Busy Days

Wednesday, November 7, 2007 (for some reason this is registering as Nov 8, when it's only the 7th)

Where to start?

The last couple days have been unbelievably busy. It seemed everytime we turned around there was a new doctor, new idea, new procedure. The advantage of these days is that they do not seem near as long as just sitting in a chair, and so it's much easier to stay awake that way.

The basic rundown. On Monday they put a new ventilating tube in since they will not be extubating him anytime soon. The original tube went through his mouth and the new one goes through his nose. We're told this should be more comfortable. Neither look comfortable, but at least he can close his mouth now and keep it a bit moist.

Monday was the turning point where they stopped talking on a day to day basis and started talking more long term, admitting that he wouldn't be extubated anytime soon and that certain things had to be done first, the biggest being an Open Lung Biopsy.

They did an ultrasound of his abdomen area to make sure that they are not missing anything with regards to an infection or growths in that area that could be causing his fevers. Everything came back normal on that, except for the enlarged liver, which we already knew he had. No comments were made about an odd shaped stomach which the GI doctor seen when doing the endoscopy.

Yesterday he had a CT Scan done to prepare for the biopsy. The scan did not show anything new, just more of the same stuff. They will use this to determine the best area to take tissue from during the biopsy. The general surgeon said he thought they could do the biopsy thoroscopically by making three small incision and using small tubes to view and cut. This is much better and quicker healing then having to actual cut open his entire side.

The lab results of the fluid that came from James' lungs discovered a mild fungi in his lungs. This is not uncommon with people who have immune problems which James is said to have since his macrophages (amazing cells which literally attack foreign particles) don't function properly. Because James is ventilated they are able to do tiny (or what would be considered normal) lavages to evaluate the fluid in his lungs on a more regular basis. They are waiting for the results of the lavage they did yesterday to compare and decide whether to treat this fungi since it is showing up so mildly.

James fevers are more stable now. He has only been getting mild ones which we are able to control by medication. Whether this is because of the antibiotics or simply because his lungs have had a chance to settle down after being disturbed so badly we do not know. He has been on the antibiotics long enough that if the fevers came for the bacteria in his lungs then they should have been completely gone by now. Since they have been reduced it's possible the bacteria was creating greater fevers, but still is not the underlying cause of the fevers.

They have stopped the GM-CSF treatment feeling that this may be hindering more then helping James. GM-CSF is shown to be more effective on mild cases, and James' case is definitely not mild.

The previous discussion about lowering the cholestrol levels are on hold. The scientist had not found any evidence that this works and they do not want to start any new treatments until after they receive the results of the biopsy. We understood this to be a method of turning down the tap on the surfactant discussion. Further reading we have done shows that this could be more in line with another rare problem with the transportation of lipids (which cholestrol is) causing lipids to be "dumped" into the lungs. To build on the previous analogy of the being in the tub, this would amount to someone sneaking a garden hose into the tub, and no matter how low you turn the water down, it water level will still rise.

We still have our moments with staff, but never as bad as the one night. You can tell that we have been labelled as interferring parents and this gets past down from one nurse to the next. Thankfully they decided to move James back into isolation, (why the change of heart we don't know and really don't care). The care we received in the ward room was not one-on-one care as should be in ICU. Never mind that fact that we rather not see the nurses putting more priority in socializing and watching the basketball game on TV than their patient. At least in isolation when they leave the room I have no idea if they're doing work or personal things while gone (okay I do a bit as I can see them surfing the net etc, but even so they are better tuned to their alarms then in a noisy ward room). Pretty soon we should be through the shift of nurses we had to deal with in the ward room and hopefully have better luck with the next shift. The big thing with ICU is that they are used to dealing with the emergency at hand, which in James' case is ventilation, and then they send you off to the upstairs wards to deal with the actual medical issues. But James is not going anywhere soon and so they have to deal with the issues also. It is quite obvious that some staff are not used to parents taking part in their childs care, and see our involvement as an intrusion into their terrain. Their characters reak of insecurity. Why is it that on the upstair ward you can have say but suddenly in ICU you just have to sit by and hold your childs hand while they make decisions not always fully taking in the situation or the history?? We are glad to say that not all staff are like that, and can thank one nurse in particular for including us in the discussion when the Dr.'s did their rounds. She valued our role, and often jokingly said when we changed his diaper, or gave him his oral medication: "You're taking some of my salary"

As you may have realized we lost our room on the Ward, this happened on Monday. Thankfully we have been able to get a parent room the last couple nights. This goes on a day to day basis. Each morning we ask for our name to be put on the list and then around 7pm you can go to find out if you may stay or not. This makes it rather hard to settle in, but at least we have a quiet place to sleep and it's still better then living out of a locker (a small locker at that). We've been in touch with a social worker who helped to get us on the short list at the Ronald MacDonald house, each day we call to see if there is room available, they tell you to call as many time as you want throughout the day to keep checking ... and this just reminded me to call .... wow, that was fast, they have a room for us. We have not been there yet, but it's about a 15 minutes walk from here. We were told that it much like a regular home, we have our own room and bathroom and share the kitchen, laundry area etc. We each get our space for storing food and we can do our own cooking, as well they say it's not uncommon for people to come in and do cooking for the residents. Once we have a room it is ours until we need to leave. So we will have to pack up again and go settle in there this afternoon. It will be nice to have a place to settle into, even if it's a bit further from the hospital and makes it harder to switch at any hour so that James has one of us with him almost all of the time ... especially considering he has no concept of day and night anymore.