Saturday, May 23, 2009

Frustrations and General Crud

What an interesting last little while. For starters, I still hate EI and their inability to process an application even AFTER they have given themselves a 10 day grace period. Seriously...we are now on day 46 of the 28 day processing period. Fun, eh? I suppose different areas of the government will always remain a part of the government and I shouldn't expect overmuch with them. Side note, really interesting article that I think everyone should read here. There is a lot about this proposed HST that most people are completely unaware the fact that services we don't currently pay the PST on (i.e. gas, home heating fuel, water, hydro, used cars, government and city services, real estate fees and many other professional services) will now have the 8% PST tacked on by default under the 13% HST. Yes, this bothers me. I am not one to discuss politics or the government, as I honestly believe that they are all as bad as one another (seriously, if I am raising my children not to lie and steal and cheat, why the hell would I support any entity or group of persons who have such a long history of lying, stealing and cheating - "better health care"; "shorter wait times"; "more support for families" - any of these ring a bell??), but I think that everyone should be made aware of these goings on, as we do have a tendency to bend over and take it when the government announces some new tax, or any sort of cut to services, because we feel we can't do anything to change it.

Sorry, now that that rant is over, let's move on to nicer things (and some not so nice things). In the world of Riley, this has been one of the more frustrating weeks. Our little man is a lazy boy. I fully acknowledge that. If you read this blog regularly, you know that he was listed as being biphasic dependent for ages before our primary nurse decided that she didn't care if he sent his saturation bells and whistles off, he could handle it, and was being lazy and just not wanting to. She shut his biphasic off, and yes, he complained and alarmed for a day before settling himself when no one would provide him with the part of the CPAP that would breath for him. The last two weeks, the o2 on his CPAP has remained between 30 and 35. None of the nurses would give him a chance to do anything lower than what he had been on the day before, even if he was saturating high on what they had him at. And he wasn't being allowed to try the low flow again, since the RN we had one day decided to try him on it while no one was around (he sats higher when being held) and he didn't do so well...which also put a minimum 2 day lapse on his next try, which put us into the weekend when no RT was around. The boy should have started NNS already, which he can't do on CPAP.

And we kept being told he was "supposed" to be at 34, 35, etc. Well, where the hell did this "supposed to" come from? No one could answer. And it became even more frustrating when we came in on Tuesday and his RN was changing the bedding and had accidentally knocked the o2 down to 24. I didn't say anything, as he was holding his own at that level. After about 10 minutes, the other half came in and commented about him being down to 24. Of course, the nurse immediately jacked him up to 35 because he was "supposed to be at that level". When I asked what she meant by he was supposed to be at that level, she just kept repeating it, and telling me he couldn't handle any lower. Um, I just stood here for 10 minutes watching him handle 24%, so don't tell me he can't handle it. But fine, whatever. I am not going to get into an argument with yet another new nurse this week. Then, as I am sitting there thumbing through his charts to see what is going on and if the results have come in from his follow up head ultrasound, I noticed that the drs have listed him as being "CPAP dependent". Um, why? Because the nurses don't know him (he had a new one every day for the last 7 days at that point in time), so they just kept him on what he had been on, and didn't give him any time to recover before turning the o2 up? Also noticed that along with the head ultrasound, they did an abdominal one, and he would have to see a surgeon after discharge for a urachal remnant. What?? I didn't even know that he was getting an abdominal ultrasound.

So, of course, I did what any parent in the NICU would have done. I asked to speak with a dr. Unfortunately, they were all in recess. So, we asked that a note be left for them to call us, as we wanted to speak with one ASAP. When we called in later that evening, no note had been left. And, of course, Riley had started to desat, so he was now up to 35% o2. I ended up going in the following morning first thing, and had a long, long talk with our dr. He explained the urachal remnant that Riley had (which was something he had never even heard of...not the U.R. itself, but the type of one that Riley has developed...a failure of one of the tubes attached to the umbilicus to dissolve so it is still supplying blood to the outer belly button - which is why his belly button hasn't fallen off yet) and that the surgeon was just a precaution...they want to see if it will dry up on its own, but if not, they may have to operate on his belly button to remove the tube. His brain bleeds, though, seem to have been reabsorbed into his brain, with trace amounts of blood in his occipital lobe. Then we got to the breathing issue.

Thankfully, as he is Riley's actual dr, he knows what he is like. He completely agreed that if he is holding his own, there is no reason for the nurses to bump his o2 up, and he would mention that at rounds and to the other fellows in case we ever argued with the nurses regarding protocol vs. what our son is like. He also agreed that since the window for the time that Riley should be starting the NNS is coming near its end, getting him onto something other than the CPAP so that he can start doing that is a necessity...even if it means flipping him to high flow as opposed to low flow. So, starting Monday, I will be able to start the NNS. :)

Here is the latest picture of our little tank (2600 85 gram gain from yesterday - approximately 5 lbs 10 ounces):

In other news, and on the topic of the little ones, my daughter recently wanted to chop her hair off, since she cannot stand getting it brushed (she has very curly hair, and it gets knotted very easily) and it often ends up in tears, even with a half a bottle of detangler. The final result (here's a before and after):


And, in the world of knitting, I am almost done the second sock for the big man. I can't believe that it didn't take me months this pair of socks I made him started in August of last year and finished about a month ago...yeah, I am bad like that). Anywho, here is the updated in progress picture (which will hopefully become a finished product by the end of the week):

I've also started making some headway on Riley's sweater (the skull sweater is not going to fit him when he finally gets out of hospital at the rate he is growing...guess I will have to make another one):

That is really all that is new and exciting. It is damn early, as I was up with the yellow beastie (my lovely medela pump, that is) at 5 this morning. Definitely time for coffee (oh, that reminds me...last picture...this is what happens to concrete when Timmies is spilled on it:

On that delicious note, ttfn


Keltie said...

Ha ha! I love to hear that he's just lazy. Isn't it great how they assert these pieces of their personality so strongly, so early? Essie was totally, "I CAN DO IT ON MY OWN!" and hated the CPAP with everything in her. He's all, sure, makes my life easier. Rock on.

And that's such good news about the brain bleeds. I was worried about the poor little dude. He's looking great!

Stephanie N said...

That sucks that you have to deal with all these crazy nurses-it must be hard for them too, I suppose, since they have no idea what he's like and his history and all that, so I guess they are just following procedure.
I'm glad he's putting on weight and I hope he can go home some time soon!!