Day +275

Things are much more stable than yesterday, so everyone...you can breathe a sigh of relief! They took the ventilator out yesterday afternoon, it was pretty horrible so he woke up and whispered a few words. So Jesse is breathing well on his own and has been sleeping most of the night. He is quite puffy, but much less than yesterday. This is because they had to give him so much fluid to bring his blood pressure up while he was critical. The only issue we have now is that his heart is beating very slowly (in the mid 40s per minute). They don’t know why this is but have done an ECG and say it’s fine, also his blood pressure in a bit high 120/90. Two days ago his heart rate was 140bpm and bp was 46/23, quite a difference! Last night they started him back on TPN, which should make him feel stronger, he has had no nutrition for 2 days...

Lily arrived yesterday; it is so good to see her. We went out last night to a local Indian restaurant (Jesse was sleeping and the nurse promised she’d ring the moment he woke). Just as we were finishing she did ring, so went to see him for a bit until he slept again. We both had a good nights sleep. We woke at 6.30 and are in to see Jesse who has been very weepy this morning. His line in his groin is bothering him and his eyes are so swollen he can hardly open them. I imagine he feels like he’s been kicked by a donkey! We were going to be sent back to Fox ward for the weekend but it is closed as there is a virus on the ward so he spent another night in PICU (Peadiatric Intensive Care Unit) and have been told that we will be sent to Lion ward by 10am. This is a small oncology ward upstairs, at least I’ll be able to sleep with him which will make life a bit easier and there is a parent’s kitchen etc.

So all is pretty good. The next issues will be getting him infection free and sorting out another line. I don’t know how they’ll manage this, we’ll have to wait and see. They may want to send us back to The Alex in the meantime. I don’t think we’ll know till Monday.

As ever Red Ruth has been a star or should I say a fantastic social secretary and wonderful friend and support. And thank you again to all of you...
I have written this on Lily’s computer and she’s taking it to the cafe that has a wireless network to post the blog. Keep in touch,
Love
C
x