Stage 5 CKD makes Adrian increasingly tired, but certainly isn’t stopping him from being active during his waking hours. He can climb all our furniture, loves to dance and runs everywhere!

Creatinine 256

Adrian’s monthly blood test results are showing a pretty steep elevation in creatinine. From 209 at the beginning of September to 256 as we start into October.

The consultant here in Norfolk is aware, and the results have been passed on to the team at Nottingham. I haven’t heard anything further,  and there seems very little I can do except worry, and watch his diet and fluids very carefully.

Although Adrian has Chronic Kidney Disease – Stage 5, he doesn’t exhibit many more symptoms than at the stages before. Increased tiredness perhaps being the only noticeable difference just lately. Luckily Adrian is easily comforted by a two-hour + nap every day. Just before lunch, he’s out like a light in his pram. It ties us to the house, but is necessary to avoid a cranky and whining little lad.

I have started thinking about what to pack in our hospital bags. Adrian’s not even onto the national transplant waiting list yet. I have been told it can take around four months to get a patient “worked up” and ready for surgery. We are yet to meet the transplant team in Nottingham, who I’m hoping can give us more information on who could be likely candidates for potential kidney donors within the family. I’m hesitant to put my name forward first, purely because i’m Adrian’s main carer, and feel I need to be there for him from the moment he opens his eyes post op. Because he’s just a baby, and is under a children’s hospital, any adult donor’s operation would take place at a different nearby Adult hospital/unit. It’s possible for it to be several days at least before the donor can visit the organ recipient. Not my favourite option so far.

If we fail to find suitable donors in the family, the deceased donor list will be Adrian’s best option, and the start of the excruciating wait for an organ that matches. I read yesterday that there are currently 69 children in the UK waiting for a kidney.
During the wait, Adrian’s kidney function could of course fall to dangerously low levels, which will require an emergency hospital stay to initialize dialysis.
Packing bags is really one of the only practical things I can achieve. The rest feels like pure luck.

Kidney Transplant Letter

 

Last week Adrian and I went back to Nottingham to have a nephrology review following our stay on ward back in July. The one day trip was a success in as much as both planned tests were completed, bloods taken and he was reviewed by Dr Evans. I was told then that Adrian’s rapid decline in filtration was quite a surprise to them, as he’d been doing a lot better than it was ever anticipated for over a year. The upshot of his filtration decline however is seemingly irreversible and has simply sped up the need for further treatment. Dr Evans told me he would get a transplant letter sent out to me in the next couple of weeks, and yesterday it came.

Just an ordinary looking envelope, but the contents knocked me sideways. Most of the detailed information within I did actually know, but to see the words laid out in black and white made me feel hopelessly scared for the future.
Adrian ‘s eGFR is now as low as 14% in his single remaining kidney, meaning he is now at stage 5 Chronic Kidney Disease. Dr Evans went on to plot graphs of his expected decline and estimates that Adrian will reach ESRF (or 5%GFR) in approximately 12 months time. It is at this point that Adrian will need to receive life saving treatment such as dialysis, if a pre-emptive transplant isn’t performed.
When I think back on the flurry that was the last 12 months, and how quickly it seems to have passed us by. I can’t even believe that Adrian only has that time left before something so major needs to be done to sustain his little life.

Since yesterday, I just can’t stop thinking of all the possible complications and dangers that surgery faces. The terrible distance from home we will be if dialysis is suddenly required, and just how unfair it is that Adrian won’t be able to enjoy a carefree childhood.

Nottingham Children’s Hospital July 2018

 

On July 19th Adrian had a routine appointment at the renal clinic of our local hospital. The consultant nephrologist from Nottingham – Dr Evans comes down every three months to run this shared clinic. We were pretty happy with Adrian’s progress and growth in general, and had no particular concerns aside from the UTI that Adrian had experienced in May/June.

