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Henry's Journey

  • One year on (since this page was started)

      18 June 2017
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    Henry was only two weeks away from transplant and the Renal team wanted an ultrasound of his heart.

    We went in for this 10 days ago to be told that he was basically in heart failure (for the second time!).

    So as a result transplant date (our second scheduled date) of the 26th June has now been cancelled. He has a pulmonary stenosis (tight valve) that has lead his heart to be severely thickened. This in turn has caused a part blockage where the aortic valve is...and this is where the seriousness lies that means he is in no fit state for any kind of surgery, let alone a massive transplant.

    At this point in time, he is on a beta blocker medication to allow his heart a decrease in its workload to bring the thickening back down to normal.

    If this is successful, there will be a next step (we are not sure exactly what this is). He will need both a kidney transplant and an operation on the pulmonary valve, and which way round these will happen will be discussed in greater depth over the next month with Cardiac, Renal and Liver Consultants. We have been told we will be in these meetings (as we need to fully understand the seriousness of the decisions that we will need to make) will be an hour or more longer and we will be well outnumbered by all the medical professionals that are involved with Henry's case.

    A lot to process and once again another hurdle...we only hope that this kidney transplant is not off the cards for good!

    We once again, thank everyone for all of their support! We only hope our next update has more positive news to be told!

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  • Henry's Update March 2017

      24 March 2017
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    Time for another update, as so much has happened since the last!

    Henry is still on a concoction of medications, which now includes a growth hormone to help him grow upwards, not just outwards! This is a daily injection that we do ourselves in the evening. Alongside this, we also give him his twice weekly EPO injections (to help his body produce red blood cells). He's no longer on blood pressure meds, but there are plenty of others he now has in replace!

    Back at the start of December Henry was stable and doing well so we found a house sitting stint for 6 weeks out East Auckland. This was great while it lasted as we weren't far away from some lovely beaches and green areas with bush!

    Nearing the end of this we found a fully furnished rental in Royal Oak for 3 months. This would take us till Henry was 1 year old when we would have more of an idea how long we may have to be in Auckland.

    Just before moving into this rental property I took him into hospital as it was clear he wasn't feeling very good at all! It turns out all the weight he had been piling on (that we assumed had to be fluid retention and were trying desperately to get off with his dialysis) was real weight and we had well and truly dried him out!

    He required very close monitoring and IV fluids to put things back into balance for him and he slowly came right. This was a fairly scary time as his heart rate was consistently up around 190 and a blood pressure that was abnormally low!

    After a month in hospital we finally had our heads around his signs of dehydration which gave us the confidence to make the decisions for his dialysis.

    We managed to install enough confidence in Henry's team of nephrologists that we could do for Henry at home what was being done in hospital and he was discharged after 5 weeks.

    At the end of January it was also decided by a whole panel of doctors and nurses that it would be in Henry's best interests to go ahead and get a kidney transplant on its own, as his team feel it's the least risky option than leaving him longer on dialysis.

    The past 2 months we have been going through the process leading up to transplant and I have come out the best option (over Tim) to be his donor.

    Only a few days ago we have been given a date for his transplant, which is to be early May.

    Such excitement that we are able to do something really concrete for Henry to get him back on track, and most importantly, get him HOME!!!

    Almost 10 months in Auckland has felt like we are a world away from home and to be where we are at now, we feel there is finally a light at the end of this tunnel! There will be more in the future, but for now it's onwards and upwards!

    Thank you to everyone for their kind and generous support!!! We feel so lucky to have you all behind Henry and our family as we have navigated through these past 10 months!

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  • Updates for Henry November 2016

      18 November 2016
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    (Update written by Henry's Mum)

    Henry has now been on dialysis for 3 months, and only 2 weeks of this has finally been on the automated peritoneal dialysis machine, overnight. We have spent many days within the confines of his hospital room doing daytime manual dialysis. His hospital room, and in particular his bed and a 1 metre diameter around it, was where his whole life was for about 2 months! The hardest part with that was if he was unsettled we couldn't even pace the room with him or put him in the buggy and rock him to sleep! The day he went on night time dialysis (and it actually worked!) was the day all of our lives changed!!!

