We are still at the hospital as you are probably aware. It is day 43 today and Thomas is going very well he was 6 weeks old yesterday. Thomas was moved to a new room (Number 8)
which is smaller and is quieter because his bay in Room 5 was needed for a more critical baby and Thomas is pretty stable at this point. That was good news. He has been weighed again, 5.095kg, that is about 11lb 4oz in the old scale.
I was able to hold Thomas yesterday as well, that was very good. He is a very cuddly baby.
We had a picture taken. I have been playing music to him, I am playing Sues music over and over, its very familiar because he has heard it every week at church. There is another CD with classical music that I am playing too. I am still expressing milk even though Thomas is not having it at present, I am hoping that he will be able to have it later on. Other medical stuff from last week.... The transfer from Respirator to CPAP has gone fairly smoothly. Thomas had a couple of events where he had to be put back onto the respirator fairly quickly, but he was soon back to CPAP and has remained with CPAP only for the last 4 days. The Chylothorax (fluid collecting in his chest cavity) has stopped and Thomas has has his chest drain tube removed yesterday. The deep vein IV lines were removed without infection or incident. His milk has been increased to full feeds without incident so all medicine is now being given orally (into his tummy tube). The morphine dose was weaned back 10% yesterday and will be weaned further on Saturday. We are weaning him back because he has had the Morphine for so long and he will need to have the full pain reliving effect of the Morphine when Thomas has his major surgery in about 1-2 weeks, that is having his Oesaphagus repaired.
Thomas is still being treated for Pulmonary Hypertension with Sildenyfil (Viagra). He is also being treated for an underactive Thyroid, which we are waiting for the results on the full testing that is being done. There is discussion about doing a study on his airways to see just how extensive the Bronchial Malachia is and at present they are trying to find the lowest possible air pressure that Thomas is comfortable breathing at. We got down to 8 but had to go back to 10 today.
It seems like a lot to take in, I am sorry, some of us just love details though.
Please feel free to forward this email to anyone who is interested. If you would like to reply that would be good. Its nice to know if this email gets to the intended destination.
Rowan is going quite well at school, he is still being himself, lots of fun and really great company, he is great with small children which the kids at Ronald McDonald House and their parents enjoy. We have had a few outings, most notably to the Melbourne Sports & Aquatic Centre and the Geelong Adventure Park (Courtesy of Ronald McDonald who also gave a magic show). Dean is working at the Shopping Centre 4 days a week and coming here the rest of the week. Josephine is able to feed the dogs on the weekends thankfully. We have had visits from both Grandmas during the last week and also Thomas' Great Aunt Shirley from Robinvale. Thank you to everyone for your visits, prayers and meals (we seem to have lots of meals
now), your support is essential.
Bye for now with love from both of us,
Dean & Julie.
Here are the links to photos etc. I try to update photos as often as I can, It was done Thursday last week. I have not attached photos this time because it makes the email too big for some servers.
The Gift of an Expressive Father
1 week ago