleeps with her mouth shut and because her nose was blocked she wasn’t receiving enough oxygen and the only way to make her saturate better was to poke her or move her onto her other side.  This obviously wasn’t a suitable way to treat a baby and it was tiring for me never mind poor Kaycee.  I was getting so upset with the nursing staff at the night time and really getting to the point of snapping.  

Christmas Eve was the worse night I have ever had with Kaycee.   All night she was very unsettled.   Kaycee never cries and I mean never.  Only if something is really really bothering her and obviously if she isn’t receiving enough oxygen she goes mad as this is the only way of her telling us … HELP!!! 

Christmas Day morning came and I was shattered.   I didn’t want it to be Christmas as this was not how we had planned to celebrating the same.   Kaycee’s doctor came in and we told her about the bad night and she didn’t seem too concerned.   She said that we might have to just accept lower saturations whilst she isn’t the best.   I wasn’t reluctant to accept this but she was the doctor.    During the course of the day Kaycee started to get worse.    Michael’s parents came and we tried to have a bit of a Christmas Day unwrapping presents and having a bit of a dinner.    Kaycee still wasn’t the best so we called the nurses to call the doctor.   This time we demanded something got done about it because we were all too familiar with the visits to PICU. 

It took several hours for the doctors to realise that Kaycee wasn’t getting any better but in fact worse.   They decided to take bloods and the usual stuff they normally do.    Everything was stable, but obviously looking at Kaycee clinically she didn’t look stable.     Again the doctors just said let’s just “sit on her” … We couldn’t believe what we were hearing.   We wanted to scream at them.   We knew she needed moving from a ward to High Dependency.    

Later that evening things went from bad to worse   Kaycee had a bath and seemed ok(ish) and we put her in bed usual routine.   She went sleep and then all of a sudden her saturations dropped to the 50’s.    That was the final straw.  Michael snapped.   PICU doctors were called as Kaycee was too unstable for the ward.   Which was obvious to us 2 weeks ago.   We were so angry by this and scared at the same time because we could see that Kaycee would need a vent again just to get herself back to how she was.  

Up came the doctor and told us that Kaycee was being transferred to PICU and they will assess her down there.     By this point Kaycee was in a bad way and the doctor needed to “bag her” (support her by hand) all the way down to PICU.      On arriving at PICU she was placed on the cpap.   She couldn’t cope on that and ended up on Bipap which gives you breathes.   If she couldn’t do this then she would need the vent.    The consultant that evening knew Kaycee well and just decided to give her the benefit of the doubt.   She wanted to make sure she was comfortable so she gave her medicine to sleep and extra diuretics to make her lungs less wet so she wasn’t fighting a massive battle to clear infection and water retention.     

24 hours later Kaycee was discharged to HDU.   This was a relief because it meant that she didn’t need the vent for extra support.  

Cardiologist v Respiratory – Cat fights.

Because initially when Kaycee got transferred from the ward to PICU they thought that she might have aspirated due to her severe reflux that she has.  So she was given antibiotics for her aspirating and an x-ray to check on this.   The x-ray didn’t confirm reflux but fluid retention.    That was it the respiratory were onto the cardiology team because this was getting all to frequent.    Cardiology and Respiratory had been arguing for weeks previous what was the main cause to Kaycee being so unwell.   Obviously none of the teams could agree what was causing more of a problem.   Was it her heart or lungs?   For us as parents it’s frustrating because you don’t need a degree to see that Kaycee’s problems were contributing TOGETHER not singular.   It was just annoying listening to them.    

Finally Cardiology agreed that Kaycee’s diuretics needing upping and to keep her more dry than she actually was.   They said that they would be seeking further advice from Liverpool with regarding to her heart as having loads of diuretics wasn’t normal for a baby.  So it was obvious that her ASD was contributing to her lung disease.   It felt like we were actually getting somewhere finally.  

Liverpool were informed of Kaycee they finally agreed to see her in Liverpool for a cardiac cath.   The appointment was booked and plans were made for once Kaycee was a bit better.    

Road Trip to Liverpool

After leaving HDU Kaycee went back to the ward.   She was back to her normal perky self, playing laughing and smiling.   A week passed and she started to get a bit unwell again.    Kaycee always started with an upper respiratory infection which if not caught in time she went worse with.   The doctors decided to give her extra diuretics again because of what had happened just a few weeks back.   Within a day she seemed to have sorted herself out, wasn’t working as hard or anything.   Her oxygen requirements had gone up an extra half a litre.   They weren’t concerned because clinically she was fine.   The doctors famous last words.   

The morning when the ambulance was booked for transferring Kaycee to Liverpool, we expressed our concerns about Kaycee going up there as she wasn’t herself.   She seemed to have got worse over the course of the evening.    Because the Cardiac Cath was the next day they didn’t want to not send her as this meant delaying something that needed doing.   So we just went along with it and thought that if Liverpool were concerned then they wouldn’t put her under an anaesthetic if it would put Kaycee at risk.

