A long week

After Martha's antics on Tuesday - we've had a relatively quiet week.

On Thursday, Mam and I headed to Oxford Street. It was Mark's Birthday and I wanted to get him a little present for when he came to visit on Saturday. As a treat for the nightmare couple of days we'd just endured - we enjoyed Tea&Cake in the John Lewis cafe.

We made our way around the Kids section, I could have cried looking at the lovely pink baby clothes - heartbroken at not knowing when Martha Grace will ever get to wear a pretty pink dress again.

I saw so many presents that I can't wait to buy Osh, Isabella or Martha when we finally get to have our

Christmas.

When we got back to the Hospital we found out that Martha had been agitated ever since her physio therapy session four hours previously. Her Heart Rate was 180bpm and her blood pressure map was in the 70's. Her lactate was 6 and Glucose was creeping up past 7 aswell. No one knew why.

She had an ECHO, Xray, Blood Cultures and swabs were sent and I demanded a Pacemaker Check.

Her Heart Rate was so high it wasn't safe to test the Pacemaker because in order to do so, they have to pace the heart faster than it's current rate - and a heart rate of 190bpm is dangerous. But from all the data that the Pacemaker collates - we could see that it was working, it was doing what it should; A sensing and V pacing.

At 7:30pm they gave Martha her second dose of Ketamine. Her heart rate started to calm down to a 150bpm.

So the restful day I had hoped Martha would have; didn't happen.

Friday was calmer. The nurse even propped her up in her bed so she could sit up and have a look around instead of being stuck constantly staring at the ceiling. Martha had a miserable face on her the whole time but her stats stayed the same.

Mark and the Kids came to visit for the day on Saturday. I couldn't escape the terrible feeling that I wouldn't be able to be spend Christmas Day with them. I am their Mammi, I should be the one putting them to bed Christmas Eve; I should be getting up with them at a ridiculously early hour on Wednesday morning.

I was feeling helpless and constantly in tears. Mark eventually flipped and called the consultant in, he couldn't understand why I was in such a state.

The Consultant explained that Martha's Right Ventricle has thickened muscle; thus meaning it can't relax properly and doesn't fill with enough blood to circulate around her body. She manages fine when she is ventilated but struggles when she extubated and her Heart has to take on more work. He was.confident that with a weeks rest on the Ventilator she be fine.

We asked what would happen if we couldn't get her off the vent?

Then she will need a Trachy Tube.

I must admit that I freaked out initially. But the more I've spoken to the nurses - I've grown used to the idea.

It's not what we would ever have wanted for Martha. But on Tuesday night I spoke to a Father whose 5 day old daughter suffered a massive cardiac arrest a short while after returning from theatre to have a shunt operation. The shunt had to immediately removed and their tiny little girl was put on ECMO to rest her heart, in the hope that after a few days they could re-try. Sadly it was not to be; tests showed her Heart Muscles had died and they had no choice but to withdraw support. Little Eva passed away on Friday at 8 days old.

Again I was reminded how lucky we are to be in a situation where something can still be done. If Martha needs a Trachy Tube for a short while but for a long term benefit - then so be it.

There is nothing we would dream of denying her. She deserves the best chance at life - and My God we're going to give her that and more!!!

GM

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