Epilepsy and Chest Infections

What a week. It seems lately that every week or so there is always something dramatic going on or something rubbish happening. I’ve been working hard on remembering to take my meds, and to keep plodding on and be more upbeat. But when life starts throwing threatening illnesses and diagnoses at my child, cars breaking down, and whatever else has happened lately it really starts to get you down.

At the weekend we tried to go to a BBQ we had been invited to. I was really excited to go and there was a paddling pool and bouncy castle there too. But I knew Amy wasn’t 100%. I wasn’t sure what sort of illness she was brewing but I did notice in the morning that there was a mild tracheal tug going on. I put it down to hayfever and a cold as her eyes and nose had been so runny. So I medicated her up and decided we would go anyway and if she wasn’t up to it we wouldn’t stay long.

We had been there less than an hour and she was looking awful. We put her in my friend’s daughter’s bed to let her rest, put some videos on for her and watched her. My friend’s child has loads going on medically so we checked her sats and obvs (temp, resps, oxygen levels etc). Her heart rate was really fast and her temp was very high. So we rang the hospital and asked to have her assessed.

Once we got there I was adamant that what we were seeing was a chest infection. I told the doctor she didn’t need an xray as he could hear that she had a strong crackle on one side of her chest. We all agreed oral antibiotics be prescribed and then us all go home.

The nurse came in to do a final set of observations before sending us home. The sats showed as 82. We were so shocked. Sats are usually 99/100%, anything below 92 is cause for concern and usually a person is put on oxygen. The doctor literally ripped up the discharge letter and got us admitted to an open ward.

Amy was put on oxygen but this wasn’t bringing her levels up enough. A salbutamol nebuliser was given, blood gases tested, a canula inserted for antibiotics and fluids (took 4 goes poor thing) and optiflow oxygen started (wet/humified oxygen). It was so alarming. I haven’t seen her fight for her life like that in a very long time. We are used to fairly regular chest infections but nothing like this.

Eventually she stablised and she was left on the optiflow and maintaining decent sats levels. Our pediatrician happened to be working that night and came in to see us.

“Amy’s results are back from her EEG” she said. I felt a bit sick. I have been waiting for these results for a few weeks. We know she had that one big seizure, and I know that for a few months I’ve been constantly saying how amy is different and doing “strange” things. But I really thought the EEG wouldn’t have picked anything up and that either she wasn’t having seizures, or maybe she needed a 24 hour EEG.

“The EEG showed that she is having A LOT of unwanted electrical activity”. So in addition to her rescue meds she now also has sodium valporate twice a day. Her trihexiphenidyl was also swapped for levadopa. It was devastating. Seizures were the one thing we thought she had escaped on this whole cerebral palsy journey.

Day by day she is getting better and we only stayed in a couple of nights. She’s still on antibiotics but just through her tube and not an IV.

It’s all been really tough. She’s not been at school this week… she was only in one day last week too because of her GJ change at the city hospital.

I really really hope that as the meds get increased week by week we start to see our old Amy again. I miss the smiles. She can be happy.. but not like before. Something is stopping her. Obviously I am worried also about her getting bad side effects from meds. The picture I put up there is her 8am meds from this morning. I can’t believe how many syringes of meds she has each day. I am on a bit of a downer about it all and still processing it and aside from that there is a lot of other stuff going on in our lives… I just hope soon things settle and we can start to build nice memories again and be happier. I know Phil is struggling too. Just want everyone happy and well.

I have so much more to ramble on about, but I need to get myself ready to pick her up from respite. Haven’t really stopped today, been playing catch up. Should have a nice weekend though, got lots of nice family stuff planned.

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At Least the Blossom Trees Look Pretty

Hey everybody. I am really not doing well today.

I guess it has been a rough few months really. I just emailed Amym’s (my daughter’s) pediatrician to see if we can bring her appointment forward.

Recently she has got into a lot of self injurious behaviour. I have literally no idea why. It could be epilepsy, could be sensory, could be behavioural, could be frustration/communication issues. In the last hour she has caused her chin and neck to bleed in spite of my best efforts to keep her safe. School and respite put socks on her hands and make sure she can’t do too much damage and I’ve been making a more concentrated effort to keep her nails trim and smooth.

Her athetosis has been absolutely wild. If I lay her on the floor she pretty much thrashes and bounces with such momentum that she goes flying onto the hard wood floor or flips onto her tummy and gets stuck. She can kick her legs so hard that her whole body twists round and she can smack her feet onto the floor or radiator. The room is as padded as can be, and we have a new high sided bed on order. But I feel like lately instead of raising a happy little girl and helping her with physio and speech and language… I’m just safe guarding her constantly and trying to prevent meltdowns. I don’t know what I am doing wrong or what I could be doing differently.

