Decisions

Yesterday was a day of much thought and prayer to come up with the most appropriate and ideal decisions and treatment. We've sort of been left stuck between a rock and a hard place, but after much evaluation seem to have come to some sort of decision.

After the Team Meeting the ball was put forward to start organizing things. The first thing they found was that they were not able to do an inpatient tranfer to Toronto as they had hoped. However we were able to get a outpatient appointment which is tenatively for next Thursday, but not yet written in stone. The advantage of an inpatient transfer would be that James' would actually become an inpatient in Toronto and would probably stay 1-2 days. At that time he would see the Lung Specialist and the Genetic Doctor. Then if they felt it would be beneficial to see any other doctors that would all be done at the same time ... and then he would be sent back to Mac for the different doctors to work together. Since this is not possible we are thankful that they were able to get us an outpatient appointment with the most important doctor, the Lung Specialist, so quickly. This appointment would be no different then a regular specialist consultation.

Surgery came to see us after the Team Meeting to inform us that a Fundoplication would not be able to be done immediately as they do not feel it qualifies for the add-on list. Right now they are booking into September. Their solution to the wait was to put another J tube in to tie us over in the meantime. Our first reaction was no way and so we sent them back to reevaluate their time line and also spoke with some of the other doctors ... but it seems there have been no beds in the hospital lately, many surgeries have had to be cancelled and so there is a major backlog of surgeries and this one just isn't important enough.

As we spend time evaluating this we realize that it may not be such a bad thing afterall. It would be great to have it done quickly, but we began to question the what if's ... mostly ... what if this surgery isn't really the answer. It is irreversible and sometimes has some irreversible side effects ... that would be lifelong. When tighting the esophagus you prevent food from coming up ... which can also prevent you from being able to burp and allow simple air out, causing bloating and other major discomforts. As well, if the esophagus is too tight people can have trouble swallowing. Those we have spoken to say they haven't seen these side effects in children and it may be more adult related, but regardless it's a risk.

We know that James has reflux, treatment of Losec helped this reflux, but we do not know that this is the biggest problem he has. What if we are trying to maximum the reflux treatment when it is really only a minimal problema nd something else is doing the damage? The endoscopy showed James only has mild esophagitis (burning of the esophagis) which suggest only mild reflux. The bronchoscopy shows lipids (fats) in his lungs which suggest food is getting into them, but your body also normally has some lipids in the lungs ... so what if it's more because his body isn't able to process the lipids that are in there? We do not doubt James has reflux, we're just not sure it's the only or the biggest problem ... so we want to be careful before we do a irreversible surgery.

So our decision? We are going to make another attempt at the J tube. We struggle with this decision because we wonder how many J tubes we'd have to put in before he reached the surgery date. The only way they can put another J tube in is if they make sure this one is anchored properly. We are suppose to see a couple different people about this today to review the options. So far we are told that there are some with balloons as well they can actually stitch the tube down on the side of his stomach. No matter what solution they come up there we could still run into trouble as J tubes clog easier then G-tubes ... not to point out we don't even know if James' body will tolerate the J tube as he didn't have it in long enough last time to give us a clear indication ... but we won't know until we try.

On the bright side we feel that maybe it is wiser to go this route because we can better evaluate how James' lungs do with the J tube. If we put a J tube in and his lungs get no better, or worse, we also know that a Fundoplication is not going to help ... thus saving an unnecessary surgery. If we see great improvement or stability ... we will feel more confident about doing the surgery. It will buy us some time to make a more informed decision ... we just pray the tube will stay in this time ... and for a long time.

We're still waiting for the bronchoscopy results which really hold us up in many ways. They keep saying they should be in soon and this will really help ... if something comes of the results. We've asked to proceed with the J but at the same time question whether we need to wait for the bronchoscopy results just in case we get a positive result for PAP. If it comes back saying he has PAP we question whether a whole lung lavage will be needed immediately to get his lungs on track ... therefore another sedation ... and can we coordinate the two sedation. A whole lung lavage is a very thorough washing of the lungs, doing one lung at time and taking a couple hours for each one. They usually do one lung and then wait several days (until stable) to do the other ... not a minor procedure either. So ... we'll see what they come up with, but unfortunately we can't keep sitting and sitting here either ... yet if we leave we know it will take forever to get a bed back ...and with a baby due soon we need some things done sooner then later.

This means another weekend here and likely another week ...altho we've stopped speculating on time but take it one day at a time. Thankfully they say we can go home all day Saturday and Sunday and do not need to stick around for rounds and doctors since nothing gets done on the weekends. We will need to come back at nights because James continues to require oxygen at nights and we haven't gotten our own for at home yet.

Just to clear up, since several people have asked. We qualify for home oxygen ... this is just the oxygen ... the monitor is not covered, we still have to purchase that and I believe we're also responsible for the "smaller" equipment (oxygen probes, nose prongs. etc). There is no way to get monitor coverage and very strict quidelines for oxygen coverage. The oxygen coverage is only valid for 3 months and then he will have to be retested again ... so we are waiting until we're sure we're discharge before getting it at home.