Today was special in that we were able to have a decent amount of time enjoying Samuel with his eyes open and alert, without his face being disguised by tubes. He remains on CPAP breathing support but is requiring very little oxygen and was able to be off CPAP for 15 - 20 minutes during his wash and bed change (see video clip). Being able to get face to face with my son was an intimate experience that has been a long time in coming.
Since the previous blog, Samuel's latest blood tests results came back showing that his creatinine had further lowered to around 64 and his haemoglobin remained stable within normal parameters at 120. His bladder is protruding further from the vesicostomy and is about the size of a golf ball. It is causing him discomfort at times and is not draining urine as was intended. The surgeons want to operate tomorrow afternoon to reverse the vesicostomy by reinserting the bladder and closing the hole, which is around a two hour procedure. In the morning they will inject dye into the kidneys to determine the flow of urine from the kidneys to the bladder and to identify any potential blockages. This is needed in order to help the surgeons consider where to go from here as the kidney drains are not a long-term solution.
Tomorrow there will be a multi-disciplinary meeting of all the specialists involved in Samuel's treatment to review his progress and consider how to move forward. While he is looking as well as he's ever looked, we are conscious that he still has serious complications that could see him deteriorate very quickly. It is also clear that any further surgical interventions will entail a high degree of risk and we will need to weigh the risks against the potential benefits for improving his condition. However, Samuel has proved this week that he's prepared to fight for his life, and as long as he's fighting, we'll be working with the medical team to give him as much support as possible.
We are mindful of the many hundreds who are following Samuel's progress from 40 countries and we just want to let you know how much we appreciate your concern and interest in his ongoing treatment and how we are coping as a family. We don't underestimate the power of prayer to move God's hand
and so we ask for your continued prayers as Samuel enters his 6th week of life with fresh challenges to overcome.
With love and appreciation.