London’s Journey to repair her Kidney Damage.
26th March 2020 we celebrated our beautiful baby girls first birthday with our close family and friends at our home right before the pandemic hit hard across the country. Feeling so grateful to be healthy and happy and safe together during such a worrying time for the world and oblivious to what was around the corner for our daughter and her health.
Nephrotic Syndrome Minimal Change / FSGS – A term I had not heard of, let alone educated myself on until April 2020.
This is London’s story ..
Tuesday 14th April – London woke at her usual time after sleeping through the night as she normally would, we had no indication that London was sick or feeling unwell as she was her usual bubbly self.
I picked London up from her cot and noticed immediately her eyes looked puffy, I gave her a big cuddle and she seemed happy! My first thought was that she was tired or had been sleeping on her tummy and her face might have been pressed against the pillow.
She didn’t have an appetite and refused her breakfast, she would only take a bottle of milk and I noticed she was extremely thirsty. I sent a photo to my husband and asked his opinion, does she look swollen to you ? Should I be worried ? Am I overreacting ? ……
Looking back at photos of her that morning I think wow, how could I have not thought that was bad ? But that’s hindsight now knowing what was happening to her. That morning, the LAST thing that would of crossed my mind was that she was in organ failure
We went about our morning getting ready for daycare and we agreed we would see if it went down by 9am when it was time to leave it could of been an allergy to something she ate, maybe her formula. We had spent the weekend in our backyard renovating our pool area building a wood retaining wall and it had occurred to us she could have gotten the saw dust in her eyes and had a reaction.
By 9am the swelling was gone, and we took her into her daycare asking them to please call at 11am if they think the swelling around her eyes is returning and to keep a close watch on her today, as we had a feeling something may not be right.
The swelling was reduced for majority of the day, by afternoon it had started to return and it seemed it was returning once she had slept and this was the pattern that followed ongoing.
Wednesday 15th April: 8am (the next morning)
London woke up with swollen eyes again, and her hands and feet were starting to swell. As soon as I picked her up from her cot and seen the swelling I made the decision to take London to the emergency department of the hospital to be seen by a pediatrician, and that this was going to be the fastest way for her to get seen & treated by a trained doctor in children, not just a general practitioner. I had a terrible gut feeling that something was seriously wrong …..
We entered the hospital doors and were immediately screened for COVID19 and when approached the triage nurse looked down at London and looked back up at me and said “Is she swollen ?”
I had not even mentioned a word yet ….
We were taken straight through to see a doctor. My heart was already feeling like it was racing before we arrived to the hospital but by this stage I was starting to seriously worry.
We initially were seen by a medical student doctor who took a full history and did his assessment on London, by this stage her eyes were starting to go down in swelling but her hands and feet were looking extremely thick and swollen and not her usual self. The medical student mentioned a few different things that in his opinion it could be and the reason for her swelling 1. Sinus Infection and/or 2. Allergy
He then suggested we give her an antihistamine to cover both of these basis.
I had done my own research on medications for children under the age of 2 and antihistamine was not one that was safely administered. I questioned his decision in offering antihistamine for a possible sinus infection for a 13 month old baby, I myself am not a qualified doctor but from what I had researched swelling in the hands and feet were not symptoms of a sinus infection. Had he seen this reaction before, I asked him ? Are you experienced in treating babies ?
This is my baby!
Thankfully, he asked the qualified pediatrician on call to come and review London. Upon entering the room she asked me if London had been sick recently, and this triggered my memory to 2 weeks prior to this incident, London had developed a fever and it was high! I would administer her panadol and nurofen and it would bring it back down, I did this for 48hrs as her fever kept rising after the medication wore off and then the fever subsided after those 2 days. She then returned to being well and her usual self …… She watched London and how she was interacting and her use of her hands and the swelling in her eyes (that was now returning) she asked me the question that started this long journey to health for London and cemented to me that this was serious….
“Is there a history of Kidney Disease in your family?”
We were given information on what this ‘could’ be but first we needed to obtain a urine sample from London to test for any traces of Protein, before we discuss a possible diagnoses for her and get too far ahead of ourselves. We were given the option to remain at the hospital in the waiting room or go home to get her urine sample, being mid COVID and the worry of that on top of what was happening we chose to go home and get this sample in comfort and hygiene and return with the sample as soon as possible, we were advised to please be back within the hour as this could be serious.
Our dear friend came as soon as I called her to pick up my son for me and we watched London as she played and couldn’t believe what was happening, she was still so happy!? How could something be wrong with her kidneys. I should be back this afternoon around 4 I said, to pick up Noah. Completely unaware of what was about to unfold.
We went straight back into the hospital with the sample and the triage nurse tested it for protein and pretty quickly the results showed that she had large amounts of protein leaking into her urine.
She was mindful of Londons age and suggested we apply some numbing cream to her arms as the doctors would likely want to draw some bloods from her.
Turns out that mothers instinct is a strong and reputable feeling.
I wheeled her pram down into the ED room that we were being treated in and they drew the curtain. I sat there and looked down at her, she was smiling and pointing to the bed next to us and my heart just sunk for her. Our poor baby girl, what is happening
I was asked to obtain another urine sample from her that could be sent off to John Hunter Hospital for testing in the labs, to confirm specific ratios of protein loss. They handed me a jar and we hoped for the best.
Taking a urine sample from a 13month old baby is never going to be easy, she jumped across the bed wriggled around and the minute I stood up to stretch my back she would wee in the corner of the bed ……
It was now 5pm and we were still in this room in ED trying to get her urine, we had arrived at 8am so the fatigue and frustration was starting to arise. She eventually fell asleep in her pram as I rocked her back and forth to the sounds of nurses, doctors and patients all going about their night and as I rocked her into a deep sleep I was starting to take my mind to awful places of concern for her, what if this is something serious ? Is she going to be okay ? I thought she could of been having a reaction to something and now they are talking kidney disease.
