So, as is pretty standard for us - despite how often I want to update more - it's been a full year since the last update. I'm sure everyone was hit very hard with the pandemic, and although it wasn't as hard on us as it was for most people (we'd already been living like hermits due to all of Alyssa's surgeries and complications), there were still several factors which affected us. Particularly with regards to her recovery and rehabilitation from her R hip removal.
When Covid-19 really took off here in March, everything shut down, as with the majority of the world. This unfortunately meant that only emergency clinic appointments could go ahead, and swimming pools were completely closed. Frustrating for us with the timing of Alyssa's hip removal and her much-needed hydrotherapy but completely understandable, given the circumstances. It just seemed so unfair that - after an 8 month battle to save her hip, with body casts, long periods of immobilisation and isolation, and multiple hospital admissions - she didn't even get a chance to rehabilitate once her surgical scar healed. She literally got that one hydrotherapy session where she walked without having a hip and then the world fell apart. For everyone this time though; not just for us, which is generally the norm. She was able to manage some crawling in the house, though it was difficult for her after such a long time being immobilised, and she was one-sided because of the swelling on the R side, but she gave it a good try. Unfortunately, she'd end up with good periods and bad periods, with the bad periods meaning she spent a great deal of time back in her bed. The effort of even trying to crawl caused fatigue, and without having the pool to take her weight, it really knocked her energy levels. She was still having issue with her leg swelling and being 'painful' (we believe the swelling causes pressure, which gives her whatever her version of pain is) so that would cause her to stay in bed, but being in bed just made it more difficult for her to crawl once she felt better again. In short, a neverending vicious cycle of events.
Around July - just as everyone here who had been shielding from Covid was told they could start going out again, we discovered that Alyssa's immune system was not functioning properly, and looking back at previous blood results, had been affected since March. Her white blood cell count (wbc) was abnormally low and we realised that she would be unable to fight infections even as well as she had previously, which was always slower than everyone else. Lots of testing began, whilst keeping her as shielded as possible, as nobody wanted patients at hospital unless it was absolutely vital. I also did not want her to be near any hospitals unless absolutely vital, especially once it became clear that she could not fight infections like she should. Regardless of Covid, she has always been prone to cellulitis and required days of IV antibiotics to get rid of it (despite all of 2017-2020 admissions for the multiple leg issues, her main reason for admissions has been the recurring cellulitis episodes), so I didn't want her exposed to any more than she needed to be. But obviously we also needed to investigate why her wbc's were so low, in order to try to correct it and hopefully prevent the need for shielding. It turned out to be a long process (and we still don't actually have answers yet, the investigations are still ongoing due to aspects I'll cover here further on) but she was referred to haematology at Glasgow Sick Kids so that they could do more specialised testing. In August, she had an ingrown toenail on her R foot, which didn't hurt her (obviously) but annoyed her ... so she basically just attacked it. The joys of not feeling pain. With having very little white blood cells, it became infected almost immediately and I had to have her admitted to the ward for IV antibiotics. They were shocked by how quickly it had turned to cellulitis, even knowing her so well, and her history of it. We stayed for around 5 days while the IV antibiotics did their job - with multiple cannula attempts due to the scarring in her poor veins, and her inability too look after cannulas once in her arms etc because she doesn't feel them when they're in. We got 2 weeks of oral antibiotics and we were once again home. For a little while. In October, she had a thumbnail which was annoying her, and .... you guessed it, she just pulled it off. Very quickly, it too was badly infected and the infection was spreading so I had to have her admitted again. Pretty much the same process as with the toe ensued. Both the doctors and I (and our families) had tried to explain to her that it was even more vital than ever that she not pick open wounds or cause new wounds because her body couldn't fight infections any longer, but if something doesn't hurt you then it's difficult to understand. She'd simply get a sensation she didn't like and do whatever was required in order to stop it, then be happy once whatever was annoying her was no longer there. Very frustrating for us, but undoubtedly for her too.