Dr Evans however seemed very concerned that Adrian’s creatinine and urea levels were still very high following the elevations that were caused by the UTI. He mentioned that there may be some procedures that could be attempted to assist getting his toxic levels down. Dr Evans rang his colleague Mr Shenoy – Consultant Urologist/surgeon at QMC in Nottingham to see if Adrian could be seen, and another call secured him a bed on ward E17 for that very same night.

We left clinic in a startled daze, with me wondering how on earth I could get everything together quickly and travel the four-hour journey to Nottingham at such short notice. My boys had been collected from their schools by Grandparents, but still had another day at school before the holidays began. My mind raced with all the little jobs that needed to be completed before I could get on the road. I’d never left either of the older boys for more than one night, it felt heart wrenching that I couldn’t be there for them all simultaneously.

On our way home from clinic we stopped off at Tesco for supplies. Nappies, milk, and food were loaded into the car in a flurry, then back home to pack whatever was clean.

Adrian was ready for bed by the time I finally set off at around 8pm, and fortunately he slept throughout most of the 170 mile trip up to Nottingham. I pulled into the car park at 11.50pm and to be met by what seemed like cute little bunnies in my headlights. Adrian was just rousing as I began to unload the pushchair and piles of bags. In spite of the late hour it was incredibly hot, I’d driven up in a summer dress and sandals which suddenly felt insubstantial upon recognising that one of the bunnies nearby was indeed a ravenous rat in search of discarded food. Soldiering on, Adrian and I made it up one level on the dark spiral ramp and around to the main entrance of QMC. I followed the hospital signs into west block and took the lifts up to E floor, finally making it onto ward E17 shortly after midnight.
On the ward we were met with a pleasant welcome in spite of our anti social arrival time, we got shown to Adrian’s cot in the darkened and sleepy bay and left to settle. Except the settling part didn’t really work out well. Adrian was replenished from his nice long sleep and had awoken to the excitement of being carted through an alien environment, he was totally wired, eyes like saucers, seeking out his new surroundings. He spotted a giraffe picture on the wall and let out an excited, ear-splitting shriek. An elephant picture on the adjacent wall, sent him wildly squealing and pipping, and no amount of soothing seemed to shush his little lungs. A nurse soon appeared to begin the admittance paperwork, thankfully choosing the parents sitting room to contain Adrian’s voice a little.
Back in our bay Adrian’s excitement went up to a new level. I tried everything I could think of to quiet him down, but was becoming quite distressed myself. It was so hot up there, and being on the fifth floor turned out to be quite a big deal to me. Leaving our insular little life and well trodden tracks in Suffolk and entering ward E17 at QMC was a big shock for both me and Adrian.

I’m pretty sure that no one on the ward managed to get any sleep until we had been ASBOed off the main bay, and into an empty double bay at the far end of the Ward. I was thankful that Adrian’s sleep disruptive shouts were distanced from the poorly children at last, and by about 3am Adrian and I finally managed to get some rest.

Friday morning got off to a good start, with me arranging our things, eating our breakfast and meeting the day staff. Later, during doctors ward rounds I met Dr Lunn for the first time. Dr Lunn is a consultant pediatric nephrologist who works as part of the senior renal team alongside Dr. Evans, Dr. Malik, and Dr. Christian at Nottingham Children’s Hospital. He explained to me that it was planned that Adrian would be fitted with a catheter to freely drain his bladder, releasing any possible pressure that takes place during the filling and emptying processes. It was unclear which type of catheter would be fitted yet, it would depend on the notes from Adrian’s previous tubal investigations. The surgeon would be contacted and in the mean time a review renal ultrasound scan was booked for the afternoon.

Adrian’s renal scan was a bit of a disaster, he was very upset and awkward throughout. Wriggling and writhing about in spite of plenty of input from myself and the play specialist. The sonographer managed to get the images she needed, but the whole process was a traumatic struggle. Later the images came back to show that Adrian’s kidney, bladder and tubes was very much as before. The remaining organ with large cystic chamber, his bladder small and thickened.
Dr Lunn returned to the ward in the afternoon to explain the results of the scan and told me that Adrian would be discussed and seen by Mr Shenoy upon his return on Monday.