    Henry now thoroughly enjoys being outside, for a while he lost the plot as it would have been so foreign for him! The fresh air, the sun shinning on his face (there's no wonder he was so incredibly low in vitamin D!), birds chirping (massive amounts of Auckland traffic!!!)...all foreign!

    This week has marked another milestone for us...Henry has had one night down with us at Ronald McDonald House (Grafton Mews) after Tim and I were signed off for dialysis training. This weekend we will move into a one bedroom apartment here and Henry will move down for good at the start of next week.

    Our plan then is to stay here at RMH for 2-3 weeks when we hope we can find and move into our own rental property here in Auckland. The Renal team have said that it is in everyone's best interests to be within a half hour drive of Starship, so that is what we will do.

    We are still to find a place to rent and are very open to areas within Auckland itself. Our one must have is 3 bedrooms so that we can hopefully lead a more 'normal' lifestyle!

    Once again we just want to thank everyone for their kind words and support! Henry has made huge progress over these last few months and is now nearly 8kg! 2kg off kidney transplant weight!

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  • The start of dialysis

      21 August 2016
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    (Written by Justine)

    Henry is now nearly 15 weeks old and has been in hospital for nearly 12 weeks. We have had two breaks back home since being up at Starship. We have been back up for 10 days and a lot has happened in that time! We arrived up Wednesday week ago, for Henry's surgery on the Thursday. He has had the peritoneal dialysis catheter, gastrostomy (feeding tube straight in through his abdomen), a PIC line (semi permanent IV line, should last 6-8 weeks) and an endoscopy (to check his oesophagus for varices). His operation lasted 4 hours and we were back up on the ward by 8pm that night.

    He had a very unsettled time through the night and then even more so the following day. By 4pm he was in Intensive Care in the high dependency unit as his breathing became so desperate that it seemed he momentarily stopped breathing. Henry was in PICU for 5 days on oxygen, antibiotics and more blood pressure medications, as his blood pressure got up as high as 175/110! He was also spiking temperatures above 39.

    By the time we got back up to ward 26B Henry had more than a kilo of extra fluid on board, a good sign that he was well and truly ready for dialysis. And so we started him on dialysis the next day (Wednesday). He is on a manual burette system which seems to be working well for him. His Kidney function tests have all dropped as well as his weight.

    Hopefully dialysis works for Henry as he will now need to be on it till he is 10kg to get a kidney transplant. At this stage we will be in Auckland till this time, hopefully in Ronald McDonald House more often than Starship!

    Unfortunately his heart has now become enlarged with all the stress after the operation. The cardiologist hopes this will improve once he is back in fluid balance and his blood pressure is under control.

    His liver is doing reasonably well at this stage, and hopefully it continues to improve with adequate nutrition now that he is on dialysis.

    We would like to thank everyone for all of the kind and generous support we have been shown.

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  • Updates for Henry July 2016

      4 July 2016

    UPDATE (written by Justine - Henry's Mum)

    Henry now has been in hospital for 8 weeks, Starship in the past 5 weeks. The doctors predict he may not make it to 10kg pre transplant weight before requiring his transplant, meaning he will most likely need to be on dialysis for a period of time to get him up to that goal. This will require us to be in Auckland for a period of months or more to be trained to do this at home.

    Henry has had genetic testing done, which included a full skeletal X-rays, heart ultrasound, full hearing screening, eye examination and blood tests taken for genetic analysis. They are still unsure of the diagnosis and want Henry (and Tim and I) to be part of a research study for unknown genetic diseases in the second half of this year.

    So far his potassium levels have been up and down, preventing us from making our way South to home. He has had sodium bicarbonate, calcium resonium, a nebuliser and a diuretic, all to try to pull this down, as well as resonium in his formula.

    His liver function tests had been slowly showing improvements, up until two weeks ago.

    Just recently he had a fever requiring investigation by both the Renal and Gastro teams of doctors. A bladder infection was ruled out, and also a respiratory viral swab was done. The Gastro team decided they wanted to be precautionary and put him on antibiotics for suspected cholongitis (infection in the liver). An hour after starting these, Henry has been the most settled he's been for a long time. We very much hope this has been the issue over the last week and he continues to settle.

    We still hope to be home in the near future. However, this may or may not happen. Unfortunately it can't be predicted due to the ups and downs of his blood test results, mainly for his kidney function at this stage.

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