Monday 13 April 2009

Hi all

Alannah is fine but the frustrating thing about her condition is that we don't really know where we stand from day to day. One day she is doing really well and all the numbers are going in the right direction, the next all the numbers are down, medications are adjusted and we are nearly back to square one.

The doctors have told us that it is a matter of making adjustments and seeing how she tolerates them - these adjustments seem to have to be made not just on a daily basis, but sometimes a couple of times a day.

One of the main things they monitor and are concerned with is referred to as "sats". This is her oxygen saturation levels in her blood. For us it's 99-100%. Alannah's range from 50-75% and this is worrying.

Today saw Alannah being put back onto a high dosage of the medication to stop the duct from closing and they took her off the meds for her lungs and to slow down the heart beat. The doc felt that these drugs were having an affect on her blood pressure which has been low for the past couple of days. She has picked up an infection through one of her lines and is on antibiotics for that and she has also got "some bugs" in her system which they can't identify yet - we'll know more tomorrow. She's also back to being fed through her nasal tube. On the plus side her oxygen levels are up and her heartrate is good. It's swings and roundabouts at the moment. To look at her, you'd think everything was fine but inside she is fighting against so many things. As a parent, you want so much just to take her in your arms and kiss all her problems away - but unfortunately it's not quite that simple.

Before she was born, we said that the most frustrating thing was not knowing what we were facing. Now we have a diagnosis, but still do not know what lies ahead. It's tough alright but sure we have to just try and take one day at a time.

Thanks to all for your messages of support.

Take care all

Love
Ev, Tom, Mikey & Alannah xx