Tuesday, February 17, 2009

News From Thomas 15/01/08

Hello Everyone,
I hope you are all well. I am sending this email from the Hospital as the Family Resource Room is now open again. I am trying a different email address because it is easier for me to use when I am at the hospital. You can reply to this one or the other one or both if you like.
Thomas has been busy as usual, since I last wrote. He has been diagnosed with Pneumonia today. It is a Right Upper Lobe collapse, which means Chest infection on his right side. I am told its not a really bad Pneumonia because its just in the one spot. Fortunately Thomas has a trachy so the nurses can suction the goo out of his Trachea that he coughs up out of his lungs. He is better this afternoon than he was this morning or last night. He is back on the Gentamycin & Vancomycin antibiotics as of midnight Sunday, (he had finished them on the 1/1/08 after the Meningitis). It is very easy for Thomas to get a bug because he occasionally has saliva spilling back into his windpipe and lungs, The hardware such as the trachy and the Replogle suction tube are easy pathways for bugs to get in, and Hospitals are bug laden environments even though there is antiseptic hand gel everywhere.
Thomas is Thirteen weeks old tomorrow, or today is his 91st day. The other day when he was upset and wouldn't settle I was checking out his gums for any swelling. I joked with the nurses that we could eventually be here long enough for him to get his first tooth before we get home.
There are quite a few babies here over 100 days old. It has certainly been a long haul and we are likely to be still in hospital for another 6-8 weeks.
A chest infection is a bit of a setback. The good news is that Thomas was able to spend 8 hours off CPAP last week. He had only humidified air coming through his tubes with a bit of additional oxygen. Every other time that he has previously had his air switched off Thomas has panicked and needed to be put straight back on. This time his air pressure was switched to zero and the nurses left his tubing still connected. Maybe it was a placebo effect, because the tubing was still there he wasn't alarmed. We don't really know why he coped this time but not other times, he did really well with his oxygen levels the whole time. He even coped with a sponge bath. He was exhausted afterwards though, all the next day he slept and slept.
Talking about baths, Thomas has had 2 real baths now, he is not too sure if it is a good idea, we make them really quick anyway. It is a real job getting him and all the tubing in the bath, it takes 3 people.
Thomas is now back on breast milk, that started again on 3/01/08, things are going along well there. He is making good headway into the frozen milk because Thomas is having 38ml per hour continuous feeds which ads up to 912ml per day. I am only producing about 300ml a day at present. There is still a lot of frozen milk.
Other stuff that happened since I last wrote. Thomas had a seizure on 3/01/08. It only lasted about 25mins as the medicine he was given settled him quite quickly. He had an EEG afterwards and then another one the next day, there was no further abnormal activity. The Doctors say that they would only investigate further if he had more seizures, which he hasn't had any so far. Also Thomas weighs 5.14kg, it has been fluctuating up and down for example he was 5kg 7 weeks ago and he was 5.3kg 4 weeks ago. He started big and grew quickly but now he has slowed down, his head is growing, its now 37cm.
We have been seeing a Music Therapist at the hospital whose name is Helen. Thomas really likes her and she has bought lots of new CD's, she sings little songs to him, and she has been very encouraging of us to read and sing to him as well. She even bought him a pair of headphones so that he can listen without disturbing others if need be. I think his room is much nicer with the music playing and I put it on all the time. His old favourites are Geoff playing Sues Southwind music and Cello Lullabies, we have now moved into Baroque Guitar, Oboe and Flute. There is a Handel piece that I think sounds heaps like "Michael Row The Boat Ashore".
The eagerly awaited arrival of Baby Ella and Baby Isabella happened early in the new year, a new cousin and a new friend for Thomas. Congratulations to Amy and Drew with the birth of Ella on the 4th of Jan. Congratulations to Kay and Matt with the birth of Isabella on the 2nd of Jan. I hope you are all enjoying your babies.
I haven't updated the pictures on the Internet since New Years day, the link to the website is http://www.harveynorman.fujicolour.com.au/DeanandjulieI will post some more pictures soon.
Thanks everyone for your replies to my emails, phone calls and birthday cards. Thanks to Nina (Janine) who came and did a wonderful colour for me yesterday. Thank you I feel much better. Thanks to Dad for bringing her too.
Lots of love from all of us to all of you,
Julie, Dean, Rowan and Thomas

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