James

Well as I mentioned the appointments haven't stopped just because I'd like some extra rest. Thankfully some things have been done via phone, so I haven't had to go running all over the place.

On Monday I made an overdue call to the Chest Clinic in Toronto to discuss how James is doing. I had wanted to make the call last week as we were becoming concerned about his vomitting and increased oxygen needs. He seems to be getting worse instead of better. I was scared to call because I knew I myself was scheduled to be in hospital and I didn't want them to ask us to bring James back in and him be stuck in Toronto while I was in Hamilton.

James continues to vomit daily, sometimes bile, sometime phlegm. We're having a hard time determining what is causing this. We want to think that it's a good thing as we're loosening the phlegm and it's coming out of his lungs, but all the pieces of the puzzle don't fit together. He continues to tell us at times that his tummy hurts, he doesn't dwell on it much, but it's enough to make us wonder. Lately we've experienced where he moans and groans during the nights, sometimes waking, sometimes not. If we turn his feeds off then he stops moaning. The dietician has suggest that the j-tube could be blocking his intestines, therefore not allowing the bile to get through very well and the excess bile in his stomach is causing him to vomit. This along with his complaining makes us wonder about the whole j-tube. But at the same time, he has a phlemgy sounding cough with his vomits, and you can also question whether the coughing and heaving just causes him to eject whatevers in his stomach along with whatever he can get out of his lungs. On top of the vomitting we've experience occasional fevers. A treatment of tylenol and ibprophen and the fever is gone again, but we're left wondering what has brought these on. And then there's the fact that we're pretty much back to 24 hours of oxygen, sometimes requiring higher amounts then he used to.

After reviewing everything with the clinic nurse she discussed the situation with our Lung Specialist and called me back. They are a bit concerned that things are not going so well. They would like us to have James' J-tube checked for placement before they make any further decisions. We are suppose to go in on August 9 for a CT Scan and follow-up appointment to get a better idea of how James is doing. For now we need to rule out the j-tubes involvement in this situatin, if we can get the j-tube looked at before our they can make a better call on what to do.

The Lung Specialist has previously told us that the j-tube is not necessary as James does not have aspiration pneumonia. So we are left questioning whether it would just be easier to pull the j-tube and go back to g-tube. After all we went through to get this tube in we don't want to make a hasty decision and so we keep hashing it out but come up with no clear answer.

So that being said I had to chase after a few doctors to discuss the situation, but it seems no one wants to make a call on whether to leave it in or not ... almost wish he would decide to play car mechanic again and pull it out ... too bad this one is in so good! I really don't want to traumatize James with another test if unnecessary, but it seems this the route the doctors want to take. I am still waiting back for a call on when they want to do this j-tube study, which involvs putting a dye down the tube and then doing a series of x-rays. Seems it seems the final decision is going to be left up to us and we keep talking about pulling the tube, but don't really dare to.

Yesterday I took James to the ENT (Ears, Nose, Throat) Specialist. This was an appointment we should have gone to long ago. We had requested this referral in March after getting repeated results of fluid behind his ears. I called a couple weeks ago because we never got an appointment and found out the referral never made it to the ENT office. James no longer pulls on his ears and so I didn't know how necessary it was to bother with the whole thing again, but when they squeezed us in quickly I figured it was best just to take the appointment and get our foot in the door.

Here again I learned never to promise the child that there won't be any owees. He has become more and more afraid of doctors and goes into this trance of saying over and over "no hurt" when we get to a clinic or any sort of doctor related place. They had to clean the wax out of his ears. They use a vacuum to do this and said it did not hurt it was just very loud, but regardless they had to wrap him up so he would keep his arms and legs still and then they held his head still while they did it ... that's enough to traumatize the poor guy, never mind the actual noise in his ears. He received a toy boat for being a good boy and walks around proudly with this boat, takes it to bed with him, in the tub with him ... it's very cute ... and he'll point at his ears to remind us of how he got the boat.

At the end of the appointment it was determined that he still has fluid behind his left ear. The right has cleared up. They have put him on the list for tubes, which takes about six months. In the meantime he will have another checkup in 3 months to see if it clears up on it's own. If that is the case we just take him off the surgery list.