THE CHA CHI

17.05.24 On Tuesday this week, Charlotte went under general anesthesia to have a scan done for all the different teams to discuss her kidney transplant. We won’t, however, know the information until the 11th of June so you can imagine we are both excited and anxious.  Charlotte’s potassium has been higher than normal over the last week so medication was given and several ECG’s done to monitor any issues which all came back fine. The renal doctors are fine-tuning her medication and dialysis regime for us to hopefully go home soon. Charlotte still gets her observations (blood pressure, heart rate and temperature) checked every 4 hours so they can calibrate her BP suitable for going home.   This hospital visit has made me realise that having a boring home routine is a good thing. Even if at the time you think your life is not exciting, this I feel is a good thing. Getting out of your comfort zone is important but being bored is underrated. I would give anything to do 'normal...

Charlotte is doing really well, she has most of her strength back, sitting up a lot more, enjoying her food again and doing lots of drawing and colouring. She has completely weaned off her sedation and back to her usual sleep and wake cycles which is good.  Cha's bloods look stable and her Haemoglobin has held steady since her great blood transfusion. Over the coming week or so it will just be about getting her therapy back to a more regular regime so that we can progress to getting home.  It's so nice to see her smiling and laughing again, she definitely still doesn't like the doctors and nurses in her room but that is to be expected given all of her experiences.  Cha and I managed 8 hours of sleep last night which is unheard of in the hospital, the tiredness must be setting in! All in all, we are doing pretty well. My mantra is to have no expectations on a home date so that we have no disappointments and I think that will help us get through the next week or so. 

I thought it was timely to update the blog today given it's been a few days since we have. It's been quiet so we haven't had a lot of time to do so. We are FINALLY in the renal ward, we were able to go last week but at the last minute there wasn't a bed available for Cha so we had to wait until yesterday evening. Scott and Cha moved into the ward around 6:30pm last night and I will be staying at her bedside mostly now so that Scott can work. All of Charlotte's tests have come back inconclusive which is good, so the Rhinovirus and low Haemoglobin were what tipped the poor darling over the edge. She almost has all of the virus out of her body but still a little while until we can be sure. All of Cha's numbers are looking good (bloods and Obs) and we are really just waiting now to get her medications weaned and back on track as well as her therapy back to its regular regime.  I have kind of come to terms with the fact that we might be in hospital another couple of ...

 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'....