Warrior of the week no. 13

IMG_0486Hi I just thought I would share our story with you. It’s been quite a ride and sometimes I forget how much we’ve been through. I can’t remember exact dates on things I hope this doesn’t matter.
So my gorgeous little bambino came into the world on the 29th October 2014 after having such a wonderful pregnancy and what I thought was an ok labour. Alani Rose Burn 8lb 10oz. The only thing that did happen was the cord came away from the placenta but we were both fine and I had this perfect chunky little baby. We had the most perfect first 10 weeks and then I noticed certain things that didn’t quite feel right. She all of a sudden stopped sleeping through the night, screamed night and day but it was a different sort of cry, so high pitched and she seemed in pain. Her eye movements became vacant and glazed some days, she started to get ill a lot and would go floppy on occasions and then very tense in her limbs. We were back and forth to the GP and ended up in hospital a couple of times. I thought I was being a bad mum and wasn’t making my baby happy. Even though she was putting on lots of weight and appeared healthy to everyone else I knew there was something wrong. I was told “that’s what babies do” by many professionals so I just plodded along doing the best I could. Many days I thought I was going insane and felt at breaking point as I had no help being a single mammy.
One of my neighbours came to take us out for lunch back in March 2015 as we’d had a particularly bad night. Unfortunately Alani was only settled for about half an hour while in the restaurant that day and she became more and more agitated and just wouldn’t stop crying, so we had to leave the gorgeous food that had arrived to go home as so many people were trying to have a nice quiet lunch. When we got home I laid Alani down on her changing mat and started singing to her and she just stopped crying immediately. I started to change her nappy, bent down to open the drawer to get a clean one and when I stood back up Alani had stopped breathing. I quickly picked her up with still no response from her, I rubbed her chest with still no response, I ran downstairs holding her, shouting for help, knowing that no one could hear me but I couldn’t remember where my phone was. I managed to find my phone, it felt like ages but it was only seconds, I rang 999 to find the most calming voice on the other end asking me to do all these things to my tiny baby girl. Before I knew it the ambulance drivers burst through my door and started to work on Alani but just at that point she took a breath. My little blue bambino finally was breathing on her own. She then started crying and I was never so relieved to hear the cry, after weeks of wanting her to stop crying I loved that noise. Her sats were all normal after half an hour but they still took us into hospital for observations. When we arrived she was bouncing off the walls she loved all the new faces and even though she hardly ever smiled or laughed she was happy that afternoon in the A&E department. The lovely consultant came and spoke to me to say the blood works looked normal but they would admit us for 24hrs observation after what had happened and my concerns over the past weeks that I had experienced. So off we went to ward 17 at York District for our first overnighter. Up on the ward they told me that Alani could be experiencing “blue syndrome” with what I described but they would monitor. As we settled down for the night I was just closing my eyes and all the machine started beeping I quickly jumped up and Alani had stopped breathing again she was flopping as I picked her up and the ward doctors flew into the room taking her off me trying to get her breathing again. Again she started to breathe and her sats came back up. This was the beginning of our IS journey, that night Alani kept stopping breathing and starting again and towards the early hours of the next day was having spasm seizures…..very aggressive spasms affecting all limbs and rolling to one side and her eyes rolling up the the right. In between spasms she was stopping breathing and also having absent seizures which the doctors had never seen before in a baby. By 9am the next morning Alani was hooked up to an EEG, then she had an MRI scan and a whole host of other tests. My gorgeous baby was becoming a vacant shell in front of my eyes. They started her on various medications to try and control what was happening, but still was uncontrollable and every hour something was happening. At first they thought it was a rare vitamin deficiency so started her on a very awful drug for an adult let alone a baby and I was warned there could be some nasty side affects. Alani reacted very badly to the medication and was vomiting constantly and then kept stopping breathing again. Her seizures were getting more and more aggressive I was so desperate for the test results to come back to find out what was happening or if they had any answers.
They decided to stop the vitamin treatment as she was just so unhappy and poorly. And started giving her keppra which initially slowed down the spasms. Two days later all the results came back and we were told that the EEG results showed IS and my heart sank and I felt like I couldn’t take in what they were telling me. They immediately stopped all other treatment and started Alani on Vigabatrin alongside the Keppra. At this point we had been in hospital for nearly 2 weeks. They did another MRI scan the next day as the first one she had movement so they couldn’t checked everything. Luckily later that day they told me she had no brain damage – finally some good news. Unfortunately even though Alani’s spams were being better controlled she was still experiencing them and she kept stopping breathing. No one could understand what was going on as they had never seen it before. As the weeks went by she became more and more stable with oxygen levels and after increasing the dose of Vigabatrin over the coming weeks while living in hospital her seizures became less frequent. We were all ready to start our taster days at home but coming back to the ward at night time as this is when the IS really affected her during nights. Alani caught chicken pox and we were now stuck in our hospital room for even longer. She unfortunately became very ill with the pox and started having new types of seizures and then got a chest infection.
At this point we had been in hospital for 6weeks. When finally she started to perk up a bit. So they allowed us home during the days while they dropped the keppra and increased the Vigabatrin. We did this for a further 2 weeks and then finally we were free to come home. It’s been a very up and down ride since then and many trips back and forth to the hospital. Alani lost the ability to use her right side normally through the spasm seizures so it took her a long time to build up her strength again. She didn’t walk till she was 23mnths old but bum shuffled everywhere before then. She had continued issues around food and eating which they think stems back to being so poorly during the weaning process from milk to food and having reacted so badly to some medications. She’s has astigmatism in both eyes and is short sighted but you would never really know as she doesn’t let it affect her. She still has days where she is unsteady on her feet but we sing a song about being “drunk” to laugh it off. She recently weaned off Vigabatrin onto Epilim as Alani progressed into having different types of seizures and still has horrendous nights. But her recent EEG showed no spasms or signs of seizures that day and night which was fabulous news so maybe in the near future we will become seizure free and off the drugs completely. I feel incredibly honoured to have a Purple Warrior and so proud of everything she has overcome. She has asthma too and often gets chest infection causing hospital stays and she just takes everything in her stride now. She’s an incredibly stubborn, independent, gorgeous little girl and she’s mine. I still look at her now some days and just can’t believe she’s so perfect as it could have gone so wrong in those early days if it wasn’t for the quick reactions of my local hospital and all the staff. We have still to this day have no answers around what happened, she’s had involvement from Leeds and has been gene tested nothing has ever showed up. I do still find this hard as I like to know answers to why things happened. All I can tell myself is she came out the other side a Warrior. Xxx


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