Three Weeks Later

Well it's been three weeks now, and we still don't know when we'll be coming home permanantly. We've been enjoying afternoon LOA's which help us to keep our sanity, even if it's just for a few hours each day.

James recuperated quickly from the bronchoscopy. We had thought that this would set him back, but by Saturday morning he was off oxygen again and back to what is now considered normal. As usual, over the weekend nothing gets done, so we didn't get any answers on what to do with regards to feeding James or where to go from here. We stuck with our decision not to feed him through the night, although Saturday night we did feed him until midnight. We seen that he deSATed before midnight as well as several time throughout the night. He just needed to be repositioned and then was okay again. Sunday night we stopped his feeds two hours before he went to sleep, as it is normally recommended that people with reflux do not eat 2-3 hours before sleeping. He SATed at 95% the entire night. We will be trying this again tonight to see if it's concidence. As well we are happy to see that repositioning him now works instead of having to put him back on oxygen. We have watched him to see if he can figure out on his own to roll over, but so far no luck in that area. This still makes us a bit leary about what to do at home as I can't always hear by his breathing that he's deSATing. We have advised that we would like to purchase a monitor but are still waiting for quotes ... nevermind getting the actual machine, which takes a couple weeks to come in.

Since James was doing well and nothing happens on the weekends he was able to escape earlier then normal for an LOA on Sunday and was home for lunch ... what a nice change!!

Today we tackled the Team on the feeding issues, but didn't really get the help we expected. The doctors basically said that we could look at trying to get all his feed into him during the 12 hours we have that he's awake during the day. She also stated that kids adjust, he would get used to be hooked up all day. Let's be realistic here ... James really functions like a typical two year old, he is not delayed, he is not tied down to other medical equipment ... when disconnected from his feeds nobody would know there is anything wrong with him. If there were no other options we would resign to this and work with it ... but other options are available.

We know our choices are to put him on domperidone or to go to a GJ tube. Domperidone is a medication that increases the movement of the digestive system, therefore making foods go through you system faster and keeping the contents in your stomach low so they can't come back up. This is used in combination with Losec which keeps the acid levels down in the stomach. James' system already works rather quickly, as we often see food go through him in a couple hours, so I'm not sure how much more effective this would be. As well ... you need to trial this for a few months, see how he handles it and how his lungs are doing to gage if it's working. So if it doesn't work we'll know because his lungs will fill up again. I'm not so sure this is the answer.

So that leaves us with the GJ Tube. This is similar to a G-tube. The G tube is placed in the stomach and the GJ Tube goes into the small bowel (jejunum). No further surgery is need to change to a GJ tube. They use the same hole as his current G-tube but change the tube so that it has an extension inside which they guide into place in Radiology ... as long as he cooperates, unsedated. This has to be done each and everytime a new tube is needed. GJ tubes tend to block up easier as they are smaller tubes so more care needs to be taken to flush the line and keep it clean. They also tend to come out a bit easier the G-tubes. Since you are feeding directly into the intestine instead of the stomach you can only use continous feeds as the intestines cannot handle a large volume at one time ... we would have to start over to see how fast he can handle these feeds and how many hours he can have tube free each day.

Since I didn't get a straight answer out of the Team and their response was somewhat unrealistic I waited to talk to our Dietician. We discussed our options and she felt that we had nothing to lose by trying the GJ tube ... if it doesn't work we just pull it out and put a G tube back in. At this time we know that James' nutrition levels came up to normal levels once we put him on his full daily formula requirement, so we cannot afford to lose hours and feed and need to get the maximum amount in him each day. This cannot be done in the hours he is awake, and she agreed that it was unrealist to expect James to stay hooked up all day. She consulted with the Team and they are in the process of arranging the GJ tube, hopefully soon.

The Team also advised us that intitial tests coming back from the bronchoscopy indicate that he has a bacterial infection again. They will wait until the Lung Specialist is in tomorrow to decide whether to treat with more antibiotics or to watch clinically and see how he handles it. The Team also advised us that the CT Scan shoes that James' lungs look worse now then they did at the end of April on his last CT Scan. It is hard to say if this is because he's been ill or because of his unlying lung issues. The CT Scan also suggests that James does have what looks like PAP (Pulmonary Alveolar Proteinosis) but they will not know until we get the special tests back from the bronchoscopy, which will likely take a couple weeks.

I also got a chance to view the Swallow Video Study today. We didn't really determine much from this test. We did not see anything go into his lungs (actually I couldn't really tell much of anything from the video/pictures, gotta have a good eye to read those). James' swallowing technique is not quite "normal" but not really considered "abnormal" either. For the time being we will have to thicken James' liquids to prevent him from coughing, gagging and dropping his SATs, as times goes we can make it less thick and see how he handles it. The question is, why did he suddenly start coughing and gagging when drinking? we never had the problem before. Just another James puzzle.