Michael went in the ambulance with Kaycee and I followed the ambulance in the car.   On arriving there we were placed in a cubicle and within half an hour a doctor had come to see us.   Kaycee got examined fully and we explained that she was in more oxygen than she when she was in Manchester.   They didn’t seem too concerned so the cardiac cath was still going ahead tomorrow.   This to us was a relief as it was another thing to tick off the long list of “Kaycee needs”.

The Consultant came in who was doing the cardiac cath.    He told us before he knew what the results were that this will not fix Kaycee.   Which we already knew.   He told us that an ASD at this age wasn’t problematic and that it was her lungs causing her the problem.    We knew that Kaycee had bad chronic lungs too.   The problem was that Liverpool had been asked on several occasions to take a look at Kaycee’s heart and they weren’t willing to due to her bad lungs.   So this Consultant had already diagnosed Kaycee before actually assessing her via the cardiac cath.   

Friday came and we had to wait all day before Kaycee went down.    This was probably the longest day ever waiting around for them to come get her as we didn’t have a time.     Kaycee went down at 3pm that afternoon.   We had to wait in her cubicle for her to return or to be told she was going to PICU as we didn’t know if she would need to be on the vent for a short time after the op.  

About 5:30pm we got a call and got told that Kaycee was in PICU.   She was off the vent but they were keeping her there for precaution because she had come off into more oxygen than she needed before the op.   The results weren’t really given to us but they said that the ASD wasn’t contributing and that it was her lungs.   We didn’t feel convinced.

We went down to PICU and walked into the cubicle and Kaycee.   It was so funny because she was sat up against a pillow and she thought it was great sitting there kicking her legs.   She got mega excited as soon as she seen us which made me feel so much better.  

Me&Michael got a room for the night because she would be staying there overnight in case she needed to be put back on the vent.    Kaycee was a good girl and got discharged back to the ward early hours of Saturday morning.  

We got to the ward and weren’t impressed with how Kaycee was.      She needed a mask again just to keep her saturations up.   It was like déjà vu all over again.    She also looked so puffy, but this was because on Friday she missed all her medication.   Kaycee is very diuretic dependant and blew up with fluid overload when she missed these.   

Because it was a Saturday she didn’t get transferred back until Monday.   She was stable enough by then although still in a mask.    The ambulance came late evening for Kaycee, so again Kaycee’s diuretics were missed again, causing her to require more oxygen via the mask. 

Back in Manchester.

We arrived late evening back to the ward.    Within a matter of a few hours we knew Kaycee wasn’t right and that she would need support at some point.   We explained to the doctors that she had missed at least 6 doses of her diuretics over the course of the weekend.  The doctors decided to give her some extra to see if this would bring her oxygen down.   She also ordered another x-ray.  Whilst we waited for all this to be done the doctor took bloods to check for infection due to having anaesthetic one of the side effects can cause chest infections.    X-ray was done and the results just confirmed that Kaycee was fluid overload.   Kaycee was transferred back down to High Dependency to put her on the Bipap as she needed extra support until she wasn’t as puffy.    

A few days passed and Kaycee started to get back to normal.   The Cardiologist and Respiratory team yet again started to argue about the causes of this.   Cardiology again agreed that the Cath results weren’t as clear as they wanted them and that some of the things weren’t done what Manchester had asked for.   So they told us they were going to get back in touch with Birmingham for a second opinion.   At this point we were getting cross because we were at the same point as we were before the weekend … No answers.

Cardiology came back and told us that Birmingham wasn’t happy to intervene at this point but for Manchester to get in touch with Great Ormond Street. 

Due to Kaycee being unlucky and having the life threatening Pulmonary Hypertension an ASD and Chronic Lungs Disease there is a Pulmonary Hypertension Clinic so he would assess Kaycee properly and decide from there what treatment she would need for the pulmonary hypertension or whether the ASD need to be shut with a device to decrease the size of the hole.  This referral would take a while to sort so again waiting again. 

Kaycee was down in HDU for a week and then went back to the ward to wait for her next op – ENT.

To op or not to op?

February finally came and Kaycee was due her ENT op, what we had waited two months for.    She was having a camera down to check all her airways and make sure there was no obstruction to her airways and also to check the bottom of her lungs for infection.   She was going down Friday afternoon so she had to be starved all day.   The Consultant came up and asked questions about Kaycee her health, background etc.  They assessed her and then said they will be back in a while to take her down.    A few hours passed and Kaycee hadn’t gone down so we asked the nurses to chase up. 

The nurse came back and said she is down last on the list.   She thought this was because she was complex due to her history so they were doing the kids first which were easier to assess.    The consultant came up at 6pm, we thought great here we go.    No how wrong were we.    He told us because of bed space in PICU or HDU Kaycee wouldn’t be going for the op today.   We couldn’t believe it.  Not only had Kaycee been hungry all day long and starved but we had mentally prepared ourselves for the wait whilst Kaycee was under.    

