Post Pre-admission

10 Oct

Arrived at 11:00 and started off quite well with various tests: ECG, X-Ray, height, weight, blood pressure, oxygenation, ECHO. It was all going quite smoothly.

Little S was brilliant all day although she didn’t much like the blood test when the nurse was wiggling the needle in her foot trying, unsuccessfully, to get a vein.

Following the tests, one of the nurses spoke to us at some length about the logistics of pre and post operation:

• Little S would probably be in the cardiac intensive care unit (CICU) for one or two nights
• Then transfer to the Ladybird ward on either high or low dependency beds and likely to be home a week or so after the operation
• Whilst in CICU the hospital would find us somewhere to sleep in the hospital grounds and in Ladybird ward they put a z-bed up next to the cot
• Visiting hours are 8am to 8pm but only two at a time in CICU (although they are open 24/7 for parental visits). 

We had a short visit to see the CICU - much less scary than we had envisaged.

But, following another wait of an hour or so, the conversation from the surgical registrar provided us with quite a scary reality check. He described everything very clearly: reminding us of the details of Little S’s condition, what they are going to do during the operation and the many horrible things that could go wrong.

In describing Little S, he pointed out a couple of things that I hadn’t appreciated: not only does Little S’s current ‘plumbing’ put stress on her lungs but, because one of the arteries feeding the lungs is coming off the right coronary artery, the heart is not currently receiving as much blood as it should which could result in further heart problems. Also, the left lung is getting blood from the left subclavian artery which flows from the aorta thus receiving higher pressure blood than it would from the pulmonary artery – potentially creating more problems for her lungs.

He told us that they will use a Gore-Tex tube to connect the reconstructed pulmonary artery to the right ventricle chamber of the heart and then, in six months to a year’s time, they’ll operate again to replace the Gore-Tex with part of a real donated artery and valve and close the hole in Little S’s heart.

The most scary part was that he described the operation as ‘high risk’ – a consultant earlier in the day, Dr D’s boss in fact, had already told us that Little S has ‘very, very unique morphology’ so we had guessed that this is not going to be routine surgery but to hear ‘high risk’ so bluntly from the mouth of a surgeon was quite different.

Once on our own, tears followed.

We know that there is a risk that Little S might not make it through surgery but we have to trust in the doctors, the surgeons, our judgement, God, anything we can grab hold of to give us the hope we need to get through the next few weeks.