Since the seizure this has all started and I am not sure if there is a connection. I am still waiting for EEG results and have left some messages/sent some emails to chase them up. Though I half suspect they’ll come back fine and we’ll need to do a longer EEG.

We are also waiting for a different hospital to give us a second opinion on long term feeding options. Right now she is 24 hour GJ fed. (Trans gastric jejunostomy). Yesterday she had a routine GJ change but the first lot of sedation failed and she had to have a second course which unfortunately was a rectal one (called formaldehyde). Sadly this was too much and she wouldn’t wake up for 5 hours. The day case ward started to close around us and they allocated us a bed on the short stay unit. Eventually we managed to rouse her enough that they would let us home.

These routine changes happen a few times a year. The risk of sedation and the missing of school are a quality of life/safety concern for us and we know that this can’t go on. Surgeons recommend EGD surgery (total oesohphogastric dissociation) which is basically separating the oesophagus from the stomach and re-routing it to the jejunum (intestine/bowel).  It is major, major surgery, and one that I don’t feel she is a suitable candidate for. I feel a separate jejunostomy would be more appropriate but obviously I have no medical background so it’s just a hunch. So we are going to hopefully seek a different outcome from elsewhere. I totally respect what the first hospital have advised, and I get that they deal with motility/gastric issues way more than I ever could… but at the same time I am a mum putting my daughter’s life in someone else’s hands. No decisions like this are made lightly and her comfort and quality of life will always be at the forefront of my mind.

On top of this there’s a few other issues going on, I know it’s tmi but I had cystitis last week and generally felt grim. This week I thought would be a bit better but the whole GJ thing and keeping Amy safe has been a tough pill to swallow. I did a self help referral recently and I have a phone interview next week for it. It’s a 45 minute one and I have a questionnaire to do first. I’m nervous, but I figured my anxiety clearly isn’t going away with medication alone and maybe there is something else I can do to try and get better.

Yesterday as we walked through the hospital two nurses came past with a small incubator. They were heading to the NICU (newborn intensive care) where Amy was transferred when born. The child was fully ventilated with every tube and wire going. Loads of monitors. CPAP hat. The works. It hit me out of nowhere. I nearly fell to the ground. My legs went like jelly, my chin wobbled, and I immediately cried. I forget sometimes what we came through and how hospital life will always have these random triggers for me. My mum was with me and I was so glad. I think it hit her pretty bad too but she managed to stay composed for me and be the rock that I very much needed all day yesterday.

I am hoping to see my dad in the next few days… his work shifts are such that we sometimes get a nice dog walk in whilst Amy is at respite. Seeing my parents is so important to me and a real highlight every week. Also Phil is now off on sundays and I am hugely pleased about this. We might be going to a BBQ on sunday so that’ll be cool.

In the time since my last post we have had lots of nice days out and actually lots of positive times and nice memory making. I know I come here and can be really negative, but I do have good days and there is still so much to be happy about and grateful for. It’s just one big mental battle sometimes.

Anyway. I guess that’s it really. Just wanted a little vent at everyone. Time now to get on with making tea and getting Amy to go to sleep. She’s had her meds but is presently somehow calm in her bedroom with music on. I am enjoying it whilst it lasts!

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The Day my Life Changed Forever

So this the birth of my daughter is the most dramatic, amazing, heartbreaking, most everything story I have to tell. I suppose everyone’s “birth story” or “becoming a parent” story is the biggest thing that ever happens to everyone. But I want to write down my daughter’s story before writing my posts about how incredibly proud she has made me recently. I have always been proud of her but this last few months have been absolutely astounding. Nothing can prepare you for parenthood, or birth, or anything like this. The world we were plunged into in 2014 truly defines me today, it also accounts for my perspective of the world, my view of the past, my anxiety of the present, and my aspirations and hopes for the future.

I am a mum. I am a “special needs” mum. I am the proudest person in the world. I am an advocate. I will fight EVERY negative view on disability, I will fight to raise awareness, I will fight for inclusion and equality. I will be that annoying person who harps on and on about accessibility to shops and the community in general. I want to see a world where my daughter and every wheelchair user gets the same rights and access to the world that we as “able bodied” people take for granted. Things have got so much better in the world, but we have a long way to go to fight stigma and assumptions. Anyway, I will dismount my pedestal now.. back to the story… ahem.