We managed to get her urine sample and it was sent to Newcastle, and in the interim they were wanting to do a blood test on London. My heart sunk, dear god they cant hold her down and blood test her she is just a baby.
A pediatric nurse was called down to assist, the nurse practitioner was called in, the doctor was attempting the bloods and I had the job of holding her down and comforting her sweet little face as tears ran down the both of us. They had 3 attempts of inserting the needle, and the bruising was instant and started to cover the areas they had been, on the third attempt they retrieved enough blood for testing and they left the room allowing me to comfort my hysterical baby girl in my arms as I felt like my heart had been ripped from my chest.
6:15pm It felt like not much time had passed, and the team of doctors entered her room. They surrounded London and I and asked if I wanted to sit down on the bed while they talked through her results. The pediatrician that had been assessing London said to me, I am really surprised at London’s blood test results because she seems very happy and shes presenting well, with all of her observation checks perfect. . . . . BUT
London has ‘Nephrotic Syndrome – Idiopathic Minimal Change Disease’
Nephrotic Syndrome – where the the body passes protein into your urine and not into your blood, this is caused by damage to the blood vessels surrounding the kidneys causing them to not filter and they become ‘leaky’
Idiopathic Minimal Change Disease – a once off reason for the kidneys to start leaking, this can be caused by a virus that has attacked the kidneys and damaged the blood vessels.
In simpler terms, they were quite certain that the 48hr virus that London had 2 weeks prior was the cause of her Kidneys to start ‘leaking’ protein,
This meant to that she had no protein in her blood and this causes significant swelling as fluid starts to build up, particularly around the eyes.
The virus had attacked her kidneys, and although the virus was no longer in her system her immune system was continuing to attack the kidneys causing more damage day after day after day and for as long as she continues to leak, her kidneys continue to become scar’d.
In her blood work, they were assessing all of the results including white blood cells, red blood cells, liver markers etc. but the main indicating factors of her condition they needed to see were her Albumin Levels (protein) and her Protein/Creatinine Ratio (Kidney Function) as we need protein in our blood for our blood to flow smoothly, and we need our kidneys to filter out the waste and put the goods back into our blood. If both of these things aren’t at sustainable levels, our body starts to shut down.
Blood Test Results
Albumin (Protein) Levels in Blood – Average is between 35-45
Londons Levels were only – 15
Protein/Creatinine Ratio Levels in Blood – Average is less than 50
Londons Levels were – 2769
Urine Test Results
Protein leaking into her urine was at a level of 10,660
She had barely any protein in her blood at all, it was all leaking out of her urine leaving her blood very thick and sticky, not flowing easily causing major swelling in the tissues of her body.
She was in Kidney Damage.
We were settled into our room on the Children’s ward with heavy hearts and a very tired and unsettled baby girl. Hoping to repeat bloods and urine sampling in the morning to start a ‘trending’ scale on what her kidneys are doing.
The same trend with her swelling, she would wake and be swollen for it to then go down slowly as the day started. This is caused by the body resting overnight in the same position allowing fluid to build up and it not be moved around the body.
Thursday 16th April
Day 2: In Hospital
London soon stole the hearts of all of her nurses and doctors, she was still so happy and energetic and her little smile was the highlight of our days in those 4 walls.
London’s care was being overseen and reviewed by the Renal Specialists at Westmead Childrens Hospital in Sydney. She was now under their ‘umbrella’ as she was in kidney distress with a team of specialists identifying as Nephrologists.
Bloods, urine, obs.
Bloods, urine, obs.
Bloods, urine, obs.
Todd was on the other end of all of this, at home with our other baby. Our son Noah
Holding the fort at home while we navigated this new uncharted and scary territory with London. COVID meant that you were technically allowed one parent with a child in the hospital at one time, when we presented with London I was told that due to her age and the enormousy of the situation that we would be allowed Todd in with us when needed as the pediatrician worded it perfectly “These babies have 2 parents, how can we deny one of those parents to be here” We were so thankful and grateful for the team at the hospital whose care we were under, they were very supportive and caring to our family and for every question I had they were there with information leaflets and resources I could go to in finding the answers, they really were a support network.
Day 3 in Hospital
Friday 17th April – A treatment plan was discussed.
London would be commencing Prednisone Steroids for a period of 3 months at a high dose of 20mg daily. Her immune system will be completely wiped out and she would be unable to attend daycare due to the risk of infection. Under no circumstances should she be given Ibuprofen, as this medication is heavily processed through the kidneys. She is on a 700ml per day fluid restriction to minimize more fluid build up in her body, a low salt diet as this is heavily processed through the kidneys and she would need to have urine testing done daily.
We were still in shock, although we had a plan and we could see a light at the end of that 3 month tunnel and our baby was going to be okay, this was a once off . . . . . . .
My biggest concern was the steroids and what that would do to her in those 3 months.
- She would gain a significant amount of weight
- She would increase her appetite drastically
- She would be highly aggressive, irritable and unsettled
- Her growth would be stunted
- She will have no immune system
Now, looking back at that time I often think, I thought steroids were going to be our biggest worry . . . wow, I was in for a shock.
Day 4 in Hospital
London commenced her first dose of steroids.
When we were told London would be commencing steroids the fear that I felt surrounding this was something I was trying to internalise and put into perspective the health deterioration she was in & that to aid her immune system into stop the attack on her kidneys we needed to suppress it. I had researched high and low in the days we were in hospital on what worse case scenario would look like for her and best case scenario, and a 3month steroid stint was best case scenario – believe it or not.
