Hospital update 3

 So the last 24 hours have brought us a few more (good) answers.

Charlotte was supposed to be extubated yesterday but there were a few more goals to hit, we should be in good sted to have her breathing support removed in the coming day or two. Cha's chest drain was removed yesterday as they achieved what was needed by removing the fluid on the outside of her lungs. 

Late Wednesday evening Charlotte tested positive for Rhinovirus which presents in most people as the common cold but in kiddies, it can be a little more complicated, especially with having a compromised immunity like our Cha. She has been spiking small fevers here and there and her heart rate has spiked in those moments but those are all things to be expected in the current context. We aren't sure if this will leave her with anything long-standing like asthma, given the extra pressure on her lungs but we should be informed in the next few days.

She also tested positive for Carbapenem-resistant Enterobacterales (CRE) which are an order of types of bacteria that commonly cause infections in healthcare settings. CRE is antibiotic resistance which occurs when germs no longer respond to antibiotics designed to kill them. It won't necessarily impact Charlotte now or long term but in hospital settings she needs to be isolated and kept in her own room at all times, (not mad about no longer having to cosleep with other families) apparently this is more common than we know in kiddies. We have been told there is no major threat to Charlotte. 

On Thursday the doctors said that we needed to see more fluid removed from Charlotte's blood cells for her to be extubated and her PD (peritoneal dialysis) wasn't working as well to shift the fluid. I (Kristal) was involved in the conversation with the doctors in added my two cents on what I thought the reasoning could be. Sometimes it isn't as complex as our very intelligent doctors make it out to be ... In my mind, Charlotte needed to open up her bowels to allow for extra space in her abdomen for the treatments to do their part, the doctors wanted to take a surgical approach and I encouraged them to listen to me as we have had 2.5 years of experience in living with her care and needs. Cha hadn't 'been to the bathroom' in almost 5 days and for anyone that can cause concern. After an X-ray and my pleading with the doctors they let me know that I was in fact right! So Cha had some support to get things moving (sorry overnight nurses) and this morning at 5am, the team told me that things were working as needed to with shifting fluid. 

Here is my reminder to all parents, not just those who have complex medical backgrounds that you are your child's voice and you know them best!

I haven't seen the ICU doctor this morning but we know Charlotte is doing everything she should be doing, and sometimes shouldn't be doing like sitting up whilst sedated and trying to pull tubes out, I guess we will take this as a positive that she has a bit more energy after absorbing her blood and plasma transfusions.

I just want to take a quick moment to put a few assumptions to bed about Kidney Disease (KD) and Dialysis. These are not just for older people. You can lose 90% of your kidney function without even knowing and 3 in 4 Australians are at risk of Kidney Disease no matter if you have underlying health issues or not. Charlotte was born with KD which was secondary to her HUS. We still have no known reason why this happened as before and throughout my pregnancy, I was in good health and there were no genetic conditions detected in Scott, Cha or I. .........We were just unlucky...

The reason I am sharing this is because a lot of people ask when we share our story 'How did that happen' or 'So this was detected in utero'? or assume we were made aware prior due to a known health problem in Scott or me. This is why supporting Kidney Health Australia is important because the research and work they're doing to understand this disease more is so important. You can visit their page at kidney.org.au and see how you can do your bit.

Scott and I have been sleeping in the hostel above the ICU ward and we move to Ronald McDonald house on Saturday. I've said this before and I will say it until I am blue in the face, how lucky are we in Australia to have world-class medical treatment, teams, research and facilities for families to access. Sydney Children's Hospital in my mind is one of if not the world's best hospitals with the world's best doctors to match. 

We are tired but we are okay, thanks again to everyone who has reached out and sent their love. 

K x