Family Life

Family Life

Monday, November 22, 2010

Week 15

Mummy had a good week at home although she got cranky at the nurses as they never called her when changes were made in Toby’s care, like on the Sunday when she left, the doctor decided that Toby should stay on CPAP while mummy was away as he had a few more braddys.  Mummy was not happy. After talking with the nurses several times a day while she was away, She was told most times that his braddys were associated with his feeding. Mummy still thinks that Toby has significant reflux and that is what is causing his braddys, the doctors started him on Ranitadine, to help prevent the pain from his reflux last week but he is still refluxing. But the doctors still think that his braddys are from him not breathing instead. They did put his milk back to 2 hourly feeds though. Mummy is finding it really hard to get her feelings across to the doctors but next week she will go and have a chat about it to them.

Mummy and daddy had a meeting with doctor Chris today as on his round this am he told mummy that he thinks that it would be a good idea to leave Toby on his CPAP for another month before he tries him off.  Mummy tried to mention Toby’s reflux a few times but was cut off by the doctor. Tim the nursing unit manager was also there to help try to sort out some of the inconsistencies with the nursing staff. Mummy and daddy were shocked to hear that doctor Chris said that Toby has the worst Chronic Lung Disease that he has seen since he has been in Tas, and that he thinks that we will be at least another 8 weeks in the NICU. He also said that Toby may need some tests to see if there is anything else causing his apneas, such a brain scan or bronchoscope. But they will wait and see what happens as Toby needs to get bigger before they can do them.

Toby gets another blood transfusion today as his HB was low again. He is now having 27mls of milk every 2 hours and going well. Still having braddys at feed times and when he vomits. He is 1950g and he has really chubby cheeks. He has a bath every second day and he loves the warm water. The doctors noticed that Toby has a hernia on his left side so got doctor Fenton to come and have a look at him, apparently his left is ok, but his right may have a hernia, so they are just going to keep an eye on it, and if it gets worse or he gets pain form it they will operate.

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