We had now started her on a medication that would prevent her stomach from growing ulcers and causing pain, from the steroid stripping her stomach lining.
The decision was made to administer London with her vaccinations that she had missed at 12months . . . . This is a topic that I know can hit particular nerves with people in terms of vaccinating a child who is sick.
London was sick, she was VERY sick. And looking back now I cant change that decision and we did what we all thought was best at the time including the medical staff and us as her parents and advocates.
The reasoning behind the vaccinations was to give London partial (if any) coverage in the case that she would contract chicken pox or a deadly virus or bacteria while she was on steroids, and this was how they backed their decision. At the time I was completely overwhelmed to say the least, I was frightened for her & I put all of my trust in the doctor that was on call on making that decision. From everything I had read, administering vaccinations while on steroids essentially means that London’s immune system would be killed off from the steroid, they would then inject a ‘live’ vaccine that has traces of the virus in it (for example, chicken pox) and in a normal situation your body would create antibodies to that virus because its a small dose, you would then have antibodies in your system if you were to contract a larger dose of chicken pox in the future. However, London having no immune system – the decision to vaccinate at this time was questionable.
London was held down and jabbed in both arms and both legs with 4 vaccinations to hopefully give her ‘partial’ cover while she was immunocompromised.
We were finally discharged from the childrens ward to commence treatment at home. We had to collect urine from London every single morning and do a Urine Analysis test to check her levels. When London presented ‘negative’ protein in her urine for 3 consecutive days she would be classed as in ‘remission’
A word we wouldnt be hearing for a while.
Day 1 – being home
Saturday 18th April – London was extremely unsettled, irritable, wasn’t sleeping and essentially we knew – she was in pain.
She wouldn’t let me out of her sight she was crying at my feet and I just felt helpless for her and that old ‘mothers instinct’ feeling was starting to arise again.
I had checked her morning urine and her protein levels were still extremely dark, even more so then the highest colour on the test. So I knew the protein was still leaking. When reviewing her Urine Analysis – London was showing high levels of blood in her urine, then when looking at her white blood cells marker it was showing a extremely high reading indicating a infection . . . I just straight away rang the hospital, i’m desperate please help us something is wrong.
I was asked to gain another urine sample, a clean catch and take this into the hospital for sending to John Hunter – we think London could have a possible UTI infection.
This was reality, this was me laying in the cot with her after her screaming for me reaching up and I would cuddle her and she just wouldnt know what to do she was restless and throwing herself around. She eventually settled after lots of calming and surrendering to the fact that she is not herself right now and she needs me. She wanted me touching her face with mine. Seeing her little hand grasping my shirt, she needed me more than I realised.
Day 2 – Being Home
Sunday 19th April –
Her morning urine analysis was done again this morning after advise from the medical team. Showing blood, protein and infection
We still have not received the results from her lab test that was sent yesterday to confirm a UTI infection and we are eagerly awaiting.
Day 3 – Being Home
Monday 20th April – UTI results were in with only half of the data, a trace of bacteria growing was shown on these results. They werent quick to administer antibiotics due to her being on steroids and a inconclusive test result . . . . meanwhile London is screaming all day, all night and a complete mess.
Second half of the test has come back, as inconclusive.
They are now wanting another urine sample to send off . . . . . .
By the time we send this urine sample to John Hunter, and the results are back we are now looking at Day 7 with a possible severe UTI infection.
London has now put on 1kg since we arrived home from hospital, in swelling. I am now starting to compare photos in her appearance to present to the peadatric team
The steroids arent working…
London’s first pediatric review – since being discharged from hospital
She had gained 1.5kg in swelling
Her clothes and socks were leaving imprints on her skin
She wasn’t sleeping
She wasn’t eating
She wasn’t wanting to drink any water
She was lethargic
She wasn’t the same baby.
I expressed my major concern surrounding her weight gain and swelling, and the pending UTI that hadnt been confirmed yet. The team assured me that her blood pressure was stable, her temp was stable, her oxygen sats and heart rate were all stable and that we needed to give the steroids time to work, it can take up to 4 weeks for steroids to show their effect and improve on symptoms of the leaking kidneys. We were only 1 week in
Results were in from the second lab test on Londons urine, they were inconclusive.
They now wanted to perform a IN-OUT catheter to drain urine directly from London’s bladder to rule out any doubt on contamination from another source, this would be a ‘clean catch’ from the bladder to ensure they were administering antibiotics only if absolutely necessary.
Taking London in for this appointment shattered my heart. Has she not been through enough?! Another intervention, holding her down, the crys that come from her helpless little face
They allowed both Todd and I in for this appointment, thankfully as I was feeling extremely fragile by this point for her. The procedure was complete and by the time I had put her nappy back on and dressed her, I picked her up and the screams that came from her I still remember the look on everyones faces, she was crossing her legs and pulling them up to her chest, squirming around, she was hysterical.
Thats when we knew, she must have a UTI infection because of the pain she had after that procedure was heartbreaking and completely obvious that it had irritated an already swollen and infected area.
She had now grown a thrush infection from the use of antibiotics, her nappy rash was to extreme and she was prescribed a anti-fungal cream to be applied religiously.
Day 9 – being home
Results were in. London had a severe UTI that has now gone untreated for 9 days. Her temperature was not rising from the infection because she had no immune system, it was going undetected. A very dangerous and scary thing to be happening to her during a time her kidneys need to heal. Antibiotics were commenced immediately on a high dose
This is where London’s health deteriorated drastically
These next images of how bad she got have left permanent scaring on my thoughts, and my heart. To see your baby this sick and knowing ‘its the process’ while we wait for steroids to start working is nothing short of f*cking cruel
London was unable to open her eyes of a morning.
