Thanks for your replies to my last email, my mailing list has now increased a lot, if you are missing out or getting this second hand and would like to receive it directly please let me know. I have updated the online photos today. The link is http://harveynorman.fujicolor.com.au/Deanandjulie
Thomas is doing very well this week. He had a Broncogram and another Bronoscopy in theatre yesterday. the report from the previous Broncoscopy showed that Thomas had severe Tracheal Bronco Malacia but the report from yesterday showed no such condition anymore. It was an amazing change, they even had to check that they were looking at the right babys report.
Thomas is still on CPAP but in theatre they experimented to see what sort of pressure Thomas needs. It seems to show very low pressures required, enough for the doctors to question if he needs the CPAP at all.
Thomas still has events where he stops breathing and his heart rate drops and his oxygen levels fall but the doctors think that it is related to the Pulmonary Hypertension rather than his airways collapsing. The cardiac guys have done an Echo Cardiogram this morning as they have been doing every week that we have been here (and sometimes daily) which may show a slight improvement but that is not official until the boss sees the report. Thomas is still on Sildenyfil for the Pulmonary Hypertension.
Thomas has a little infection at present which is being treated with 2 different antibiotics (they are treating his roommate also with the same drugs) the doctors have ordered tests of snot, poo and blood because it is not immediately obvious where the infection is. He had a tiny temperature yesterday for about an hour.
The other stuff that has been happening... I am continuing to express milk in the hope that Thomas will be able to have it after he has his surgery. There is no talk this week of when that surgery might be as the doctors are concentrating on discovering why he stops breathing when he gets upset. I have been able to hold Thomas another 2 times since I last wrote, and Dean has held him as well.
We are coming up for 4 weeks at Ronald McDonald House. We have had some free meals, prepared and served courtesy of AXA Australia, Medibank Private and ANZ Bank, also Carlton Rotary and a lady called Sandra who brought a gang of her friends. Christmas decorations have gone up at Ronald McDonald House and all over the hospital.
Rowan and I have been to the beach, walked around Nth Melbourne, played basketball and gone shopping, we are trying keep active, and I am trying to keep him amused. Rowan is getting a bit impatient with being here, he would rather be in his own home as we all would. Dean is at home with the dogs to keep him company, He is living around our kitchen renovation which included no hot water for a few days, it is sorted out now thankfully. The new kitchen is looking brilliant, thank-you Graham and his mates who are installing it. When I get home one day I will take a picture of it and post it on the Harvey Norman website for you to see.
Finally thank-you everyone for your visits, phone calls, meals, gifts and prayers. All of you who are praying please be encouraged by the good reports we have received this week.
With love from all of us, to all of you,
Julie and Dean.
Enjoying: The First Week
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