James' Current Health State

Okay, so I get the hint ... I haven't updated for a while!! :) Before someone else asks, I figured I better try post something ... and believe me I've tried several times since my last entry, but have not been given the opportunity.

James has been home from hospital for 2 months now and it seems with each passing week things seem more complicated and he requires more and more care. We wish that James appeared as well as his blood work showed (by the way I got the correct # for his LDH levels and it was 1537 ... so bit higher then we were orginally told, but still half what it was before), but each day leaves us more discouraged. We continue to pray that all this is short-term and necessary in order to get his lungs back in shape. More and more we get this deep down feeling that he needs to have the Whole Lung Lavage (WLL) in order for us to make any progress. But he has a great risk of not making it through this procedure and so we remind ourselves to be patient. It's a matter of weighing out how long to be patient, if we wait too long his health will deteriorate more and more and make the procedure that much more risky. We are in constant pray as to what to do and we covet your prayers as well.

We look forward to next Friday when we see the Lung Specialist again, although we are beginning to wonder if we'll make it to next Friday. James' vomitting episodes have returned, but worse then before. Previously he would vomit in the mornings when waking, sort of like clockwork. It's not so simple anymore as he can vomit at any point and time. He is a very bright 2 year old and knows when it's coming, he is even able to hold it until a bowl arrives. If you visit our house you will find ice cream buckets pretty much in all rooms .. so far he has never missed the bowl, for which I am so very thankful. Sometimes it's a coughing episode that sets him off, other times it's because he's crying to hard, or even laughing to hard, and then there are times where it just comes. The last four days he has vomitted at least twice a day, each time vomitting up a fair amount of the precious food we put into him. Already a few weeks ago we realized that James had really become skin and bones and now this is definitely not helping the sitatuion. The only good thing about the vomits is that usually afterwards he perks up and is much more chipper, but that's after sitting with him for an hour or two because he's miserable and feeling awful.

Along with the return of the vomitting episodes we have begun to see fevers more often, they come and go and tylenol actually seems to help (unlike in the past) but they are a sign of more troubles. At the same time James' colitis is acting up and it seems we are constantly changing his diapers ... never mind his poor sore little bum. Night sweating (or nap sweating :) is a symptom of PAP, but lately he's even sweating when awake. Usually several times a night James will deSAT, often we find him "moaning" when this happens. It took us a bit to realize that he's not really moaning ... it sounds like moaning but it's actually the way he's breathing ... thus causing him to deSAT. He's done this moaning for a long time at nights, but lately it's getting much worse and now we're even hearing it during the day (which usually means a vomit is coming, but sometimes it takes an hour or two to come). A cough during the middle of the night sends us running because we never know if it's going to result in a vomit, a deSAT or nothing. James' oxygen requirements continue to bounce all over the place, leaving us checking him often to see how he's doing. We so far see no rhyme or reason to these ups and downs, each time we begin to see a pattern it suddenly changes again.

It's not good to write when you're discouraged, as this blog shows. So let me try to be more positive. When not moaning or asking to sit with us James continues to be a cheerful and easy going child, excepting everything as it is put before him. I stand in awe as I watch how well he tolerates everything, he truly amazes us. He is a child that is so easy to love for even when sick he is cooperative, it's like he truly understand that all that we do to him is for his good and not because we want to torture him. The simple things in life thrill him and make us appreciate all that we have.

These past weeks I have spent a lot of time on my butt, either sitting with Matthew or James, but I've learned to relax and not worry about the disasterous state my house is in or the work that didn't get done for the day because I know those moments are things I will never forget. Matthew is growing so fast and we don't know what the future holds for James, life would be absolutely miserable if I were alway uptight about that things that are not getting done. I've learn to be thankful for the few basic chores that get done each day. Not to say there aren't moments where I get so frustrate because there is so much to do and no time. Often we are up late at night because it's the only child-free time we have ... and often I don't know where to start because there is so much to be done ... (even a "normal" household can have these issues) ... it's learning not to let it get to me that has been the challenge. We continue to thank our Heavenly Father for each day He helps us get through, knowing that He is there helping us along the way, reminding ourselves that He does not set anything before us that we cannot handle and realizing that in order to handle these things we much seek and find our strength in Him alone.