I am at the Royal Childrens Hospital typing this. We are now living at Ronald McDonald House at 16 Gatehouse St Parkville. We are on the top level which means climbing stairs to get to our room, I am getting fitter all the time.
Thomas is going well at the moment. Over the past week we have had some setbacks, things seem to have turned around yesterday and today. Some of the setbacks were, his Lymphatic drainage system were leaking fluid into his chest cavity, called Chyle Thorax. Firstly the fluid was drained using a needle and syringe then there had to be a drainage tube inserted which was a bit tricky and took a few goes to get it in, it ended up draining about 140ml. The fluid accumulation has stopped and the drain is now clamped. It is being opened a couple of times a day to see if anything else is there to drain away and he is having daily chest xrays.
Feeds have been stopped for a week and they are considering starting feeds again soon. Breast milk is out for now as he needs a special formula. The other thing that happened is Thomas' IV lines stopped working and they tried to get other veins to work but couldn't, all the good ones had been used, they even tried for a vein in his head. Thomas had too much fluid and that made it extra hard to get a line in. Thomas now has his medication going into his thigh where they have put a deep vein line, they had to make an incision to get to it. That can only stay in for a week (until Friday) because the infection risk gets too high after a week. Hopefully there will be a vein recovered and ready to take an IV drip by then. We are really hopeful that he wont need
another IV line until his next surgery.
Today Thomas is only being assisted to breathe with the ventilator 10 breaths per minute which is a drop from 40bpm on Friday. Also his medication is being dropped back little by little. On Saturday we heard him cry. It seems that he manages to get some air around his Trachy to make sounds with. You would have never thought that you would be so glad to hear a child cry. He is also a bit more awake and he is opening his eyes a couple of times a day and trying to get his hand in his mouth. He is wiggling around too. The best news is that they are going to try and get him onto CPAP tomorrow and get him off the ventilator. It is still assisted breathing but he will be doing all the work himself. That is a huge step forward. Hopefully for us we will be able to have a hold of him again.
We are playing music to him and reading to him he likes to have his face touched and hand held and he hates getting washed (its probably a boy thing).
Thanks again to everyone for your prayers and meals I have attached a photo you can print out if you like, I hope to see you all soon.
PS. Dean is working and staying at home part of the week and coming in here the other part. Rowan has started school at North Melbourne Primary.