Please Pray

Early today I thought I should update the blog since it has been over a week, but there wasn't really much to write about. Our biggest news was that after 7 months of not gaining any weight last week when I took James in he weighed 11kg (24lbs 4oz).

For 7 months James weighed 10.75 kg (23lbs 11oz), with a few variations, but sticking in that area. In one week he went from 10.75 kg to 11kg. This was not without lots of hard work, for us and James. We increased his daily requirement by 10%, but the biggest reason for this increase finally was that we were making sure he was actually getting the correct volume each day ... this after two months of using a pump that was completely inaccurate. James is once again hooked up almost 24 hours of the day in order to get his daily requirements. He has no time off during the day and at night he's finally disconnected when the last amount of the pre-measured volume is in him. Since he does not tolerate nighttime feeds well at all, this has meant sleepless nights as we turn the pump on and off, giving him breaks whenever he starts moaning and once he stops moaning starting it up again so we can get a bit more into him before he starts moaning again. We would love to not feed him at night, but in only a few days of getting the correct volume into him we seen little round cheeks and a healthier looking face ... and this time not because of prednisone. What a lovely and encouraging sight. As we look at the rest of him we are reminded that we have a long ways to go, as he still is far below the 5th percentile on the charts and his scrawny little body shows it. Although we're happy with this improvement we realize that we need to see it stay steadily (and hopefully increase) there before we'll be really excited.

Our lives have made a sudden turn again. We had thought that we would be more prepared for the next hospitalization, but it does not seem that James functions the way we would like. You would think we would learn....

Today I called Toronto to review with them how James is currently doing. A little over a week ago we visited the office and reported that he's usually on 0.5 to 1L of oxygen. In the last week he has jumped to 1-2L, often requiring 1.5 litres. We wondered at what point do we need to stop just maintaining him and start taking a closer look at what's going on. James' temperature remains higher then normal, with occasional, but not consistent fevers. His heart rate is more often in the 150's (normal is 70-110, for James normal is around 140) and he continues to vomit daily, usually 2-3 times. Personality wise James is still James, he has his low times and once he gets through it (usually after a vomit) he's happy and chipper, enjoying life as it has been set before him ... such a loveable child!!

The response we received from Toronto was that it's time to bring him in. They no longer want to wait the three months to evaluate if the treatment is working. We are not really sure what their plan is, but they will do some testing, including a CT Scan and from there a decision will have to be made, but the feeling is we'll have to prepare for a Whole Lung Lavage (WLL). Since they are admitting him and not doing this as outpatient I get the impression that if this is needed, they will proceed with it immediately.

We are waiting to here back about when to bring him in. They originally said tomorrow, but upon realizing how hectic this would be for us they said likely the next day. Regardless we have to be prepared to go once a bed is available. And so I must go prepare.

Please pray for us as we will likely be encountered with decisions in the next few days. Pray for the doctors and the work that they are doing. Pray for James that he may continue to endure all that is set before him and if it is His will may return home a healthier child. Pray that we may remember to put our full faith and trust in the Lord and not in the doctors, but see them only as instruments set before us by the Lord. Most of all pray that we may accept whatever happens as being the Lord's will.