Bronchoscopy and CT Scan

After a long morning of distracting James from food, at 1pm yesterday they were ready and came to get him for his Bronchoscopy and CT Scan. It doesn't matter what room it's done in ... he knows the site of trouble. One look at the room, all the people, the bed, the equipment and he started crying "no hurt, no hurt". I sat with him on the bed for a while while they finished getting everything ready as he continued to say "no hurt, no ow". Thankfully I could tell him it wouldn't hurt (at least not that part) because he already had his IV in and all they had to do is insert the med into the line. I held him until he dropped off and then watch as they tried to stabalize his sedation. After a bit the Lung Specialist dragged me out to sign some papers saying I didn't need to watch the detail ... probably scared that they would have a panicky parent on their hands since it was taking a bit to get him stable.

The bronchoscopy was completed in the PICU unit (technically now called PCCU - Pediatric Critical Care Unit ... altho everyone still refers to it as PICU). The Lung Specialist came after to say that he found a lot of mucas in his lungs as well as a "milky" substance. He did admit in the many bronchoscopies he's done he's never seen such a substance. Milk usually has a fatty look, but James' formula is not normal, so it could still be formula. The Specialist still hold that we're likely looking at aspiration, which we know we are, but all the normal tests have been sent out, as well as the special tests. Some will come back next week, some will take a couple weeks.

From the PICU Unit (for those of you who know the hospital, what used to be Ward 3B is now PICU) James had to travel down to the Radiology to have his CT Scan. We had a bit of time to wait, so I got to sit with James for a bit while we wait. This time I got to have a look at what he looks like ventilated ...and boy am I thankful we avoided that in ICU as it was not nice to look at, and I only had to for a short period. I think what made it look the worst is that he was sleeping with his eyes more then half open. They were surpised at how often they had to give him more propofol (sedation drug) to keep him from moving around. At one point he started swinging around, kicking and squirming, but settled upon finding my hand.

We have not received any results from the CT Scan yet, but should hear on that today. It's pretty ironic that the last time we needed these tests done we couldn't get them done on the same day due to having to move him while sedated ... and they only had to move him a couple rooms down that time ... here they took him half way across the hospital and down one floor ... talk about politics!! Regardless they both got done at the same time this time and I was able to stay in long enough this time to actually get some pictures, but had to leave because I am pregnant. It's also amazing the difference on what they allow when an inpatient versus an outpatient, normally you get to see them drift off and are quickly asked to leave, this time they didn't care whether I stayed or not ... only the pregnancy thing got in the way.

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After the CT Scan they kept him sedated until they got him back up to PICU and then slowly let the sedation wear off ... once again I was allowed to sit with him, whereas when an outpatient they do not let you in until they've taken all the tubes out and he's fully awake (and usually screaming for mom). He arrived in his room shortly after 6:30pm, on 75ml of oxygen, just a small puff, but still needed to keep his SATs up. While gone we also lost our lovely private room with a bathroom ...and are now stuck in the smaller size semi's with no bathroom :( still in the step-down unit. I was surprised we hung onto our nice room so long so I shouldn't complain, but it really sucks downsizing, talk about absolutely no space in our new room ... never mind how many times I go to the bathroom in a day :) and my cot doesn't fit either :( oh, I want to go home!!

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The night went well, James stayed on oxygen and only dropped his SATs once, likely due to how he was sleeping as once he rolled over he was good again. We ran into a bit of a dilema that we should have asked about before the procedure as it was now evening and the weekend and no doctors around ... should we feed him at night?

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We had just cleaned out his lungs ... we believe he aspirates, especially at night. We now have clean lungs, it would not be wise to start refilling them by feeding him at night. On top of that he had not had his Losec (reflux) med that day due to sedation. But ... we could not withhold his feeds as he is not allowed to go without protein for more then 24 hours. The nurse called the resident who was of no help, saying that the bronchoscopy team said to carry on feeds as normal ... not like the had ever asked how we normally feed him. When the RT (Respitory Therapist) came around he agreed with us that it was not wise to feed him until we got things sort out ... but not being able to make that decision he did say that 12 hours of feed should not do much damage and then to make sure we get it sorted out in the morning ... as well, if his SATs dropped at night to stop the feeds. Considering he was on oxygen I doubted we'd see him deSATing all that much ... which we didn't.

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Today we are feeding him most of the day (short break at naptime) and then we will not feed him at night. This was just our decision, when I left at lunch time the Team had not come back to say what they thought would be best, but the Resident had been in earlier and agreed with our concern, saying the Team would review it. It looks like we'll be heading for a GJ tube, it's just a matter of how quickly this can be done. And then we'll have to see how he tolerates it.