Skyla Manawa Temaipi 13/10/07 - 13/6/08

Skyla Manawa Temaipi 13/10/07 - 13/6/08
Click on pic of Skyla to go to beginning of her life story. Then scroll to bottom of page

Sunday, May 25, 2008

Having a great week

25/5/08 Skyla has had a really good week. She has been having lots of physio, occupational therapy and music therapy. She has also had visits from the clown Drs. She is smiling all the time which makes me so happy to see. Yesterday she had her 6th month immunizations which she wasnt impressed with. She only cried a bit. She is so brave. That night she did play up a bit. Her sats dropped a few times and she was working really hard. She also had 1 temp of 38.2. They did a chest xray to make sure she there weren't any changes in her little lungs. It did show that her right lung was a little bit more wet than before. The drs put it down to the immunizations though and her wet lungs because she has been pretty positive with her urine output. Nearly every day she is at least 200 to 350mls positive. They have been giving her lasix for that. They dont seem to worried as she isn't puffy at all. I have been starting to watch and learn about the trachy. I have held the trachy during tape changes. They have to be changed everyday and the trachy gets changed once a week. Not to keen on doing that yet. It is scary. She also has a big granulation of skin at the site. It looks pretty gross. I think ill wait til it heals a bit more. Today i started giving her her medications and i also did my first suction today. I was so nervous but it wasn't as bad as i thought it would be. Her vent settings at the moment are O2 30, peep 6, rate 15 and pc above peep 6. She doesn't really need her rate as she is breathing well above it. I am hoping they turn it off this week and then she will be on cpap pressure support. The Drs still think she will be on the vent for 6mths or so. I don't think she really needs it for that long, but its just that they want her to grow and get stronger which really will be the best thing for her in the end. With her having that extra support too it will really help her to grow. I just want her well so that she can come home. I haven't had the chance to really enjoy being her mummy and doing mummy things. I dont get to sleep next to her as you are not allowed to in ICU and she has been in ICU for about 28wks of her life and probably another 6mths to go in ICU so it is really hard. I cant just pick her up when i want to either, i have to ask to pick up my own daughter and because of the vent tubing i need someone to hold that when i do pick her up. It is so hard for me and my family. She has only ever been outside once, and that day it was Christmas day and just before we walked outside she decided to go to sleep. It was only for 10minutes but thats been her only time outside. It is so hard, not being able to do normal things. We weighed her last thursday and she was 4.98kg. She is still in newborn nappies and also still wearing 000 clothes at nearly 8mths of age.

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