Wednesday 29th April – the scariest day of my life.
I woke to London basically so lethargic she could barely walk. Her face was yellow, Her stomach was so swollen and enlarged I literally ‘gasped’ as I unzipped her sleeping suit.
She needed help. she needed help today. she needed help right now
I scooped her up and packed a bag, I called the hospital and basically said I’m coming in and we need a pediatrician now.
We were greeted immediately by the wonderful team that have seen or heard from us daily since we were admitted into hospital 2 weeks prior.
We were seen by a pediatrician that also works out of Westmead Hospital and is familiar with Nephrotic Syndrome, she done a thorough and in depth assessment on london and the tears I couldn’t control when seeing London lay there with her arms wide open laying flat on the bed looking at me, like she was lifeless and had no fight left to give I begged the Dr “Please! Please help her”
The doctor was honest with me and she said, London is in a critic condition right now she has built up fluid in her abdomen and on her chest. The steroids aren’t working right now, and her body is fighting a very up hill battle. We are going to admit London into hospital, you best call your husband to let him know.
The sheer reality of what was happening and the seriousness of her condition had me shaken. London was absolute agony & there was nothing I could do to help her but sit back and let the doctors intervene
She was cannulated immediately, and bloods were taken.
London was SO SWOLLEN that they were finding it hard to locate veins, she was dehydrated and it was making it difficult. The canula only took 1 attempt and they were able to take the blood from it also, so we secured it in place and were so hopeful it would last long enough to see out her stay in hospital and not have to re-attempt another one.
Blood results were in.
Albumin (Protein) Levels – Average is between 35-45
1st Test results – 15
Current test – dropped to 5
Protein/Creatinine Ratio Levels – Average is less than 50
1st Test results – 2769
2nd Test results – 6500
Protein/Creatinine Ratio indicates kidney failure and life expectancy of the kidney. 2500+ indicate that the kidney will have a life expectancy of maximum 4 years – London was up to 6500.
London had no protein in her blood. London is now moving into Stage 2 of Nephrotic Syndrome which could mean genetic Kidney Disease.
She was now being monitored hourly
She was taken to have a ultrasound on her abdomen to confirm the fluid and to what extent
With communication with the Westmead team that were overseeing Londons care, they were making the decisions on her treatment. She was now being administered Albumin Infusions through a drip into her canula, to increase the albumin (protein) in her blood artificially, giving her body a chance to heal. She was now on a Diuretic, which essentially drains fluid from your body out your urine. Her nappies were being weighed to track how much fluid she was dropping compared to the how much fluid she was taking in. She was now on a reduced fluid restriction of only 500ml in a day including liquid foods like yogurt and juicey fruits and we had to track this and let the nurses know when she would take fluid, some nights by the time it was bed time and to have a bottle to drift off to sleep she had maxed out her fluid intake for the day and we weren’t able to offer a bottle. This meant I would rock and sooth this baby girl to sleep while she cried reaching for her bottles, eventually she would fall asleep from exhaustion.
London now weighs 2kg more than she did on first admission. Terrifying weight gain, for her for us and for the medical team to see.
Londons ultrasound results showed that she had fluid on her chest and her abdomen
She also had a significant infection on her left kidney from her UTI travelling up the tract to her kidney.
In the 2 weeks that she was on steroids, the amount of healing her body was trying to do was completely over worked. She was batteling a UTI, Kidney Infection, Odema, vaccinations and leaking Kidneys. How was her body supposed to keep up with that
London was now hooked up to a machine for a 4hourly round of Albumin Infusion. They commenced the first dose during the day when she could be monitored for adverse reactions and side effects to the treatment, this would be repeated through the night for another dose.
This meant containing our 13month old in a cot for 4 hours, amusing her with lots of Wiggles, cuddles and deferring her attention from the long tube connected to her canula that she wanted to rip out every chance she got.
This 4hour round would then be followed by a 1 hour round of Diuretics to drain the fluid from her body.
This 1hour round would then be followed by a 1hour round of Antibiotics to treat her UTI, through a intravenous line is the quickest and most effective way to treat the bacteria.
6 hours later, and we were able to detach her from her Intravenous Machine. Enough time to take her for a quick play on the wards play room.
Her favourite time of the day
Day 2 in Hospital – re-admission
Todd was able to come into the hospital before and after his work days, on his days off work it was between spending time with our son and washing, drying and bringing up fresh supplys to us at the hospital, helping me occupy London during her 6 hour rounds on the IV Line . . . . This was being done daily.
Meanwhile we were dealing with the mental and financial effects of having to close our business during the COVID pandemic.
Day 3 in Hospital – re-admission
Bloods, urine, obs, 6 hour rounds on the IV Line
Day 4 in Hospital – re-admission
We were moved into a ‘suite’ on the childrens ward which was more of a motel room style, we had our own lounge, cot, kitchen, bathroom and bed for myself, a TV and space for London to play. We were tucked around the corner and had privacy, making it feel a little less ‘clinical’ and a little more like we were comfortable . . .
To be able to see my little boy I would need to wait for London to be having a nap, the nurses would keep their eye on her while I left the hospital ward and outside to see him for 10minutes, a quick cuddle and kiss and to then leave him again to return to London. He understood why, but at the same time he didnt understand why, he wanted to see his baby sister and we were keeping her from him. While I was physically with London every day my mum heart was with Noah at the same time wishing that none of us were going through this. We had no visitors to the ward, no friends or family were able to enter & during an already awful gut wrenching time for our family we couldnt even have support around us to get through this . . .
