Last night Sophie gave me the best night I've had in at least two weeks (sorry Evan)... a gorgeous brunette, Sophie gave me what I needed... and let me sleep through the night...
All night long, Nurse Sophie cared for Logan, getting to his machines before they beeped and making sure that Logan had everything he needed from about 12.30am, until I woke and 8.30am... what more could a mummy want?
Worth her weight in gold, I think I will recommend her for promotion and an increased holiday break!
Anyhoo... I digress again... This blog, is of course about Logan, so Logan we shall talk about.
This morning the docs came around, followed by the pain team. The docs said that Logan is doing as he should. His mucositis is becoming severe, but manageable - no infection, touch wood. The mucus build up in his throat and mouth often make him cough, and his mouth is sticky and raw at the same time. His liver is slightly enlarged, so they are going to do a scan (they come to the room), and I will keep you posted on that (no pun intended) His billirubin is 40 instead of 20, but that's not too bad cause jaundiced people can be in the hundreds. They just need to monitor the liver and its trends. He is retaining fluid, and went all night without peeing, consequently they have given him more pee juice this morning, which hasn't done anything yet! His hands and feet are often burning, and the rash has spread to his thighs, elbows and upper arms (which are not burning yet). His diarrhea has eased off, though he still gets the stomach pains from time to time. They kind staff have located ear plugs for him and Evan bought him an eye mask (we couldn't find his fancy one at home), so he is able to get more rest in our noisy ward. Even though we are in isolation, the noise is more than enough to keep him awake. There is a toddler a few doors down who screams day and night, and is terrified of everyone that goes into her room... it's awful to listen to, but they cant get near her to give her the pain relief she needs... If it was me, I think I'd sit on her and jab her in the butt! Poor thing.
Digressing again... anyhoo, Logan sleeps as I type this, with his feet poking out the end of the bed (to stop them from burning under the blankets) and his hands on top (for the same reason)... not sure what we are suppose to do when the bits in the middle start to burn, cause I sure dont want have everything exposed to the elements! The doc says it is definitely engraftment and they are just waiting for his blood counts to begin to come up now... unfortunately his red cells are down at the moment so another transfusion is required today, or tomorrow. They have run out of lines for the moment.
Logan's nose tube is now permanently disengaged and only used for meds. He prefers me to give them, as I dont rush it, so I have learnt to do this. It includes drawing stomach juices up, testing it to make sure it is acidic (as sometimes the tube can come up and pop into a lung) with a test strip, then slowly pushing in whatever med they say followed by a flush. The usual med is something I affectionately call ouzo, though they assure me its not. It has a similar name! I have become quite good at it and will put up a pic next time I do it.
On discussion with the pain team today, Logan finally agreed to have a base dose of morphine (1mg) pulsing through, as well as the top ups that he does with his manual pump (2mg), which have also been increased so that he can push it every 5 minutes instead of 10. They said kudos to him for using his meditation, which they see as being really effective, and praised him on his inner strength. But they also suggested if he combines it with morphine, it will enable him to relax more, and get better benefits from his inner strength.
If I may go soppy for a while (really this part is for Mum's only), it is so hard to watch him lie there. He is often in so much pain. I can't hug him, or hold him as it makes things worse, and even a peck on the cheek can hurt. They say it will be worse before it gets better... but still he does not complain, or moan... he does not argue and throw tantrums... he just accepts and goes into himself in a sort of meditative way. He is my baby... and this is not how it is suppose to be... and I want him to get on-line and send me a really sarcastic comment and make me laugh again!
OK!... that's all the self pity allowed!(everyone else can start reading again now) Now... a big thanks to my darling friend who laminated all Logan's pics that his friends drew when he first got sick, and sent them up here to put on his walls. They look amazing. Thanks to Nana and Grandad who send him cards once or twice a week... he loves getting them and proudly hangs them on his wall... Thanks to bed sis Amanda, who painted some artworks for him and sent those... he loves them. Thanks to Canteen, who visit Logan daily to see how he is and if they can do anything for him. Thanks to the Child Cancer who visits every couple of days, and brought some grocery vouchers and a phone topup for Evan. Thanks to Leukemia and Blood Foundation who gave us a grocery voucher. Thanks to Brad and Charlee who are looking after the house at home. Thanks to the people who stop by home from time to time with goodies for Brad and Charlee, so they dont feel alone and do actually eat a decent meal from time to time.
A big shout out to all of you lovely people who continue to keep us in your thoughts and love... we are blessed to have you...
Until then... keep smiling