I don’t mind admitting that I found it incredibly frustrating and alarming to have been thrown unexpectedly into a hospital stay. The very thought of staying and waiting another two days on ward until we knew more sent me into panic, and I found the rest of Friday a real trial. Adrian was fit and well, full of beans and seemed to be having a sensory overload. It was boiling hot that week too, and the ward felt stuffy and claustrophobic because of its fifth floor level and lack of opening windows. Adrian’s cot was metal and all his athletics caused a bump and bruise on his forehead. The playroom had similarly hard edges to the tables and furniture, it was very difficult to contain him both happily and safely in that environment and I spent many hours carrying him around and rocking him in the evening.

On Saturday we managed to escape the ward a couple of times. I had shared my despair with several of the nurses, who may well have found me to be slightly manic. I certainly came across as a neurotic mess, blubbing about my little family I had left behind. All the staff on E17 were very supportive but I was incredibly homesick and probably still in shock. My older boys at home were constantly at the forefront of my mind, and by saturday I was missing them like crazy. The last time I’d seen them I’d been panicking madly about the long journey and we didn’t have much of a farewell. When I looked at photos of them on my phone I cried like a baby.

Nursing staff were just doing four hourly observations of Adrian over the weekend, along with his usual meds. They were kind enough to let us off ward for a stroll which helped pass the time away as well as giving me the chance to collect supplies from the car and local shop. We went off site for a little explore, found some fountains and a bit of shade under the trees at the University of Nottingham Campus.

One real positive about being on ward E17 was ordering Adrian’s meals from their specialist renal menu. It was nice to have a break from being tied to our kitchen, on high alert, cooking certain foods to avoid further damage his kidney. Low potassium, sodium and phosphate is hard work, especially for babies. The renal menu on ward E17 seemed incredibly extensive compared to the very limited set of food that Adrian had become accustomed to at home. He tried renal minced beef, mashed potatoes and his first ever brain freeze from ice cream!
Looking back at my photos from the trip I see mostly a very happy lad in a high chair. Perhaps because it was one of the few hours that I wasn’t either holding him, or trying to catch him. Every new mealtime bowl became a hat. That was something that Adrian learned up on E17 that week. Along with how to do a forward roll in his metal cot, and appropriately timed waving… so much waving.

On Sunday Adrian and I ventured further afield. After his Obs and bloods had been done we went off for a walk to the supermarket using the GPS on my phone. The walk was pleasant enough, taking in some beautiful,l turn of the (last) century architecture along pretty streets. Unfortunately the google maps app led me to a Tesco Express store rather than the mega store I’d had in mind for supplies. A quick chat with a some locals then led me off towards Sainsburys. I never did find it, but managed to skirt various sights of Nottingham that I’d had no idea existed. Canal boats, the rocky castle surround and all of a sudden the city centre itself, bustling in spite of it being Sunday. We saw trams and buses aplenty, fairground rides, synthetic beach and the iconic Nottingham Council House. We spent an hour or so stocking up on clothes, flip-flops and amusing things to take back to the ward. It was a pretty long walk back to QMC from the centre and I relied on various strangers directions. I didn’t see a single thing that was the same as my outward stroll, so perhaps I did a big loop in the three and a half hours I was walking. I certainly felt I’d had a decent taste of Nottingham.