Me getting pregnant did come as a surprise. I was pretty well adjusted to nights out, playing with lego, playing video games, going to rock gigs etc… I liked my me time and I liked working full time and trying to build a career. My pregnancy was pretty typical… everything went absolutely fine for the whole pregnancy, I was the right weight, I didn’t smoke, I didn’t drink, I did it all by the book… after all.. I was creating a life! I did eat quite unhealthily but I made sure I got my 5 a day and if not that at least lots of vitamins…

Maternity leave began for me at about 36 weeks weeks. Amy was showing no sign of arrival and eventually I had to have a sweep. At 41 weeks and 3 days my water broke. By the way for me it was nothing like what happens in the movies… I wasn’t even sure that was what had happened until I phoned triage to check!! I knew at that moment I was to become a mum in the next 24 hours.

The next day my contractions began. They were indescribably painful. I can’t even begin to imagine the pain I was in. I remember being on all fours in my front room screaming my head off not knowing what to do. Phil rushed home from work to take me to the hospital.

When I got to the hospital they told me I was in the very early stages of labour and that it might be a benefit to me to go home for a while. I said no… I was in too much pain. In retrospect I am so glad I made this decision because if I had it’s pretty certain Amy would not be here with us today.  A thought that fills me with all sorts of pain. She is the Ash to my Pikachu and so on.

I was given some pain killers and was put on gas and air. All it did for me was make me feel nauseous. The nurses/midwives came in and checked on me every few minutes to check her heart beat. All was fine. They were about to tell me I could get in the birth pool if I want. I didn’t really have a birth plan as I had been forewarned by so many that no matter what you plan… fate or your baby will have other plans. So I thought I would just go with the flow.

After a few hours of being in the hospital the nurse came to do a routine heartrate check.. her face dropped.. she left the room quickly. The senior midwife ran in and urged me to get on the bed and lay on my side. I was so panicked and in so much pain I was shouting that I couldn’t… but obviously I obliged.

Next thing I know I was rapidly being transported down hospital corridors in a bed surrounded by surgeons, doctors, midwives, nurses.. I don’t even know. I just remember screaming “please, make my baby safe”. I was in a deep panic and hyperventilating. The surgeon was explaining that I was about to have a category A c-section. I screamed for them to put me to sleep faster. I remember the mask going on and slowly feeling calmer and dozier. I was asleep.

When I awoke I could hear my name being repeated over and over. The morphine has distorted my reality and my first words were “I’m a robot now.” Something I look back on with both a combination of amusement and heartache.

When I was taken to my room I wasn’t aware of all the tubes attached to me, of my smaller stomach, or the fact my baby wasn’t there. In my drugged up state I felt like they were just preparing her to come and see me. Time didn’t pass slowly at all. My mum, dad, mum in law and Phil were there. I chatted all sorts of rubbish not understanding the severity of the situation whilst everyone around me was worried sick.

Eventually they brought Amy in. The situation hit me at last. “She’s very very poorly” said the midwife. “I’m so so sorry. This… just doesn’t happen”. Everyone was in a state of shock. I later learned that the entire staff involved in Amy’s birth endured a long debriefing as it was a distressing and traumatic time for all involved… after all, it was totally unexpected, totally unpreventable.

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Amy was transported immediately to the city hospital for cooling therapy. She had been resusitated for 8 minutes following the csection and suffered a severe brain injury (one that would come to be know as “hypoxic ischemic encephalopathy – grade 3). The cooling therapy would keep her at 33 degrees to help prevent the brain damage spreading further. The next day I woke up and had a panic attack because she was in a different hospital to me. The adrenaline kicked in and I was shouting and rushing round packing my bags. I forgot I had just encountered major abdominal surgery.

An ambulance took us to the hospital. A doctor met with us. “Is there any hope?” I asked… still drugged up and totally unsure of what was happening. The doctor provided a grave expression and told us she didn’t expect Amy to make it through the night, and if she did she would be a “total vegetable” (A term I have come to detest and advocate against very strongly).

The next 5 days were spent in absolute agony both physically and mentally. With each day we saw progress with our little girl as she lay motionless attached to what seemed like hundreds of machines in the newborn intensive care unit. Compared to the other babies she seemed giant… she was the only baby in our section who wasn’t premature. It didn’t seem right that she was here. I remember breaking down so many times “why us?” “why her?” “will she ever come home?”

I remember the time a nurse told us she had done a wee. This was a huge win. Something you wouldn’t even think about as being an achievement.. this was huge. After a few days they started to wean her off the oxygen to see how she coped. After a few days she was off oxygen and breathing for herself. I well up just thinking about it. A nurse said to me “just think how good it will be when you finally take her home.” At the time this felt like a sick joke.. I had been led to believe that she was never coming home. I thought that eventually they would want to switch the ventilator off or that her heart would give in.

