End of Week 7

Today I was in with Sam and Francis was home with Jasmine. Normally the day after surgery is very busy, but today seemed busier than normal. I arrived just as the ward round arrived - 6 people of various specialties going over Samuel's notes, with the nurse updating them on his comfort levels and most recent blood results. They were very concerned about his liver function and also the levels of calcium in his blood. They had lengthy discussions about the best way to counter these problems and it was agreed to alter his individualised nutrition and to order an ultrasound of his liver and take further bloods for more specific tests. They left and 10 mins later in walked the renal team, who then went over similar discussions, then came the radiologist and sonographer to do Sam's ultrasound which took about 20 mins. They left as the gastro team arrived - again to discuss his overall care and give their input as to his oral feeds, so he has now started breast milk again at 1ml every 2 hours, plus some medicine which is to help push this through his stomach. Then the surgical team showed up to check their handywork of yesterday and his other wounds. Somewhere amongst this the nurse managed to take him off ventilation and put him back on to CPAP. He was only on this for a couple of hours and was coping so well that they then put him on to low-flow oxygen.

Sam was surprisingly relaxed and settled inspite of being poked and prodded numerous times, covered in jelly for the ultrasound and having bloods taken. He became unsettled as I was about to leave, so I got to hold him for about 20 mins and he did settle a little.

I found it a hard day - post-op is always hard for me. Although the surgery yesterday was a good result and he coped well with the surgery, the fragile state of his major organs is a constant concern. And there just doesn't seem to be space to breath and celebrate any good steps as there is always another ongoing serious concern that they are addressing. We have always known it will be tough, and at the 7 week mark it is just plain tough. I feel relieved when he survives another operation, but still sad for him as the reality is that each surgery is not to correct a problem (his heart operation was the only op that was), but simply to manage his condition better. Today the tears flowed as I sat in the background and listened to the many discussions and as I looked at our darling with wires and bags hanging out and off him. I feel so helpless, yet am so glad to be with him as when Sam gets upset he responds to our voices and touch. I guess I want to share this as I am muddling through and I have my down days and today has been one of them. So I am still peaceful and sad and frustrated and hopeful - it can all co-exist and God knows that and sustains us.

Actually there are times I know real joy - that's when I just savour the moment and am holding Sam or washing him or just gazing at him....

So today I learned afresh about my inability to be strong or hopeful or joyful on my own.... I leave you with some great verses my friend reminded me of (thanks Carol!). “At that time we were completely overwhelmed, the burden was more than we could bear, in fact we told ourselves that this was the end. Yet we believe now that we had this experience of coming to the end of our tether that we might learn to trust, not in ourselves, but in God who can raise the dead” (2 Corinthians 1:8-9 PH).

Sleep well

X Shirley