the next step

Maisie is eating well and growing which hopefully leads to lung tissue rejuvenation, however this growth is not happening quickly enough.

Since Maisie finished her course of steroids last Sunday the amount of oxygen she requires has been slowly increasing and is unfortunately getting to the point where it will not be able to increase any further. The carbon dioxide level in Maisie's blood is also increasing steadily. This all contributes to the fluctuations there have been with Maisie's oxygen saturation.

This is due to Maisie's severe Chronic Lung Disease which does not seem to be making a lot of progress in getting better. Maisie's little body is working very hard to compensate and adjust for this and in some aspects is doing well  and coping but is taking its toll and Maisie's reserves are running low (and they weren't that high to start with).

Once it gets to the point that the Oxygen levels cannot be increase any further Maisie will have to be intubated again, putting a tube down into the lungs and back on the ventilator. If Maisie goes back onto the ventilator the chronic lung disease will not improve and it will be extremely difficult for Maisie to get off it again. 

Mummy and Daddy had a meeting with the Consultants about the next steps. Maisie needs to start making better progress and it has been decided that the best way forward at the moment is to try another course of steroids. Maisie will get small doses of steroids both orally and through a nebuliser allowing Maisie to inhale them straight into her lungs.

There are side effects; some of them could be temporary like retaining water, blood sugar levels increasing, more acid in the stomach and stunted growth. These tend to be relatively minor and easily corrected once the treatment is completed. Long term side effects could be more significant and lead to neurological disorders.

So far Maisie has been strong and previously there have been no major signs of side effects when using steroids so lets pray that this will continue. The benefit of Maisie taking steroids is that they reduce the inflammation of the lungs allowing Maisie to be treated with less oxygen helping her lungs heal more quickly.

Also if the amount of oxygen that Maisie needs can be reduced it will give more room for oxygen levels to increased  if needed in the future.

It was agreed by Mummy and Daddy to take this course of treatment due to the risk of Maisie going back onto the ventilator. Steroids are only considered when there is a severe case of chronic lung disease.

How long will the steroid treatment last? This all depends on Maisie and will be reviewed daily.

Maisie seems to look at us very knowingly (as you may have seen from her many photos) and we are praying that this treatment will lead Maisie in the right direction.

Maisie loves her new comforter, it feels like Mummy is holding her all the time;

feeling safe in Mummys absence