He told us that his list for Monday looked more promising and that he wouldn’t ensure that a bed was free for Kaycee.    This didn’t make it ok we were so angry with them.   We couldn’t see why this wasn’t established earlier to avoid all this stress and anger.  

Monday came and an ENT consultant came up and explained that they were no room on the Monday list but another consultant was doing an evening list starting after 6pm and that she would be on that.    Again Kaycee was starved from 2pm.   We waited and then the Consultant came back about 6:30pm.   Assessed her and said he will be calling her down shortly.    7:30pm came and Kaycee went down.    It was only a short op and she was out for 8:40pm.    So we met her in recovery.   

At first they had a PICU doctor there to assess Kaycee and she was going to PICU, then she was going HDU.   An hour passed and they decided that she was going to the ward.    The problem here was she had two different beds booked on a ward and both had been given away and because she was an isolation patient she needed a cubicle and cubicles in hospitals are very hard to find as most of them are used by long term patients.    Four hours passed and Kaycee wasn’t looking the best.   PICU was called and a doctor came and assessed Kaycee.   She was breathing harder than she was earlier.   The decided to send her PICU for a few hours in case she needed to go back on the vent.    So PICU (3^rd Admission) it was.   

As it happens before she got to PICU she started to sort herself out again, but because the bed was booked it was decided that she would go anyway and it was more for observation more than anything.    Kaycee got discharged from there back to a ward within about 4 hours of her being there.  

Prep for gradual discharge.

After a bad experience on another ward and a quick complaint we got moved to the original ward that Kaycee was from and where everyone knew her and us.  So much easier when the nursing staff know Kaycee well and us.

Kaycee was looking great and she had the occasional extra dose of diuretics to keep the extra fluid off.    We was just waiting for a response from G.O.S.H and also gastro for her tummy feed peg to be sorted.  

When the doctor came we discussed if Kaycee was allowed out and about.   It was agreed that she could come out in the pram around the hospital and gradually we could increase this time and start taking her out of the hospital grounds for a few hours.  

A few days passed and Kaycee was loving coming to the canteen with her mummy & daddy, she just loved being out of her bed and being out and about.  It was great.   Doctors came round and were really pleased with Kaycee.   They asked us if we fancied going home for a few hours or taking her to the park etc.   Of course with everything that we had done we jumped at the chance.   The initially agreed that Saturday started it, but with her being so well and with it being only Wednesday they decided it would be silly not to let her go the next day.   OMG I couldn’t believe it, I could take my girl home.   Albeit it was only for a few hours a day, because Kaycee’s feeds weren’t sorted but it was almost like it was a safety net for us in case she wasn’t 100% when we took her home, the extra comfort knowing that we didn’t have to go through A&E just straight to her bed and call a doctor. 

The best long weekend of my life!!

Thursday morning couldn’t come quick enough.   I have never felt 100% confident about taking Kaycee home so I knew this was a good sign that everything would be amazing.  

We got all her drugs, feeds etc ready.  Community team were rung to inform them that Kaycee would be in the community Thursday to Sunday.   We packed up and off we went.    Putting Kaycee in the car for the first time in ages was brilliant.  Her face lit up, she was sat there all excited kicking her feet and looked brilliant.   We drove home entertaining her all the way.  She normally goes to sleep in the car but think all the excitement was just keeping her awake.

We got home, TV on feet up – HEAVEN!!   We did nothing all day, well all weekend really.  We had a proper tea and just chilled out.   It just felt amazing.   That evening we decided earlier in the day that we would nip to Michael’s parents before coming back to the hospital.   They didn’t know that we were home so that was a lovely surprise for his parents.   Driving back was rubbish because I actually didn’t want to go back but I knew it was for the best. 

We went home Thursday through to Sunday.   Everyone came round to see Kaycee (well family, as we were still cautious of the fact that she had only come home on day leave and to not increase the risk of infection to her)   It was lovely seeing the family though and having a bit of a “normal life”.    Everything was perfect.  

Driving back Saturday night, Kaycee was hysterical in the car from getting off the motorway at Manchester.  This was unusual for her to cry as she doesn’t cry?   I put it down to traffic (as we were stuck in football traffic and she hates it when I stop at red lights) and teething as I knew that she had her top molars cutting.   So I decided to stop at the Tesco down the road and take her in there to let the football traffic die down.   

This was a massive step for me as I had never taken Kaycee anywhere public due to her compromised chest.   I put her in the trolley and she LOVED it.   Her face was priceless.   We played in Tesco up & down the aisles and she just swung her legs in excitement and giggled.   She just melted my heart being so happy considering how upset she was in the car.    We spent about an hour in there to the point where a security guard asked me what I was actually doing.  Ha was pretty funny. 

We got back to the hospital that evening and normal routine got her bathed, bed etc.   During the night her oxygen requirements went up.   Again due to her teething I didn’t think anything into it.  I told her doctor in the morning and she was happy for her to still go home for the day as Kaycee was laughing and smiling in her pram.   So this reassured me that everything was ok. So off we went home again for the day.