Monday morning brought us a visit from My Shenoy along with a large team. He explained how he planned for Adrian to have a urethral catheter inserted because he’d checked his notes from Adrian’s cystoscopy in April and he said there were no strictures. He went on to say that Adrian’s Creatine levels would be closely monitored through blood tests for a significant decrease. If the free draining of Adrian’s bladder showed an improvement in his kidney function, a further operation could be considered to relieve the pressure on the bladder whilst still offering some urine output in the usual way. Mr Shenoy explained how he could bring both ends of one of his ureters to the surface of Adrian’s abdomen which would empty into a stoma bag. The other ureter would remain intact and it would relieve pressure whilst avoiding Adrian’s system becoming dry. It all sounded frighteningly imminent, with the catheter planned to be inserted later that day under sedation.

A doctor came to take bloods and insert a cannula for Adrian’s sedative to be given. His poor little hands have no accessible veins anymore but thankfully it went into his foot instead after quite a lot of attempts and the inevitable wailing that went with it. Later we went back into the treatment room for the catheter to be inserted. Adrian was linked up to the sats machine, given an IV sedative and entertained while the meds did their work. The doctor prepared her catheter kit, with several nurses to assist. Nothing prepared me for having to watch my little man having a catheter inserted. He shouted out and cried in spite of his sedative, and feeling helpless I had a good cry too.

A catheter bag was attached to a leg strap and I was taught how and when to empty it on ward. Because of Adrian’s short stature the bag’s valve reached all the way down to his ankle… so long he could’ve tucked it in his sock!

In spite of his obvious distress when inserted, his catheter and bag didn’t seem to immobile him in any way at all. Keeping him safe on ward was even more tricky. Later on Monday I escaped the ward for an hour with Adrian resting up in his pram and ate my first hot meal since Wednesday. We went down a floor to the hospital restaurant and I replenished my own electrolytes. Now it was a waiting game until the next set of blood tests, and observing any possible improvements to Adrian’s high creatinine levels.

Did I mention Adrian loves Giraffes? I think we spent the next couple of days trying to find every giraffe in the E17 playroom. Along with books about giraffes, the toys were not in short supply. Duplo, Fisher Price and realistic looking versions were gathered up, carried around and hugged.

Doctors rounds on Wednesday brought a pleasant surprise. I was told that we could finally be discharged with Adrian’s indwelling catheter tube draining into a double nappy. His blood tests would be taken at home by our community team and follow-up clinic in Nottingham would be in 4-6 weeks time.

It was the news I’d been hoping to hear for days, which had actually seemed more like weeks, and yet it was bittersweet. I had seen so many distressingly real snippets of other people’s lives and families at QMC. The place is huge and seems to have a timezone and airspace of its own, painful moments tumbling headlong into each other, charged with emotion and then frustratingly long still pauses in between. The parents I’d met up on E17 had so many stories of their time in Nottingham. Nothing had prepared me for being there amongst those chronically ill children and their families. Adrian’s CKD had been controlled so well with medication and diet, hospital treatment had seemed somewhere off in the future. The reality of seeing the clinical intervention and invasive life saving operations taking place in real-time at QMC brought our future together into a clearer view.
I left Nottingham feeling changed in some ways, I don’t think it was hardened, perhaps just resigned. People have been telling me I am strong and brave to deal with all the extra care and concern that Adrian’s CKD brings. The truth is I’m neither. I do these things for Adrian because they have to be done, even if I don’t always quite believe they can be. Driving unplanned to Nottingham happened because it had to happen. I spent the hours that led up to leaving upset, crying and feeling that I simply couldn’t do it. No bravery involved. On the ward when I saw the transplant cool box waiting near the doors, my mind became a morbid tangle of pessimistic thoughts. Along with a strong overprotective feeling for my baby’s tiny body.

I’m not even attempting to put a brave face on this journey. It’s Adrian’s story, and during that particular week , some terrifying possibilities of his future came into stark focus.

Our First Trip Around The Sun

Today marks the first anniversary of my paternal grandson coming to live with me and my family. I spent much of the previous decade scattering my pixels across the web in the form of photographs and digital art. That creativity dried up entirely under the pressure of anxiety, and later the sheer struggle of caring for my larger newly formed family. After a whole year of virtually no web presence, I decided it was time to let something out online. This blog might be the beginning of a new outlet.