She was having constant seizures and we could see on a monitor every time she was having them. It was heartache like you could never imagine, I cannot quite convey just how incredibly hard those days were for us and how we all got through it amazes me. She fought, we fought, and so did the hospital staff.

She needed constant suction (she had no swallow reflex) and already had pnemonia from aspiration of meconium) and was fed via an ng tube in her nose. I was expressing breast milk every few hours to help give her the best chance. I continued to do this for 6 agonising weeks. I have a huge respect to anyone who manages to breastfeed… pumps hurt a lot more than oral breast feeding.. by the end of it I was in so much pain from mastitis and bleeding. 100% worth it. The csection scar hurt more and more as the painkillers wore off. I had a daily injection to prevent clots and wore anti DVT socks too. The scar was covered with a huge bandage. Just getting up to walk to the bathroom took around 30 minutes. At the time the pain was a sore reminder of what she was going through.

There was a day both Phil and I totally broke down. It was because I spent all morning trying to build myself up to say out loud “why doesn’t she move?”. Later that day a nurse said to me “There are good days and bad days. Today I think you had a bad day… but there is always tomorrow.” Those words will stick with me forever. The other thing that will stick with me forever is my respect for nurses and doctors who work tirelessly in highly stressful environments not only keeping people alive, but also helping encourage people who are experiencing a huge shock to the system. They don’t ever stop these nurses… they are filling charts, checking on patients, performing procedures, washing hands, getting meds… endless tasks. I bet when they get home at the end of the day they ache SO much. I hope they also ache with pride at how incredibly amazing they are and know what a difference they have made to the world that day. Seriously. The most inspiring time of my life. I have so many quotes from nurses, “there is always hope” being one of them. Thank you st marys from the bottom of my heart.

When the cooling cot was warmed up to normal temperature we saw her finger twitch for the first time. How we cried. Our little girl was with us. She could move! We filmed that little finger for such a long time. I am now crying just thinking about it. The first time we held her was on day 4… she was still fully ventilated and it took the nurse 45 minutes to get her safely out of the cot and into our arms.

After a few weeks she got transferred back to our local hospital to the neonatal ward. When she was about 4 weeks old she made her first sound – a cry. We were amazed. When we had met her pediatrician for the first time she asked me what concerns I had… one of my main ones was “how can she tell us if she is in pain?”… well, the cry eventually came and she showed her first signs of communication. We were amazed. I remember telling the doctor that ALL I wanted was for her to be happy and have an excellent quality of life… and this is still true as ever. Fortunately she IS happy and DOES have an excellent quality of life.

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At 5 or 6 weeks old she was okay to come home. We were so happy and so scared!! We were armed with tube feeding supplies, medications, and a suction machine.

So that’s sort of it. The shortest version I could write. There is so so so much more to the story than this but I wanted to get this out there for people following this blog who don’t know me or my story. I will come back to bits of this story in future entries as so many things happened that shape how I think of the world today and how I operate in this entirely new world.

Amy is now over 2. She has severe quadriplegic cerebral palsy… she has mixed cp meaning her muscle tone fluctuates… sometimes she is very stiff, sometimes a bit floppy… she has constant dystonic (uncontrolled/involuntary) movements and literally does not stop moving unless sleeping. She is still 100% tube fed but via a gastrostomy button (on her tummy) and is fed 24 hours a day on a medicated formula via a feeding pump. I will no doubt discuss that surgery on here, and also the many feeding issues we still encounter to this day.

She has progressed so much. In spite of her restrictions her body forces on her… she is an incredibly bright little girl. Cheesy as it sounds she surprises us everyday with her tenacity and feistyness. Everyone who meets her adores her. She really is the best thing ever to happen to me.

I do still suffer PSTD from those dark days.. I do still get flashbacks. But i am getting better. I once collapsed at the sight of a surgeon a year or so ago because it gave me an unpleasant flashback. I am getting better at these things. Now I can focus on where we are now and whilst we do have a lot of challenges and hard times… we can smile.

I hope everyone can appreciate that this was a particularly difficult post for me to write. I know it wasn’t well worded or anything, I just typed and typed and told it exactly how it was. It has been hard reliving it in this amount of detail as usually when people enquire about Amy’s story I only tell a short version, kind of a default response I have made. This post made me relive every room, every conversation, every thought, just everything.

A huge thank you to my amazing boyfriend Phil, my parents, my mum in law, my grandma, all of my family and friends, st marys hospital, stepping hill hospital.. and the therapists who continue to believe in and work with amy and I today. Most importantly thank you Amy for pulling through and for continuing to make my life a happy one.

For anyone interested in keeping up to date with amy and her antics.. search “amy rose’s army” on facebook.

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