By November, her wbc's were still very low and we saw the haematologist for the first time. He said that there were basically only two reasons for them to be so low: either her bone marrow wasn't producing them any longer, or it was, and something was "eating them up" (ie her body was attacking itself with an autoimmune disease or one/some of her medications were destroying them). He told me that if she got a fever at all, or required a hospitalisation for any reason, he was to be contacted immediately as his protocol for antibiotics would be different to the standard one for something without low wbc's. He booked her in to have bloods taken for a whole host of tests, including autoimmune antibody ones. He said that the autoimmunity blood results would take a while but needed to arrive at the lab on a specific day so that they could be tested and the sample not be ruined. She was booked in a couple of weeks later to have those bloods taken and he said he'd call with the regular ones once they were ready, and he expected the autoimmunity results around January. He then noticed that she was a bit anaemic so he decided to correct that even though it was minimal, to give her body the best function possible, while we tried to figure out the cause of her low wbc's. Eventually we discovered that the blood sample did not reach the lab in time for the deadline and the sample could not be tested (it was taken again last month and we are once again waiting for results of it). We mostly plodded along in January with trying to have her at school safely, and not overtire her, so a plan was made that she would only attend one specific area of school and she would do all lessons from there. Minimal staff and students would be allowed in, and only those absolutely necessary would be allowed in her personal space. She was upset that she wasn't able to see her friends even once she went back to school but we explained that it was to keep her as safe as possible, and we couldn't risk her catching Covid, especially with her immune issues. I in particular didn't think she would fight it very well, even though some of her doctors were still saying that they really weren't seeing kids with many issues from it. I've done this for 14 years now however, and I know how her body responds to things better than anyone - including Alyssa herself. She was already showing signs that she was potentially fighting a chest infection, so I was monitoring for that already. I didn't need her near any bugs, particularly one which might affect her lungs.
Just as we were about to leave January behind, I got a phone call from Test & Trace to say that one of Alyssa's carers had tested positive for Covid. There was obviously nothing I could do about it at that point - it had already happened - so I just prepared to watch for symptoms. By the next day, I knew Alyssa was ill, and the headaches I'd been having since the night before were becoming more and more severe so I was pretty sure that I/we had it. I really didn't want to have to take her to hospital without knowing one way or another, and I could tell very quickly that an admission was coming. Her oxygen levels were starting to dip but not worryingly at that point so I arranged for home tests and we both did them on the 1st Feb but before we could even get results, she spiked a fever and I had to have her admitted to the children's ward, as per the haematologist's instructions. I warned them immediately that there was a good chance it was Covid; that only the minimum number of staff should come near us, and we were admitted to an isolation unit within the ward where Alyssa was tested again. They could see that she was having difficulty breathing so she was put on oxygen and then x-rayed in the unit via a mobile x-ray machine, where they could see a consolidation in one of her lungs. It was presumed at that time to be a chest infection but once the Covid results came back as positive, the doctors decided that it was more likely to be a result of that and not actually a separate bacterial infection. She was put on IV antibiotics anyway as per the haematologist's recommendations, and had several blood tests done to make sure nothing else was going on at the same time. She was given steroids to help her lungs and she made a dramatic improvement within a couple of hours of the steroids being administered. Her paediatrician was delighted at how quickly she responded and, after making sure her oxygen levels stayed up for 24 hours after she was taken off the oxygen, she was allowed to go home. Sadly, although the steroids had caused her to improve, they had actually just masked the fact that her lungs weren't able to cope and within 24 hours, her oxygen levels were seriously low. I had to take her back up again, where she was put on a higher level of oxygen, started back on IV antibiotics and steroids, and x-rayed again. This time, the x-rays showed that both lungs were badly affected (it had only been a matter of days since the first x-rays!) and she was struggling to breathe.
