Another Day

We keep thinking we're at the end of all the rounds of test the doctors would like to perform, but it seems to be neverending list that keeps growing. The doctors continue to probe from all different angles in order to try narrow down and eliminate all possibilities of James' fevers and current condition.

We have not gotten the official word yet, but it appears they will be doing the lung biopsy tomorrow. His file has been marked that he cannot eat tomorrow morning, but there is no set time yet. Maybe we'll know better later on today.

Today we were introduced to the Immunology Department who is not carefully evaluating James immune system to make sure that it is fuction properly and not a problem in the equation. They are doing this by testing the B Cells and T Cells. These are the white cells that create antibodies to fight infections. They are hoping to see if James immune system is working up to par, or if this might explain the persistent fevers. Their tests require a wack of blood to be taken, not a good thing when James' hemoglobin levels are already low. If James' hemoglobin levels drop much lower they will need to do a blood transfusion, part of the blood work they order was also prep work for such a transfusion ... just in case.

After Immunology came by GI came by. They had been called back on the case becuase James' liver size has increased as well his LFT (Liver Function Test) results are high, indicating his liver is having troubles. They need to evaluate closer ... and how do they do that? You guessed it ... more bloodwork.

These are all on top of the fact that they changed the regular bloodwork from every 24 hours to every 12 hours. This change was made because James potassium levels are low, among other issues low potassium can put stress on the heart. At the rate we're going it's suprising he's lasted this long without a transfusion, and it definitely won't be surprising if he needs one after today ... even though the nurse is spacing out all the bloodwork, taking small amounts every couple hours to try prevent shocking his body.

James was suppose to have a calorimetry tests today, but when I left at noon it still had not been done. This was suppose to be done the day after he arrived in ICU, but they don't seem to be in any big hurry. This test helps them to evaluate what he needs to be fed, especially now when he does nothing all day long but lie there.

They restart James' g-tube feeds a couple days ago and we are very surprised that this is going quite well. He is only receiving 10ml/hr, but suprisingly his stomach is not extremely distended. We still need to vent him at times to ease some pressure, but he's doing pretty good.

Okay, I think that covers the main gists of the medical stuff. As many of you have probably figured out by now ... considering the fact that Rob has been here for over a week ... he has decided to drop most of his courses. He kept one course because it only requires him to be at school one day of the week and he was already done almost all the assignments, so it didn't make sense to drop it. For the time being Rob will continue to help with balancing the family life. When things settle down a bit he will consider his employment options. We settled into the Ronald MacDonald Home (RMH) last night, I will write more about that later, but we're happy with the arrangement and are considering whether it would work to have the girls stay with us ... this of course takes much evaluation since they are both in school. The RMH does have school for the children staying here, we're not sure yet if this is a option we want to take. We have to evaluate everything, also considering the high school bus the leaves this area (although we're not sure how close from here) and whether it is a reasonable way of getting the kids to school without completely wearing them out. Bringing the girls here would bring some of the family back together, but we have to consider how we'll get any sleep if we take that option. Sadly, no matter how we evaluate things we cannot fit Matthew into the picture at this time. We have now been apart from our little guy for 6 weeks. Our "lifestyle" is hardest on the girls who realize what is going on and are moved from one place to the next, but the harder part for me is not seeing my little Matthew grow up. At least I can talk to the girls everynight, and they don't change so drastically in a couple months, but Matthew is almost not my child anymore, he has settled into his home and has no idea that we are his parents. This is definitely hard for us to accept, but at the same time we take comfort in the fact that he is in good hands and doesn't know any different and is content where he is.

Staying at the RMH means that we have to spend more time apart from James. Since he cannot speak we have no idea how he is truly handling this, but when I arrived back today I seen little tears on the side of his face. I'm not sure if it's the fact that we were gone or that something happened while we were gone. He has been very sad all day, more sad then "normal". We hate leaving him as it's hard enough to stay on top of all that is going on as it is and we hate missing seeing the doctors etc (especially when it seems there are always new one showing up) and having no idea what decisions have been made. That being said I must get back to him.

Many of you have mentioned that pictures are nice to see. I have lots, but unfortunately have not been able to upload them since I have not been home for almost three weeks. When I finally brought the stuff here it somehow got lost in the packing when we moved out of the room ... hopefully soon.