After 3 days of short sleeps and long crying sessions, Samuel's doctors ordered full blood tests which came back this morning showing that he had an infection in his urinary tract, not uncommon when using a catheter. So that could have caused a burning sensation that could help explain why he's been so unsettled. The other important discovery was by a nutritionist who calculated that he has been using up more calories then have been replaced through the TPN (Intravenous nutrition) which is developed more for premature babies who have less calorie intake requirements then a term baby like Samuel. So the most common cause for babies crying i.e. hunger, has not been obvious as he is constantly receiving nutrition intraveneously rather than regular 4 hourly feeds from his mum. So we're hoping that the antiobitics and an individualised nutrition fluid with higher fats/calories will help settle him more over the next few days.
The cardiac team visited today and explained that sealing off the ductus valve which is still channelling blood to the lungs and affecting his ability to breathe independently, is the priority in his treatment plan as further treatment for his kidneys/bladder/bowels have to wait until he is off CPAP (Consistant Positive Air Pressure) and can be moved from NICU (Newborn Intensive Care) over to Starship children's hospital. The CPAP is supplementing his oxygen intake and assisting his breathing until the ductus valve can be closed, which will reduce the fluid in his lungs and allow him to breath on his own. Here's a short video clip of him during the few moments when he wasn't either asleep or crying, but his ability to make sounds is constricted by the strap around his chin that needs to hold his mouth closed for the CPAP to work properly, and his eyes still seem very sensitive to bright lights so we've hardly seen his eyes yet.
However, the challenge is being able to schedule him in for the operation to seal of his ductus valve, as Starship hospital is the only hospital in NZ that does paediatric heart surgery. Furthermore, the marjority of cardiac surgeons are in Darwin until the end of next week for their annual conference. They still have a skeleton staff remaining behind for urgent operations, but it's not clear if Samuel fits in to this category.
Due to the diaretic medicine he is on reduce his fluid levels and help improve his breathing, his urea and creatinine levels have been steadily rising again. His creatinine was down to 56 (40 - 60 is normal kidney function) but over the past few days have gone back up to 70 and today up to 90, which is a very real concern. The Drs are 'walking a tightrope' in that they need to balance reducing fluids to improve his breathing with maintaining sufficient fluid for effective kidney function. So the sooner the ductus valve is sealed the sooner his breathing will improve, and the sooner they can reduce the diaretic drugs he is on which in turn should lead to improvements in kidney function. So it's a 'jigsaw puzzle' of treatments that Samuel needs all in the right order and co-ordinated between the different specialist teams i.e. cardiology, urology, gastroenterology.
I hate waiting - whether it's for food at McDonald's or at a red light.... but this is really a challenge for me. So we just have to watch and wait for news from the cardiac team and hope and take deep breaths to keep calm! I was teary again today seeing him struggle and not being able to help him....but as our Registrar Carolyn said today 'As my mother used to say - 'slowly slowly catchy monkey' - translation = it takes a series of small steps to see a gradual improvement.
But a high point was getting to the school assembly and seeing Candace get a certificate for helping her classmate learn his maths! She was surprised to see us in the full school assembly (the parents get invited) and waved proudly from the stage. After school we took the girls in to see Sam (which lasted about 2 mins before they got bored and ended up reading in the family room). We're looking forward to the first weekend together with the girls since Samuel was born.
We may not have much to report over the weekend as surgery is normally scheduled on weekdays unless it's an emergency. So if you don't hear from us tomorrow or Sunday, you'll know that there's nothing new to report and we're taking a break from blogging, but you can be be back on the blog next week once there's been some progress with his treatment or changes in his condition. You might be encouraged to know that in one week since we started this blog it's had 958 visits from 17 different countries! We are so grateful for all your notes of support, blog comments, forwarding the website to your friends/our old friends we've lost touch with, and most of all your prayers for our beautiful Samuel. We really believe they're making a difference even though at times it can be hard to see.
Have a great weekend. Love from Francis and Shirley.