This escalated very quickly the following day and by teatime, the paediatricians were seriously concerned and contacted both ICU there, and also the Sick Kids hospitals, because they didn't know what else to do for her. She had to be placed on a high-flow oxygen machine from ICU because her lungs weren't getting enough oxygen even with the amount of oxygen she was getting from the nasal cannula, and it didn't go up any higher. The high-flow O2 machine, as it sounds, pumps oxygen into the body at a really high rate ... but it also then pumps any infection back out into the room, so the staff couldn't even turn it on without having to go back out and come back in with full personal protective equipment (PPE) on: special filtration masks, visors, full-length gowns, and gloves covering the ends of the sleeves so no Covid particles could get inside their clothing. It was very surreal seeing everyone in the level of protection gear you only really see in virus disaster movies, but it was also very understandable in the circumstances. They switched on the machine and Alyssa was immediately upset because it was really overwhelming having so much oxygen fired at her, but she gradually adjusted to it, and the paediatricians began to discuss what the options were for her. After going away for perhaps half an hour, they returned with members of the ICU team and a more detailed discussion took place. The paediatricians said that they were worried that they could not provide Alyssa with the care she needed (they usually stabilise children with any serious condition and then those children are taken by ambulance to one of the Sick Kids' hospitals for more specialised care). They had been in touch with both Sick Kids' hospitals and both were also wary of taking her because they felt they did not have much experience with Covid either, because they'd seen so little of it in children referred to them. They felt that the adult ICU team where we were would have more experience, because they'd dealt with so much of it since the start of the pandemic. The adult ICU team were concerned that Alyssa would not cope in ICU, especially as it would require her to stay by herself (she started getting distressed just at the thought of that) and that although she was technically over the weight limit of someone in their care, the equipment they had would most likely be too big for her. A long discussion took place because in order to even send her to the Sick Kids' hospitals, they would have to sedate and intubate her as she could not be taken off the high-flow O2 machine, but it was too dangerous for everyone around her - including paramedics in an ambulance - to be near her whilst she was breathing the air out (and even that equipment was too big for her, and kept popping out of her nose). Eventually it was decided that if she stabilised over the next 2 hours on the highest level of oxygen output, she would stay where she was, the ICU team were right downstairs and would be in charge of the machine and oxygen levels, the Sick Kids' hospital would be in charge of her treatment, and the paediatricians would ensure that she got whatever they needed her to get. They were also worried that she had blood clots in her lungs and that she wasn't able to breath because of those, but they couldn't send her to CT because they couldn't take her off the machine - and she couldn't go whilst attached to it. Fortunately, she began to stabilise, and she was calmer with the 'staying where she was' plan as well because she knows everyone there. It's a bit of a second home to her, the staff are amazing, and it was definitely better for everyone if she was calm, so that she would breathe as normally as she could. The decision was also made to just start her on blood thinners, just in case there were blood clots forming, which is a common complication with Covid-19. As usual, access to her veins became an issue, and they couldn't get the IV drugs into her. She ended up requiring a Central Line fitted, and she just lay there and tolerated it being put in, with her only comments being "He's pulling on my neck" once the anaesthetis was stitching it in place. She didn't care about having it inserted, nor the fact that he was literally forcing the needle through her skin repeatedly ... just that he was pulling on her (that was him pulling the thread through her skin!).
I was suffering severe headaches throughout this because I had Covid too, but I was nowhere near as ill as she was. The sight of your child attached to a machine; literally the only thing keeping her breathing, is just something else entirely. I don't think you can actually put into words what it feels like at the time; you just go with it, and hope that you get a good outcome. I'm not sure I can put it into words even now. I received a flood of messages; asking how she was, asking me to tell her they were thinking of her, and it was lovely to see so many people sending her love and well wishes but it was also really difficult to reply to them - whilst in the middle of it all. I generally use Facebook to update people because it's the source I have most people on, and one post can pretty much let everyone know all at once. Close family members were obviously being updated as soon as I could possibly manage, but there was so much going on at any time, the plan was changing constantly, and having such severe headaches meant I struggled to even look at my phone/ipad at times. I know that it was very frustrating for everyone to not have as many updates as I usually post but I physically couldn't manage any more than I did; I was exhausted and trying to process what was happening. I posted some pictures of her whilst she was attached to the machine because a lot of people didn't really understand what was going on, nor how ill someone could actually be with Covid. People are so used to her being in hospital and always looking happy, regardless of the reason, so it was a real shock for them to see her so poorly. She's so used to hospital life that it doesn't normally affect her much now (she actually quite likes it in hospital because she's spoiled by the nurses and play staff!) but this admission was definitely abnormal, and a major adjustment for her. But, as she does, she accepted it, and adapted to the treatment, even though she hated it ... and kept removing the oxygen at any given time! I asked her if she understood what it was doing for her and she said "Giving me air." ..... so I can't say she just didn't appreciate the severity. It was a reminder that despite being 13 at the time, she was still very much a child. 'I don't like it so I shall remove it, even though I know I can't breathe properly without it' pretty much sums that up. She kept saying that she hoped that she'd be home for her birthday (which was towards the end of Feb) and I had to just keep saying that it wouldn't be the first birthday she'd spent in hospital, and we weren't going home too early again. I wanted to make sure she didn't suddenly deteriorate like she did the first time we went home! She was attached to the machine for around 10 days before they started gradually reducing the amount of oxygen she was receiving, and eventually transferred back to the regular nasal cannula that she'd started off on, two weeks before. She was monitored for another few days, and then taken off the oxygen completely, and we came home again after she had gone 24 hours without oxygen. We were pleased to be home, and the cats and dog were pleased to see us!