The albumin infusions started to show some improvement in her swelling, alongside the diuretics that were dropping her fluid from her body she was starting to look more like our baby girl.
She was dropping approx 300-400g in her nappies, to us we thought WOW that’s incredible! To the doctors, they were hoping to see around 800g per day. To essentially bring her health back to where it needed to be
All of our luck with cannulas was coming to an end. Towards the end of her 4hour albumin infusion the IV machine started to beep – ‘line blockage’
The nurses would come in, re position her hand while she slept and the machine would continue to flow. 10 minutes later – ‘line blockage’ and they would repeat the same thing, 10 minutes later – the same thing.
We were all hoping this wasn’t the end of her canula line, and that it needed to be changed. She only had 2 hours left of antibiotics and diuretics to get through while she napped.
10 minutes later, I look down to see liquid all over the sheets where her arm was positioned and her arm soaked. The canula line had failed
London had to be woken up from her sleep to be re-cannulated and another traumatic experience for her and us, holding her down while they locate her veins. Another afternoon of a hysterical baby girl just wanting to get out of the cot she has been in for 4 long days.
Sydney Renal Specialists were liasing with the Taree team hourly from the start of our re-admission and we had secured a treatment plan.
London will be having surgery on her kidney. They will do a fine needle biopsey through her back under general anesthesia to take tissue from her left kidney. This will then be put under microscope to determine the degree of scaring, the degree of damage and to what ‘disease’ we are looking at.
The steroids have not worked to this point and they have deemed her as
Steroid Resistant.
She is now battling Steroid Resistant Nephrotic Syndrome
We now need to determine what stage of Nephrotic Syndrome she is at to ensure we get her onto the correct medication to help her.
COVID seemed to be playing a major role in the way the country was operating by this point, to a scary realisation that we were unable to get a helicopter to transport her to the Westmead Childrens Hospital. The helicopters were being capped to only 1 available, that would be of service for ’emergency’ life or death situations so they had to ensure that the patients needing transport were of that criteria. They offered us an ambulance to transport her the 4 hour drive or that we had the option to drive her straight there.
We made the decision that we would transport her.
Her surgery day was planned for in 2 days time.
In between comforting my sick baby & every thing else that was going on behind the scenes I was only 4 weeks into my first year of Uni.
I started in February, to then have campus close down in March due to COVID, to then have London become sick. I was doing online classes, assignments and tests between 8pm – 12pm at night when London would be asleep in the hospital. I would stay awake to catch up on what I needed to submit & the stress of the amount of work that was piling up was SO overwhelming I didnt know if I could get through it all and pass the first semester which I cried about more times that I can remember. I had waited over 6 years to start this coarse and finally do something for my carer that Ive dreamed of, to what felt like was being pulled out from under me.
I would stay awake for every 2-3hour obs check they would do on London because the minute they put the blood pressure cuff onto her arm she would start to scream and it would be a re-settle all over again. And I would repeat this every time they come in through the night
I was so consumed with anxiety and stress I didn’t eat or sleep well & as a result I had now lost 5kg.
Day 5 in Hospital – re-admission
It was discharge from our hospital and transport day for London.
She would need her daily 6hour round of IV Fluids before we could leave the hospital. On the morning rounds the on-call pediatrician (one that we had not seen before) came through to see London before we would leave and ensure all of her notes were up to date, paperwork was sorted and that she was well enough for travel. She asked that the nurses take Londons recent canula out, so that she didnt have to travel with it and risk infection of the area and we didnt then have to care for it while we travelled, and that sydney team would want to do their own for surgery the following day. At the time I think she thought she was doing the right thing in making this decision, however it would lead to the most traumatic night of Londons little life, removing the perfectly working and secure canula that she already had in.
After a long morning, the swelling that London had dropped was being packed back on and the albumin infusions and diuretics were beginning to have little effect anymore.
It was time to make the trip to the big smoke. And start a tremendous and traumatic experience for our family
Our little man would be staying with his grandparents while we make the trip, due to COVID not being able to have him visit London in the hospital or come down to Sydney with us has pulled on my heart strings and I was missing him so much.
We had all of London’s discharge paperwork and results from her tests in Taree that we were to hand over to the Sydney Team who were expecting us. They advised what ward to go to when arriving and that they would be waiting for us
We arrived to Sydney at 5pm, unloaded the car packed the pram to the brim with bags in each arm – not knowing how long we would be staying for.
We walked through the front doors at the emergency of the westmead childrens hospital to be stopped by nurses covered head to toe in Protective Wear to be screened for COVID19.
They then refused Todd entry into the hospital doors.
1 Parent Only
We begged them to please let us walk up to the ward and get all of the luggage to her room and to say Goodbye to London before he had to leave us . . . . They Refused.
I loaded up my arms with all of the bags he was carrying and he gave us a kiss goodbye.
A security guard came over to help me find the ward. I walked down a HUGE empty hospital floor to the lifts where he said ‘Your on Clancy Level’ and left me alone.
I have never felt so scared. My stomach dropped as tears just started rolling down my face, I was shaking so much I couldn’t hold the bags and I had to stop in the hallway and just hold my mouth while I was internally screaming. I didn’t know how I was going to do this alone
It was 5:30pm – We entered the ward and the team of nurses were all sitting behind their station, this is when we gave them Londons large file and they advised us that she would need bloods done tonight, and when realising that her canula had been removed they would need to re-cannulate her tonight after hers was removed this morning. This would be done by the doctor and she would come down and get us when the procedure room was prepped . . . . . . There were kids walking around with IV Machines and bandages, Chemo Bags, Wheelchairs. We walked down to our shared room that had 4 other beds in it, alongside Londons Cot.
