Encouraging News

Last Thursday I arrived home to find a positive message left on our answering machine by James' Lung Specialist.

Last Monday I had taken James in for blood work before he went for his J tube change. The Specialist called to say that the blood work looked very positive and so she was wondering how James was actually doing clinically. In the blood work they evaluated whether is seems that James' body is having any sort of reaction or negative side effect from the treatment. This all came back looking fine and so they feel it safe to continue with the treatment.

The part of the blood work that they were most excited about was James' LDH (Lactic acid dehydrogenase) levels. This is an enzyme that is important in energy production in cells. LDH levels are monitored with PAP, these levels are often high when a person has PAP. LDH levels can be high for many reason and in many diseases and therefore do not give any sort of diagnosis, but are monitored once a diagnosis is made and treatment is being done. James' LDH levels were high already when we were trying to diagnois him last year and this is why they did a bone marrow biopsy as that time. After he was diagnosed with LPI these high levels seemed to have been forgotten ... until I started reading about PAP and a couple sites said how these levels were usually elevated.

So the phone message said James' LDH levels had dropped and they were happy with what they were seeing, at the same time they were hoping that my report would be just as positive. Unfortunately I was not able to call back with a very positive report, as clinically James seems to be going downhill. When James came home from Sick Kids he was on 1/8L oxygen. We had a short period where he was able to go without oxygen but then he once again required it 24 hours. Slowly his requirement went up to 1/4, next to 1/2 and now we're seeing him on 3/4L more often (and since Thursday when I called to give my report we've had to put him on 1L a few times).

As I mentioned in my last post James' vomitting had pretty much stopped, but as I evaluated my notes closely I came to see that as his vomitting amounts decrease his oxgyen requirements increased, and since the vomitting had stopped it increased even more. So although it was very difficult to watch him choke and gag each day, this did seem to be doing something good for him. Since I called on Thursday we've begun to see small vomitting episodes in the morning again ... but his oxygen requirements have not been better on those days.

The other not so positive things were the fact that we've been seeing a rise in his temperature lately. Occasionally in fever area, but usually hanging just below that area ... but stil higher then his norm. Along with this we're seeing his BPM (breath per minute) go up from 60 to the 70-80 area. James is basically housebound as even a short trip outside seems to deSAT him and once he deSATs we have to sock the oyxgen to him for the rest of the day.

So from our prespective the last weeks have been discouraging, yet the doctor comes with encouraging news. When looking at Jame's LDH levels in July he was 3700. For his age the normal woudl be between 500-900. She did not have the results in front of her when I called but she was pretty sure that they were below 1000. This is pretty much back into the normal range and this was why they were so excited and gave us a call. We like to see these discouraging times as temporary. One theory can be that the treatment is working but since it is loosening everything up it is making it difficult for him to breath at this time .... but with time it will improve again as we get rid of all that sits in his lungs. We really have no idea, it's all a guessing came. This is just a theory and unfortunately we have no idea and so we just keep working with the situation and praying and praying that indeed things will improve.

The higher oxygen requirements mean another change in our house as we will need to change the way we get our oxygen. On low amounts we can just use smaller more portable tanks, but now we are going thru far too many and need to get a larger non-portable tank or an actual machine that converts the oxygen (not sure how that works, we'll see). Of course we'll still need the small tanks for when we go out etc, so we also have to continue to store these somewhere. We're left scratching our heads again wondering where we're gonna fit this change in our already congested house. We're often left wondering if it's time to move (as must as we rather not). We must be hitting the three year mark ... seems every three years we find ourselves dealing with this question.

I should just update on the G-tube situation. It's going well and we're glad we made the change. James continues to pick at foods. He is not eating much, but he's showing interest, trying foods, eating a few bites here and there ... all very postive after not touching a thing for two months. At this time we don't expect him to eat much as we are still "stretching" his stomach (not that we really ever expect him to eat much as he never did before either). After two months of not using his stomach it would have shrunk and so as we slowly increase the rate we feed him at we also increase his stomach size back to what it was. As we increase the rate we give him more time off the pump, which right now we mostly do at night so that his stomach is empty in the morning in case he vomits. As we suspected the vomitting is related to his lungs and was not due to the j-tube.