We were home for about 3 days when she decided that a cannula site at her ankle was annoying her (the cannula had blown mid-infusion when she was receiving antibiotics, and a small lump was still there). I reminded her that it would go away, just as the previous ones had. She could not accept this, or couldn't wait for it to go away on it's on, or both; so she decided to gouge the lump out. She literally dug a hole into her own ankle with her fingers overnight one night, and then announced to me that it was "wet." She had been on the blood thinners right up until discharge so by the time I saw it, there was just a black hole 3cm x 4cm in her ankle, approximately 1cm deep! I had to get oral antibiotics immediately - in an attempt to keep her out of hospital for her birthday and because I knew the paediatricians wouldn't be able to get a cannula into her at that point anyway. They'd already had to have a Central Line put in, in order to give her the treatment for the Covid! The GP gave me orals for her, we managed to ride out her birthday with the orals keeping the infection contained, and then I had to have her admitted once it began spreading again. We spent another 5 days in hospital, after only being home for almost a week, and she was put on IV antibiotics again. Fast forward to now, 3 months and many dressing changes later (3x a week), a biopsy to make sure there was nothing nasty there as well, and it is almost fully healed! The level of destruction that girl can cause is just unreal.
With that in mind, and because that issue is now almost resolved, she threw another eye injury at me this week! There is always something going on with that child! She told me she had something in her eye ... after 10 mins of rubbing at it, and I removed something tiny from her eye, which was already very red and inflamed. I put more of her eye ointment in it, and told her to close it and leave it alone so that no further damage could be done. When I checked it the next morning, it looked okay, so I took her to school and advised them that she had potentially scratched her eye again, and what to watch for. They called me mid-morning to say that she was rubbing at it and complaining that it was "burning." A sure sign of a corneal abrasion in Alyssa. I managed to get an emergency eye care appointment for her that afternoon and just had to put more eye ointment in until I could get there, because I could see she was going to attack it (and we know how much damage she did to it last time!). Fortunately, this time, I caught it early and kept her away from it and there is minor damage. A "small pinhole" is on her cornea, which the consultant was pleased about, but decided that he was going "all out" with treatment, because it was Alyssa! He was the same consultant on the night she practically blinded herself, and we weren't sure if her vision would return in that eye initially, so it was good luck that he was on. We've come away with two different types of antibiotic drops/ointments and he'll see her again next week just to make sure it's healing well. Obviously, if she starts to go at it again, she'll be seen sooner but so far, the ointment is helping and she's left alone.
From an immune system perspective at this time: the Covid ironically helped her once she got over it, thanks to the many teams of doctors/medics involved, because the steroids helped her wbc's to increase very suddenly, and significantly. So she came away with a bit more protection than she'd had for the previous year. Having had Covid, she also had a bit of armour against that for a time too, so her ankle has healed slowly but well, and she hasn't had any more infections since February. Her levels are dropping again now, and her Covid armous is most likely slipping now too, with no vaccine available for under 16's here yet, so she's still shielding. But she is very lucky to be here! And she wouldn't be, without the amazing care of the paediatricians, nurses and ICU team at FVRH, and the haematology and infectious disease specialists at Glasgow Sick Kids' hospital. The paediatricians at FVRH deserve a special mention because they fought for her at every stage, with very little knowledge or experience of Covid at that point (and never having seen any child become sick like she did), but they went out of their way to make sure they found out anything and everything which could possibly help her. They were shocked and horrified to see how ill she was, and they had to learn about Covid and it's many complications at high speed, and without any warning. They truly are a special bunch of people, as are the nurses and play leaders.
If you've managed to read to this point, you're probably one of the people who sent us love and well-wishes during the Covid period (and most likely at every other admission too!) so I'd also like to say a long overdue huge thank you to you as well. The level of love and support Alyssa receives from so many people in so many walks of life is just mindblowing, and very much appreciated. Here's to hoping the rest of 2021 is uneventful for us. It's highly unlikely, but we can hope!
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