THE CHA CHI

 Since our last update, there have been a few changes in Cha and only good progress. Today she was extubated at around 1:30pm and hopefully, her airway holds up okay and doesn't need to go back into intubation. Her airway is partially swollen just due to having the tube down her throat which is quite common. Charlotte had a bone marrow swab done during the week to look at why her haemoglobin was dropping and thankfully that all came back normal. The doctors are confident that they understand what happened which led Cha to need to go to the emergency and the good news is, they are working to ensure this doesn't happen again. It was a mix of medication management and haemoglobin management then put the virus in on top of that and here we are.  Our next steps are to get Cha well enough to get out of ICU and into a normal ward to recover further before heading home.  The picture attached is where Charlotte just came off her intubation and was a little sedated and feeling a bi...

 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...

We are currently in day 3 of ICU and couldn't be more thankful for the care that we have received and the efficient nature of all of the procedures that have taken place.   Cha has had her bone marrow, blood, saliva, stomach bile and bowel movements tested. At this stage, there are no signs of infection or anything to suggest that there is anything more sinister going on. Phew! She has spiked a few temps and kept the nurses on their toes with her heart rate and BP. Our little Cha has likely had a cold a few other things occurred over the last few weeks that have snowballed into hypertension, low HGB (Haemogloben) and her heart working extra hard. For most people we would fight off any serious illnesses creeping in but as she is 'fragile' she is susceptible to things escalating quickly and this is likely what we have seen here.  The nurses have had to give her extra sedation medication at times as she wakes up and in her truest nature wants to tell them to 'go away'....

 Hospital Update 1: Charlotte's hemoglobin has been slowly declining for the last few months. Her blood test last Friday showed the levels are very low. It was yesterday (Monday the 22nd) when we noticed Charlotte's behaviour really started to change and quite quickly.  Kristal took Charlotte into Sydney Children's where she was rushed into emergency. Charlotte was moved a few hours later from Emergency to ICU where she currently is now.  What seems to have occurred is the low red blood count has increased her blood pressure and potentially caused liquid to fill her right lung. Yesterday Charlotte had a blood transfusion and as I'm writing this she having her lungs drained of the fluid. At 3:45pm she will also have a bone marrow biopsy. She is sedated and the ICU have been amazing. We are also ok. We are looking after ourselves and each other.  We expect Charlotte to be in ICU for about 7 to 10 days and the doctors have said she is in a stable condition.