Not Today ... and Happy Birthday Dear!

So you're all waiting for the update ... here it's goes:

The never-ending story. Things never seem to work out as planned, we should know better by now. We did somewhat expect that they might not be able to do it today, as it all hinged on getting OR time after a weekend, something that at times can be difficult. In the end it was not OR that was the problem, they had a spot for us later this afternoon, it was ICU that was full and could not provide a bed for afterwards. I guess part of us just tried to ignore the possibility it wouldn’t happen, so it hasn’t gone over easy that we have to wait.

Waiting at this time does not mean a day either. Part of the reason there was such a rush to get us here and get this done is because the majority of the Respiratory Doctors are leaving for an important conference tomorrow and won’t be back until next Tuesday (I imagine they themselves will be back before that, but it being a long weekend …). That being said, they are now looking at the earliest possible date being next Tuesday, October 9. And you can well imagine how that will work out if they are all just coming back after being gone a week. Of course there are some Respiratory doctors still left at the hospital, but the issues comes in the fact that not just anyone will tackle this procedure. It being a delicate and risky procedure it needs to be someone with a lot of experience in Bronchoscopies. There were two doctors willing to do it, our doctor and the head doctor, who are both going to the conference. Our doctor came to see us this morning and advised that there is one other doctor who is experienced with lung transplants and bronchoscopies that just arrived back from vacation, who might be willing to do it while she is gone. We will find out by the end of today, otherwise we have to wait.

It’s funny how what was considered a high priority case can all of sudden be put off for another week. Once again we’re involved in hospital politics. It seems they have tried what they can tho, as they even looked into getting an ICU bed at McMaster, but McMaster was also full. They actually do not expect he will need the ICU bed, but due to the procedure it would be foolish of them to go forward without having it available. Our biggest concern is that two weeks ago James required 0.5L oxygen, one week ago 1.5L and now often 2.5L … what will another week bring.

James is not able to go home. He has been relatively stable the last few days, but his oxygen requirements have increase drastically in the last couple weeks. We also believe part of the reason he’s a bit more stable is because he isn’t doing anything anymore. He spends all day sitting in his bed - mostly watching TV, sometimes playing with a truck or car, and occasionally reading a book. The few times he has gotten out of bed, for a bath or to play on my bed have made his SATs drop or he vomited. This morning he got upset because he couldn’t have what he wanted and immediately he deSATed and his monitor started beeping off, which in turn brings a nurse to the room … talk about a good way to get what you want!! (One doctor did say we would be going home, but as much as I would like to I think we would just end up back in Emerge within a day or two.)

They have said that he may be able to get some passes if his requirements stay stable, possibility an overnight pass for Thanksgiving. Even if he remains stable they don’t want to lose the bed, so he will only be able to go home for short periods. Considering the distance and the hassle that comes with this (we are not well equipped to administer this much oxygen at home, never mind the fact that our tank is currently empty because we knew we wouldn’t be home for a bit), I’m not sure how much we’ll do this. We’ll probably take the overnight pass, but not the shorter passes.

We are also going to try a new nebulizer (in the picture you can see the mouth piece that James is currently using, we use a different compressor machine, but same basic idea) for doing James’ treatment. The CT Scan showed that the center of his lungs cleared, but the peripheral parts did not. They are hoping this new nebulizer (basically looks the same, it's the parts inside that are different), which makes the droplets smaller then the one we had will reach the peripheral parts. The nebulizer they gave me was the sample they had in the lab, it is not released in Canada and is only being used in German at this time. It has a nice big sticker on it NOT FOR HUMAN USE. He told me not to start using it until we got home … more hospital politics.

So here we sit for another week or two. Previously we had wanted a situation where the kids would be home when James was in hospital so that our household continued to run somewhat “normal”, but in the past weeks Rob has already fallen so far behind in his school work while trying to help around the house that now we feel it’s better that the kids are gone and he just has quiet to focus on the school work when he has a chance.

All rooms are private rooms here and that makes our stays much nicer and more endurable. Thankfully I have a laptop that I borrowed which helps me to keep my sanity. I took some photo albums along which I am only a few years behind on and am slowing working on getting them caught up. Surprisingly I can actually say that I might feel well rested by time we get home, or at least well rested by time he has his procedure. James has been doing better here at nights (can this also be attributed to the less activity during the day?), which means I’m not getting up every hour to tend to him and can actually get several hours of sleep at a time.

If anyone decides to come for a visit, please call first as I am not sure if or when we might go home for a bit. Also, if you’re from our area, maybe check with Rob if there is anything that I need brought up since he will not be coming to visit again until the weekend. So far I think we’re good, but you never know what I might think of.

And as some of you have already commented on this, I figure I’ll take a second to as well. Today is Rob’s birthday … congratulations dear hubby on another year!!! Looks like we’re going to have to cancel our plans for tonight and celebrate another day!!