No Further Ahead

So we awoke at 4am, left at 5:20 am, arrived at 6:30 am, got to Emerg by 7am (had to do James' treatment first), had a bed in Emerg by 7:20am, had blood work at 10am, sat around until 12:30pm when we chatted with our doctor, had an x-ray done at 1:30pm and that's pretty much the sum of things.

There are so many emergencies that need a CT Scan today that we're not further ahead, unless your dying you won't get one today. We did get a bed though, we're waiting for a patient to be discharged so we can be moved to our room.

Although nothing has really changed the doctors are still very busy and likely we will be busy later today or tomorrow. The CT is now in the works for tomorrow and all further plans hinge on the results on this scan. Todays blood work looking at James' the blood gas levels did show sugnificant lung disease/damage. Even though they cannot get the CT Scan done today they are still working on getting everything together. We will have consultations with the anesthesis and genetic team in order to have everything prepared if we need to proceed. At this point they are aiming to have the Lavage done on Monday if it is necessary. But once again it's the battle of hospital politics as they will need OR time and a bed in ICU. They cannot book any of these until we have results and have made a decision.

We did have a chance to discuss the procedure. Our doctor has been working on gathering information and had us scheduled for the 3rd week of October had James' health not deteriorated. I have previously talked about a Whole Lung Lavage (WLL) (here and here), this is the procedure used for adults, but it is impossible to do on children under the age of 8 because of the size of their lungs and vocal box. They have researched different ways that they can do the procedure for James and have decided to do what would almost be called a Partial Lung Lavage. When they do a WLL they block off one lung and continue to feed it O2 so it can do all the lung worked needed in the body and proceed to clean the other lung out with saline water. They pour a litre at a time into the lung and then drain it out again, doing this about 20 times. This gets at the entire lung at the same time. Unfortunately with young children they cannot put this larger special tube down their throat in order to block off one lung and at the same time access the other lung. There are several different attempts that have been made on the one they feel will be our best chance is to use somewhat of the same concept but because they have to use different smaller tubing - the same as they use when doing a bronchoscopy (also explained here) (which James has had done a couple times already) - they will only be able to put small amounts of saline water in at a time and cannot do the whole lung this way, but instead have to slowly focus on each area. This means the procedure will take much longer. It has been reported to be effective with some and not with others. All we can do is try it and find out. The only good side to this procedure is that it will be somewhat less risky then a WLL, but it doesn't change the fact that while the clean the bad stuff out of his lungs they will also be cleaning the good stuff out and this can mean chances of lung collapse or failure. As mentioned before, they would do one lung, allow him to recupperate for a couple weeks and then do the other lung.

We are not at the end of the road if this does not work, they have learned about several different procedures and the last option would be to put his body on bypass, let the machines do the heart and lung work and then proceed to cleaning out the lungs. This is a last resort as it carries very high risks.

So at this point we have no further idea of what lies ahead of us. We continue to wait for the CT Scan which will help to guide us in the right direction. Since the Family Resource Room (where there is internet access) closes at 3pm that means that if anything changes I will not be able to give a further update until tomorrow. Thank you all for your continued thoughts, prayers and support.