The Rollercoaster continues

Samuel is 5 weeks old today. At the start of the week we didn't think that he would still be with us today .... he was so gravely ill .... and then he surprised us all and has gradually improved since Tuesday.

His distended abdomen has always been a serious problem, not just the damaged internal organs, but the continuing distention affecting his breathing as his lungs were squashed up by his diaphram. Now his kidneys are draining (albeit it directly into individual drains) his stomach is soft and has reduced significantly giving space for his lungs to better inflate. Yesterday the Drs felt that Samuel was ready to come off ventilation and on to 'low-flow' oxygen, but agreed to re-ventilate if he wasn't coping. You could tell Samuel was relieved to get the tube out of his throat and nose, as he had been irritated and trying to pull it out over night. He was on low-flow for 10 hours, but then started to tire and was put on CPAP to give more support to his lungs. His creatinine levels continue to fall, from a peak of 198 on Tuesday, down to 84 yesterday, with normal range being 20 - 60, so we wait for his blood results late morning to see if they've improved further. His haemoglobin levels have remained in the normal range since Wednesday and has not required any further blood transfusions, which confirms that he is no longer bleeding through his kidney. His vesicostomy (bladder drain) has prolapsed significantly, but this was not unexpected due to the size of his bladder. His morphine has been gradually reduced to enable his breathing to improve, which also means he is awake and alert for long periods. We have enjoyed more visual interaction with him as he is able to make eye contact with us and look around. Yesterday he had individual cuddles with Jas, Candace and Shirley! He has been re-started on breast milk 1ml

every 4 hours.

So the roller-coaster continues on. We didn't choose to get on this ride (I would have preferred the merry-go-round!) and we don't operate the controls to stop it and get off - at times I have thought I can't cope anymore but we don't have the choice to get off - we must finish the ride, and it will continue with the controls firmly in God's hands. The anxiety over the anticipation of the next downward loop at times can overwhelm me and find myself not enjoying the exhiliration of the top of the loop.... and I so don't want to miss out on the treasured moments of enjoying Samuel when he is well because I am guarding my heart from the heartache at the bottom. I have to discipline my mind to God's words of wisdom, 'don't worry about tomorrow, for today has enough concerns of its own'. We are learning to enjoy each hour, each day, as we are finding out that tomorrow will come with its own twists and turns whether we worry or not.... and I'm learning when I worry, I miss out on the joy of today.

Alison, another sister, arrived yesterday and it has been such a lovely distraction and motivator to have time with family. It is such an encouragement that they have come a long way to be with us. We have had 'normal' times of just yarning and laughing and existing outside this world of waiting for blood results and where words finish in 'ostomy'!.

We will try to spend more time with the girls this weekend, as Samuel is no longer as critical and time away from the hospital will be good for us too.

With love and appreciation for your love for Samuel.

Shirley