This was our space. My sleeping and living space for the next however long we would be here, next to a tiny cot for London to sleep in. I just wanted to turn around and take her home where she was safe
A nurse came in to show us around the ward and where all of the facilities were. She advised us that we were too late for a dinner order so she would bring London up a sandwich . . . Parents arnt fed here so you will need to organise your own food. Her TV wont work during your stay, sorry. Parents are unable to use the shared toilet in the room we were in so I would need to leave London in the cot walk down to the other end of the ward to shower and use a toilet . . . . and you will need to pull out the recliner chair and make your own bed and change the sheets when needed which can be found at the other end of the ward. And I was expected to do all of this while I leave London alone in her cot, because another parent isnt allowed in the hospital . . . . WOW
We waited in our corner, in the cot for 3 hours . . . . .
They had put numbing cream on her hands when we first arrived, so by 3hours they would in-effective.
I went to the desk and asked when we would be seen over 5 times . . . waiting on a doctor they said.
The doctor finally arrived at 8:30pm to a nurses station that couldnt locate Londons file that we had given when we arrived. So she was yet to be admitted into the hospital system . . . .
The doctor was then paged to go elsewhere.
By this time all of the lights on the ward were turned off and it was dark with fairy lights lit up along the roofing of the long dark corridors.
London is usually fast asleep by 7pm, we had travelled 4hours and she had not eaten a proper dinner and was on a fluid restriction. It was 9pm and I walked up and down the dark quiet empty corridors for 40minutes rocking my sobbing hysterical baby girl in my arms and I could feel her body get heavier as she finally went into a sleep, she couldn’t stay awake any longer. I felt my pocket vibrate and my husband “How are you girls, whats happening”
Ive been through a hell of a lot in my 26 years and as sad as that is, I’ve seen awful things and experienced awful events that have brought me to my knees but the fear I had while standing in this corridor was like nothing I’ve ever felt. I could feel myself start to have a panic attack in this moment, in a dark corridor by myself SO ALONE and so far from anyone I felt safe with in this traumatic time I had to cover my mouth and cry into my hands so that nobody heard me, I literally dropped down onto a chair in the corridor and felt myself hyperventilating, I had no control of my body I was hysterical. This moment was when a wave of fear just washed over me like I was drowning. In this moment I felt like I was drowning
How is this policy of no support partners justified, I needed him with us.
I didnt know how I was going to be able to hold it together for London, who was going to be strong for her because I was broken.
10pm we were asked to come down to the procedure room
As we entered there were 4 nurses ready to help London be held down. They wrapped her up like a burrito with one arm out and before they even attempted the canula, she was kicking her legs thrashing her arms and screaming her little lungs out – she knew what they were going to do to her.
Attempt 1 – In right hand, they inserted and attempted to draw bloods with no success and pulled it back out.
Attempt 2 – In the same hand, they inserted and attempted to draw bloods with no success and pulled it back out.
“Sorry” – he said to me as he swapped hands. “Shes just so swollen the veins arent visible”
Attempt 3 – In her right hand, they inserted and attempted to draw bloods with no success and pulled it back out.
“We might have to give her a break for a minute and give someone else a call to come up”
Londons face was purple she was hysterical and in so much pain, she had bruises covering her two hands. I scooped her up and just rocked her back and forth whispering to her ‘im so sorry’ repeatedly, im so so sorry.
The nurse that was holding down Londons legs looked over at me pouring my heart out to London as we both cried and she just said to me “Do you need a break, we can hold her down”
In that moment I remember feeling like screaming at her, I know she was doing her role as nurse but her role as a human being that had compassion would have known that I was never leaving her alone so that I could have a ‘break’
When does London get a break ? She wouldnt understand why her mum is leaving her alone while she is being held down.
They made the decision to call up an anesthesia nurse that does the IV Canulas for surgerys, as they do it daily they are more trained in locating the veins. She would bring her ultrasound machine to locate the veins first, before inserting the needle.
Attempt 4 – She ultrasound her right forarm, half way up between her wrist and her elbow and she was confident she found a vein. As she inserted the canula she angled it directly down vertically into her arm and pushed it straight in – the HOWL that came from Londons mouth Ill never erase from my memory, she literally grasped for air and was stuck in that position of her back arched and head tilted. The nurse didnt find the vein in that attempt so she was swiveling the needle around trying to find it inside her arm. I cant even describe to you the pain London was in
No blood was drawn.
Attempt 5 – After the last attempt, I literally unwrapped her and pulled everything off her and picked her up and faced the wall with her so I could cradle her into my chest and feel like we were alone. I couldnt look at anyone in the room I was completely broken, clencing my hands so tight together, so so so out of control of this situation I couldnt contain myself I was just sobbing. Ive never witnessed in my life anything so traumatising and it being done to my child in front of me
I felt like they were torturing her.
And realistically I know what the aim was, we needed to canulate her arms for surgery. But it felt like we were torturing her
I layed her back down on the table and wrapped her up again, I had to close my eyes and internally close off I was whispering to myself – this is nearly over, its nearly over, its nearly over, its nearly over.
The anesthetist said to me, if we cant locate this vein in this attempt and secure a canula then we are going to have to canulate her foot.
“HER FOOT ?!?!?!?!?!!?!?!?!!?!?!” Is that a joke ?? How will she walk ??
And she basically just looked at me and said, we cant keep putting these into her arms shes in this much pain, with no results.
She changed to her left forearm and ultrasounded that area, located a vein.