Adrian was just eight months old when he fell into our arms. His first four months of life were spent in hospital as a very poorly baby having suffered Acute Kidney Injury as a result of birth defects in his urinary tract. He had bilateral posterior urethral valves which had caused his urine/fluid to reflux back into both kidneys causing severe hydronephorosis. One of his kidneys was wiped out as a result, and the other was damaged very badly. At just three days old he was rushed off to QMC, in Nottingham to their specialist renal unit. He underwent procedures to drain his urinary tract, and his malfunctioning valves were burnt out to stop the reflux and further damage. He was given a specialist diet and medications to try to balance out his electrolyte levels. His growth faltered, and he failed to thrive.

After five traumatic weeks Adrian returned to our local hospital with his young parents. He continued to be closely monitored and was subject to various procedures and investigation. His milk was specialist, low in everything, and his meds were vital to regulating the correct levels in his blood, where his kidneys failed to do so.

At four months of age, Adrian was finally discharged from hospital, with a diagnosis of CKD (Chronic Kidney Disease), he went to live with a foster carer who had previously been a nurse. Whilst it was reassuring to us that Adrian’s wellbeing was presently in experienced hands, my OH and I knew that we couldn’t sit back and let our grandchild disappear into the care system. Adrian’s prognosis was unclear, but it was very likely that he would be unable to reach early childhood without major interventions in the form of kidney transplant or dialysis. We spoke with social services and told them we would offer him a home with our family, and were then subject to a lengthy assessment of our viability to care for Adrian. We passed the criteria in July 2017 and an SGO was passed in court in our favour. The weeks that ran up to getting Adrian to our house were pretty hectic. The contact visitation was ramped up considerably so Adrian got to know us all better, as well as training us to having a good understanding of what Adrian’s daily routines and medications consisted of. Travelling over to be with him was both a delight and terrifying in equal measure. We knew it was going to be a huge challenge, but really there was no other option in either mine or my OH’s mind.

The first few weeks after Adrian’s placement were challenging for us all. Our existing family unit had consisted of our two youngest boys aged 13 and 11, myself and my partner Dal. Our two youngest boys are both diagnosed with Autism, although they have very different sets of strengths and challenges, both enjoy being in their comfort zones at home. Each boy has their own room in our small three bedroom home, so Adrian’s cot was placed into mine and Dal’s room, and the multitude of baby equipment and belongings spread liberally across the rest of our home wherever a space could be made.

Within weeks of Adrian’s arrival both boys were back to school, each in a brand new setting. The elder lad beginning his journey at a new specialist ESMH school, and our youngest starting out at mainstream high school. School runs were tricky but do-able, sleep deprivation from night-time care and generally increased workload were slightly problematic, especially to begin with.
Medications needed to be decanted throughout the day, contact dates, community nurse visits, consultant appointments, school runs, piles of laundry and to begin with so much sick because of reflux. The new carpet we had laid for Adrian’s arrival was wrecked in those first few months.
But Adrian is so easy to love. He really is a lovely little fella and falling in love with him was quick and felt as natural to me as it had with any of my other babies. He bonded with me pretty quickly too.

Soon the Autumn turned to Winter and we cosied down to our new family routines. The boys coped exceptionally well with their new roles as Bro-Uncles and a strong bond built up between them all. Adrian sprouted hair and turned down the vomit phaser as his NG tube related swallowing reflex toughened up. solids were starting to go down without the sick pools we had become hardened to seeing at the dinner table. Adrian’s mobility improved, crawling about and bumping into things almost weekly. We battened down the hatches as he began to get around and half our furniture was wrapped in bubble wrap and pool noodles to prevent further injuries.
Adrian’s first birthday came and teeth sprouted. Then Christmas came and went in flurry of excitement.
Spring brought better results for feeding Adrian and he slowly gained weight and strength in his legs. By mid spring he was up on his feet and finally thriving with on his low potassium, Phosphate and Sodium diet. It really seemed that Adrian’s CKD was just a slight inconvenience to feeding and regular medication. Oh and those weekly subcutaneous EPO injections of course. And the monthly bloods…

