Monday, November 16, 2009

Plod plod plod....

Samuel had a quiet weekend, where his oxygen requirement was monitored closely, but otherwise nothing much to report. He is still slightly wheezy and is on 1.5 litres of oxygen, but he was on 0.5 at home, so they will gradually reduce his oxygen and see how he copes with it.

Today he went for a chest X-ray to see if he may have a secondary infection - we will hear from the Dr on their rounds tomorrow. He also had a dye test done on his stomach in radiology. The Dr injected dye into his GJ to check that the fluid was still getting to where it should and the tube hadn't moved since it was put in 3 weeks ago. This was done as Samuel has had really bad reflux and the fluid is clear green and a pH reading of 1 or 2. This is extremely acidic, and normally would be about 5 or 6. So although Samuel has been overall quite well, he will wake suddenly screaming and throwing back his head in pain. This can go on for 5 or 10 minutes until he settles. So one thought was that maybe the feeding tube had moved and was causing him problems, but the test showed that wasn't the case. It may be that a change in some medicine recently is the culprit.

Anyhow we are desperate to get home.... it's nearly 2 weeks since he was readmitted and frankly I'm so over the solo parent thing. Francis and I are tired of catching up by phone and are hoping that Sam will be well enough to get home sometime this week. So we continue to pray that his lungs get stronger and that his stomach problems can be resolved so that he is comfortable. Francis has been busy doing the MAF clearance/port authority paperwork for our belongings that docked today from Thailand. So this week he will be busy running around sorting that out.

Yesterday the 5 of us took our first car ride to see friends - we all managed to squeeze in, with the oxygen bottle wedged under the front seat. It felt so normal to be out for the afternoon together and was all the harder dropping Sam & Francis back to hospital and the girls and I returning home alone. It did take both of us, plus about 10 minutes to get him and his gear in and out of the car, but it was worth it!

But, we know that we will be 'frequent fliers' at Starship, so we have to deal with the fact that he needs the extra medial care at times and we have to work around him. That's not so easy for the girls to swallow......

Anyways, time for bed.


Anonymous said...

Hi Shirley. I wish I lived closer so I could do the aunty thing a bit more so you and Francis could do the mum/dad together more.Glad that you've had a little bit of family time - it's a mission getting organised for travel with a wee one let alone with all the other luggage Samuel needs. Well done.
Remember that God is right there with you in the plodding, hard as it is. Lots of Love and blessings

Samantha Sutherland said...

I know - it's really crap isn't it being solo parents. I used to miss Hamish so much and would get to hospital at 7am so we could spend an hour together before he went off to work. This meant that Nanna would get Jake ready for school but since he usually ended up in my bed in the night we had spent some time cuddling.

Jake sometimes wouldn't see his dad from weekend to weekend since we did shift work at the hospital. I used to cry for Jake but we have all coped and he is not damaged by it as he has had loving nurturing from his grandparents since we lived with them while in hospital. I missed my home thought but it never felt like home without us all in it.

I'm not trying to make you depressed by the way! It's just that you will get through it - you are a great team, and it won't be forever, things will change.Try not to think too in depth about it all or you will do your head in and your kids will be resiliant any way the way kids are!

Nicholls's said...

Each time our computer comes on - up pops Samuel and we are reminded how we should always have an attitude of gratitude that we can do the everyday things of life that we take for granted - a trip anywhere is a major undertaking for you guys but it is something 'we just do'. We pray that Sam will soon be home again so you can all be under one roof and that there won't be too many 'frequent flyer' visits to Starship. Praying for Aria too. M&S

tau said...

hey beautiful!
we still thinking of you, praying for you all and sending big loves to you x x x x x