Another vertical entry of the needle deep down into her arm. I closed my eyes and I can barely remember what happened after this I was so closed off and protecting my heart but the one moment Ill never forget was her gagging and starting to vomit, she was in so much shock from the pain she was heeving. How is this humane
After wiggling it around for a while she was about to pull it out and then the blood started pouring out, the got the vein
Her arm swelled to the size of a mini football. Her arms were purple and black from instant bruising
10:45pm we walked back down to our room.
Completely Broken.
I sent this photo to Todd and poured my heart out. I cant do this.
Day 6 – Now in Westmead Childrens Hospital
It was Monday 4th May – Londons Surgery Day.
She had to fast the morning of surgery so was unable to have breakfast or fluids. I basically distracted her for most of the morning untill it was time to take her down.
11am – It was time to walk down to surgery.
We filled in her paper work and the anesthetist gave me a quick run down of what would be happening, and we walked through.
They let me hold London and they injected a medication into her canula and within 2 seconds she was completely limp and floppy and they rushed her off my chest and onto the table and secured a oxygen mask over her face. They were wheeling her away and it was all over within 3 minutes
I walked down the hallway without her and I felt completely empty
The entire procedure is only 45minutes to 1hour so I was able to walk down to Todd’s motel and get breakfast and a coffee and give him a big cuddle, I hadn’t seen him since we arrived.
While London was in surgery they administered her last lot of antibiotics and steroids through the IV rather then the prednisone to see if this helps her absorb it quicker then it does orally.
They called me within 40minutes and I answered the phone to hearing London screaming MUMMY in the background hysterical. I looked at Todd and my heart sunk, shes awake and im not there to hold her.
I ran so fast down to the hospital and up the levels to arrive to surgery and when I entered the anesthetist was rocking her to sleep and she was cuddled into him, they had said that she was saying Daddy and wouldn’t let him go and that he was the only one that could comfort her. As if my heart wasn’t already in one thousand pieces by this day
We were to stay in recovery for 2 hours while London was monitored, she slept the entire 2 hours. She woke as we were wheeling her back to her room in her cot
A urine sample was taken from her this night for a check in protein
We were finally seen by the Social Worker to help us with expenses while we were in Sydney and to alleviate the cost of a motel, as we were paying $200 per night for Todd to stay – as he was not allowed in the hospital. She gave me vouchers to use down on the next level for food, which was the furthest thing from my mind or my stomach. Todd came onto the ward to swap with me, spend some time with London while I went downstairs and had a coffee and some fruit.
And you know, the entire 20minutes that I was downstairs drinking that coffee I was worried sick that London would need me or wonder where I went. I had this enormous sense of guilt leaving her
We were hoping to have Londons Biopsey results by tomorrow.
Day 7 – Now in Westmead Childrens Hospital
London handled the biopsy extremely well, she wasn’t bothered by the incision and she was quite comfortable. We were surprised, but relieved for her.
Urine Results were in.
All of her numbers were improving.
Protein in her urine
Previous Test it was 57,000
It dropped to 10,000
Creatinine in her urine
Previous test was 6377
Now dropped to 2522
Protein/Creatinine Ratio – Average is less than 200.
Previous test was 9000
Now dropped to 4003
Were the steroids starting to work ?
7pm – Biopsey Results were in.
I wasnt ready for what was going to come from this meeting with the Renal Specialists.
London was refusing to sleep so I put her in her pram and wheeled her down to the meeting room walking in oblivious to what was happening, not having my husband there for support and a over tired toddler that just wanted to get down on the floor and run.
Londons results showed that she was in between Stage 1 and Stage 2
Stage 1 – Minimal change, caused by a virus and causes minimal scaring and can be treated and not return.
Stage 2 – Focal segmental glomerulosclerosis (FSGS) is a disease in which scar tissue develops on the parts of the kidneys that filter waste from the blood (glomeruli). FSGS can be caused by a variety of conditions. FSGS is a serious condition that can lead to kidney failure, for which the only treatment options are dialysis or kidney transplant
Londons results showed ‘some scaring’ leading them to believe she had FSGS which may be genetic.
Kidney Transplant. Thats what I mentally took in from our conversation.
He was trying to explain every detail to me in which I could understand but I was so numb I just kept going back to – a kidney transplant.
The difficult part in treating FSGS is that the kidney rarely responds to treatment. It may take 3 months to respond, and by that time there may be significant amounts of scaring on the kidneys. The amount of protein that London is leaking and her lack of response to treatment they are leaning more towards a genetic form of this disease that is chronic from the way London is presenting and not responding. Her urine test !?!?!?! It showed improvement I blurted out to him! Holding onto anything I could that would take away this diagnoses
He did say, while the urine showed small improvements (in their opinion) her numbers were still high. Giving her a 2-4year life expectancy on her kidneys
He explained the medication that they would start her on. Tacrolimus
This medication is used in organ transplant patients. It suppresses the T Cell in your immune system, to stop the body rejecting a new organ. This medication for London would suppress the T Cell to stop her immune system from continuing to attack her current kidneys.
He was extremely reinforcing that this may not work.
If London is hard to treat and isn’t responsive to treatments, they will look into installing a Port into her chest in surgery, to then draw blood from frequently while we navigate which treatments work for her. To save her having bloods done so often
He advised us that as adults if we are a match, we can donate a kidney to London as long as she is 15kg or the age of 2 they can do the surgery. They would opt (if a match) to use Todd’s kidney because taking mine would mean I would no longer be able to have kids. A pregnancy with 1 kidney is dangerous and not achievable. If London is Non-Genetic, there is a chance the disease will just return again in a new kidney and it would fail. If she is Genetic, then when they remove her kidneys the disease is only inside the kidney so she would never have the disease return.