In April we had a letter from Nottingham Children’s Hospital with an appointment for Adrian to have a follow-up cystoscopy to check his ureters for strictures. Although the appointment was a day procedure, it was still a massive cause of anxiety to me. We live almost 180 miles from the specialists at QMC, and I was worried about every aspect of the trip, the physical invasion Adrian would undergo, the four-hour journey and leaving my boys at home with an altered routine and their own bunch of worries. When it came to the day of the operation all went well. I’d packed for every eventuality and my sister-in-law accompanied us for moral support on the road trip.We left at 3am with a sleeping Adrian and drove through the night, arriving after dawn with Adrian just stirring. All went well with the anesthetic and the cystoscopy went without problems, we were allowed to go home just after lunch. We got straight on the road, but sat nav programming issues caused a detour across five or six counties in on an uncharacteristically hot day for late april. We finally made it home at about 8pm some 19 hours after we left.

In May Adrian suddenly became very unwell, his temperature spiked, obvious abdominal pain and discharge in his nappy. His urine was tested and came back as a nasty UTI. Antibiotics were upped but didn’t seem to touch it. Antibiotics were changed and gradually he got a little better but as soon as the dosage reduced, his symptoms crept back. Adrian’s monthly blood test results came back as alarmingly high in Creatinine and Urea showing a sudden drop in kidney filtration. His Creatinine had shot up to 233 when it had previously sat just over 100. Another quick change of antibiotic, to a gentler medicine finally knocked the UTI on the head, but the damage seemed to already been done.

Since May Adrian’s levels of toxins have gradually come down a little, but certainly not as much as his consultant had hoped. In July we had a routine clinic appointment with Dr Evans. pediatric Nephrologist from Nottingham children’s Hospital. He runs a three monthly renal outreach clinic at our local hospital, shared with Adrian’s own pediatrician. Also in attendance were our Community Nurse who visits weekly and Adrian’s Dietician. During Dr Evans Clinic things took an unexpected turn and we were told that there were a few procedures that could be attempted to potentially bring down Adrian’s high toxic blood levels by freely draining the bladder and taking some pressure off his remaining functioning kidney. Dr Evans described his function as being around 15% in that little kidney. A bed was booked for that very same night on ward E17 up in Nottingham and as we walked out of clinic complete panic ensued for me. I felt I’d been hit by a giant wave of terror. An unplanned journey to the unknown, and I knew I was on my own with it. There is only space for one parent to stay on ward, and besides my boys would need their Dad to keep everything together at home.

Our stay on E17 at QMC lasted six long nights. It was the first time I had left either of my boys for more than one night and it was difficult for us all. Once home though the summer holidays had begun and we have spent the last month re-grouping as a family and getting back into a more laid back summery routine. Adrian’s indwelling catheter has been quite a challenge in the warm summer weather. Double nappies for hygiene. keeping wee and poo separate, make for a very sweaty baby. Add a buttoned vest suit to keep inquisitive hands away from the catheter tube, and Adrian has been really quite restricted. Bathing with a catheter bag was a nightmare that was swiftly replaced in favour of rapid showering. Paddling pool is off-limits, and most nappy changes are a four handed, two person job. Our circle has stayed very small in the last few weeks, just to keep things as simple as possible. The boys are quite comfortable in their own environment at home which is a blessing as we haven’t been far and they haven’t seemed bored either.

Next week we are due back at Nottingham Children’s Hospital for a follow-up nephrology appointment and an Echocardiogram. We were lucky enough to have been able to rebook these two appointments onto the same day, and we’re hoping that it will be just an epic one-day trip this time around.