It was good to see our church family and catch up with you all when we came to church on Sunday. Also, thanks to Tina who invited us to her home on Sunday for a Barbeque with the families that have children with Down Syndrome. Thomas turned 8 weeks old this week.
Thomas is having an eventful week, the little infection he ad last week has eventuated into Meningitis. Menningitis is an infection in the fluid enclosed between the 2 films (Menninges) that surround the brain. It can be viral or bacterial, Thomas has the bacterial type and will be treated with antibiotics for 2 weeks or more. He also has really bad Diorrhoea at present, which is really like green water.
The doctors were able to get a long IV line into Thomas on Monday so they can run fluids and antibiotics but they are not willing to rely on that remaining functuall for that whole time so they are sending Thomas to theatre for a Broviacc line today they tell me that Surgery will happen at about 4pm. A Broviacc line is surgically inserted into a main artery they will be using the artery in his groin. The end (that the IV lines are connected to) comes out at another site further up his trunk or down his leg. This type of IV line can remain in for months (unless it becomes infected of course). It is the same sort of line that is used for some Leukemia patients.
The samples that they have taken of Thomas' Diorrhoeaa have not grown anything. We still don't know what is causing it. We are now working on the idea that Thomas might have an intolerance to his feed which is Monagenn. He is being changed to Alfaree formula today which is a different composition, it may help stop the Diorrhoeaa. The doctors have tried not feeding Thomas and just giving fluids and they have tried half feeds but the Diorhoeaa just keeps coming back.
The Doctor who I talked to today tells me that the Surgeon wants Thomas to be as well as possible before he operates, at this point the estimation is in 6 weeks time. The Pulmonary
Hypertension is still the main concern and Thomas continues to be treated with Sildenefil. Echo cardiograms are planned 2-3 weekly to check on the progress of his improvement.
Pulmonary Hypertension is high blood pressures in the arteries leading to the lungs. Basically the vessels are constricted (small and tight) when they need to be bigger, relaxed and open. This is the most serious of Thomas' conditions, as it has to be better before he can have surgery.
Thomas is continuing to be weaned off Morphine he is down 50% from the dose he was having
10 or so days ago. The pressure that the CPAP is running at has been dropped, Thomas is coping well with a pressure of 7cm and his oxygen requirement is not much higher than normal room air. These are all really good signs, along with his size, and the fact that he was born full term, bode well for the future. Yesterday Thomas weighed in at 5.18kg which is 11lb 7oz. He has moved back to room 5 although he is in a different bay now. He was moved as a result of a few other babies with changing needs, not because Thomas had an emergency.
Thomas has 2 champion Grandmas as during this past couple of weeks Betty has won the Singles at her Bowls Club for the third year in a row. Margot has won the Veterans Division in her Golf tournament. Congratulations to the Grannies. I hope you have enough room for the trophies. I have updated the pictures on Sunday and I have included a family shots album which has pictures of the kitchen. No progress on the kitchen this week except to say I bought some fairly dreadful light fittings which will have to go back.
Bye from us at the hospital,
Lots of Love too,
Julie Dean Rowan and Thomas
PS: it seems that Rowan might have to start grade 6 in 2008 at North Melbourne Primary after
Link to photos http://www.harveynorman.fujicolor.com.au/Deanandjulie