All of these serious interventions just left my mind scattered.
I walked out of that meeting silent, I had nothing left to give.
Walking past all of the rooms on the ward looking in on the babies that are bed bound, nurses preparing medications, sick children every metre I turned. And now imagining, is this going to be us, is this going to be London’s life – in hospitals.
London drifted off to sleep and I layed on my ‘recliner’ bed and I had messages from Friends and Family asking how did it go ? Whats the results, is she okay ?
No. No shes not
Day 8 – Now in Westmead Childrens Hospital
We are going home.
Todd was allowed onto the ward to go through administering Londons medication to her as they would talk us through how to prepare it.
We gowned up, gloved up, and were given instructions to not touch this medication as it can cause secondary cancers and be toxic.
This is what London would be drinking, twice a day.
We wanted to just run out of the hospital.
It took hours before we were released, they wanted to give another round of 4hourly albumin before we left and her antibiotics for the continuing UTI.
While we waiting for them to organise our discharge papers, todd was quietly hid in our corner of the room with the curtains drawn so that we could have some alone time with London before he was noticed in there and kicked off the ward. He helped me pack all of the bags and get ready.
After our stay in Sydney we had so much appreciation for the team in Taree, the care we received from them was top level & the communication was beyond expectations. We felt completely safe there knowing we had a nurse right there when we needed, as there wasn’t many children in Taree Hospital.
We were given her medications, prescriptions and discharge papers and we were on our way home to get our Son and prepare for the next few months of unknown.
We now have weekly pediatric assessments at the Taree Hospital to do urine testing and bloods. The medication that London is on absorbs differently into each individual so they have to ensure the level is right for her that it doesn’t cause kidney damage itself if too high.
Her weekly appointments are on the childrens ward and she has quickly made friends with all of the staff who love and adore her sweet little self.
We arrived home and the next morning we packed both kids in the car and we went to the beach. Its our place of peace, its where we feel at home and the kids have freedom to be kids. We needed to feel some normality.
Within 2 days on the new medication. The change in london was DRASTIC
We were told it would take 3 months to see if this medication would have any effect at all in her results. 2 Days later – ONLY 2 DAYS!
She dropped 2kg in fluid
Her home urine tests showed NO PROTEIN
no f*cking protein!
I couldnt believe it
I called her pediatric team at the hospital and near screamed it down the phone, i was ecstatic
We had our next appointment the following day and had a urine sample sent off for testing.
Urine Results were in
Protein in her urine
Previous Test it was 10,000
It dropped to 80
Creatinine in her urine
Previous test was 2522
Now dropped to 1000
Protein/Creatinine Ratio – Average is less than 200.
Previous test was 4003
Now dropped to 48
3 DAYS of no protein in her home tests and she was officially classed as IN REMISSION
Her specialists could hardly believe the results. She was showing remarkable improvements
Her urine has improved more and more and more as the weeks have gone on. Her weekly pediatric appointments then moved to fortnightly because was maintaining her remission
She was back to previous weight, she was eating again, off her fluid restrictions and we worked with a renal dietician to ensure her diet was perfect for Kidney Health. And she was back to daycare
Because her kidneys are already scar’d we still have to be careful as they can ‘relapse’ if she gets a virus again, even though she is on medication.
She has remained on the medication for nearly 5 months, and stayed in REMISSION.
To even be able to say that is incredible and I feel so incredibly blessed that her body has healed this way and stayed stable.
I have done everything I can in my control to ensure her kidneys are of optimal health. If her condition is genetic (we are yet to have the results back from her DNA testing) then she has the best possible chance to fight this.
Children can live with Nephrotic Syndrome and not relapse, however the kidney scaring that was already caused will always be there.
Fortnightly Assessments then turned to Monthly Assessments and we were moved down to the Allied Health of the hospital to see our Pediatrician rather than on the ward, as London doesn’t need frequent blood tests anymore. Her blood testing got pushed back to every 2-3months rather then weekly, as a simple ‘check up’ to ensure she is thriving.
London started to have quite the collection of souvenirs from all of scans and bloods being done. She now has a ‘hospital’ bag that has her precious teddies and puppets and items I can tell her about when shes old enough. You got these for being SO STRONG
Her current results
Albumin in her blood levels had risen from only 5 back up to 48
The protein she was leaking has completely stopped.
And she has maintained this for months.
She has also maintained 100% Kidney Function throughout this entire health deterioration. The scaring on the blood vessels of the kidneys has been what they are watching. And the 100% function is what I held onto through this entire hospital stay, she still has them functioning and when this is all over, she still has them functioning. I just repeated this to myself
She now walks into her hospital appointments strutting her stuff, confident that she wont be hurt there, she no longer associates these appointments with pain and she lets them do her ob checks – blood pressure and all. She even holds her arm out
Our worlds were turned upside down in April 2020.
We are slowly recovering from the experiences and trying to remain optimistic and strong for what lies ahead for London. Recovery or Relapse
We will be ready to fight it.
October 2020 we will look at completely weaning London from her medication, slowly. To see how her kidneys respond and give her body a chance to heal non-medicated. The risks of this medication are still quite high and it can cause other things to go wrong in her body, including reducing ‘kidney function’ over time so the plan to wean her off and see how she responds is one I’m very much looking forward to.
We all have a theory on what Londons recovery could mean. The doctors are saying
‘Could the steroids have needed more time to work, as seen a slight improvement in her urine at Westmead’
‘Could they have taken a tiny amount of scaring from the biopsey and that was the only spot that was scared’
‘Could this be minimal change for her and not FSGS’
Now we wait for the DNA results to come back. If this is NON GENETIC then I know, Shes got this!
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