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.