18 hours off life support and struggling

Pippa is struggling a bit after a long night. She has given up some of the ground she had made.

About 12 hours off life support

It's coming up on 12 hours since Pippa was weaned off the heart/lung machine.

Things are still very precarious. Pippa is making some progress but she constantly requires interventions to balance the divergent aspects of her system, such as arhythmias, blood pressure fluctuations, heart rate fluctuations, oxygen saturation and fluid levels.

The doctors are working hard to keep her stable. The risk is that one of these fluctuations could lead to a cascade of events culminating with cardiac arrest.

It is nerve-wracking to sit and watch.

7 hours off life support

Pippa has been off life support for about seven hours now.

Overall she seems to be doing okay although there is some concern that her little heart is working very hard to get enough blood to the lungs.

The doctors are trying various medications to try to help Pippa's heart slow down a little.

Pippa off life support

Post-Op update from Dad

Pippa has come through her procedure 'okay'. She is off the heart/lung machine and her heart is working by itself.

She is still very unwell and her condition is extremely fragile.

Her lungs suffered stress during pregnancy because of the underlying heart issues and are still quite 'wet'. This is limiting the amount of oxygen her lungs can infuse into her blood. She is currently receiving as much oxygen as they can give her and her levels are a bit lower than the doctors would like them. The are giving her medication to raise her blood pressure, which will assist with oxygenation. The trick will be to lower the blood pressure without losing oxygenation.

It is difficult to predict how long it will take for her lung function to improve.

We are settling in to see how she responds over the coming hours.

Pippa's first makeover

Pre-Op update from Dad

We have just arrived and checked on Pippa.

Pippa has had a very good night and is nicely stable for her procedure. No nasty blood pressure fluctuations overnight.

The surgeon has done his rounds with his team of residents and students. He was very happy with where Pippa is this morning.

We are having some time with Pippa before they kick us out to create the surgical field around her bed - they do today's procedure in PICU rather than theatre.

Overnight the the nurses gave Pippa a bit of a wash and put a little clip in her hair. She looks very girly ... all things considered.

Update from Dad

We had a discussion with the surgeon and intensivist this evening.  Pippa has been having fluctuations with her blood pressure today, up and down.  They are managing the fluctuations with medications, but there is no clear indication what is causing them.

It seems that Pippa is not getting on with the heart/lung machine as well as she could be.  She is producing a lot of clots in the system.  Again, it is not clear why this is happening.  It is something that happens with some children.

The plan is to try to ease Pippa off the life support tomorrow morning, since she apparently doesn't 'like' it much.  The doctors will gradually wind the machine down and watch carefully how Pippa responds.  If she doesn't handle things by herself, they will re-introduce the life support and try again in a few days.  The surgeon thinks there are some good and some bad indicators, so it is very much a case of waiting to see what happens.

They perform the procedure at Pippa's bedside (creating a little surgical environment there so they don't have to move her) first thing in the morning.  We will see her before and after, but not during the procedure.

If Pippa can get by without the life support this soon after her surgery it is an excellent sign for the future.

Photo from Day Three

Here is a picture from Day Three.  Pippa is still wearing her beanie and has her teddy bear for company.

She is a little puffy, most noticeably around her eyes, although also in her extremities.

Photo from Day Two

Here is a picture from Day Two, showing the bruising coming out on Pippa's face.

She is wearing a beanie knitted by Nana Bev, although we cannot put it on her properly because her body temperature is closely monitored and controlled by the heart/lung machine.