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 of...like 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 grams...an 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):



FABULOUS!!

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 time...lol...(last 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
k.

Big Steps, Little Steps

Well, Riley is doing wonderful in the weight gaining department. As of last night, he was up to 3 pounds 14 ounces. His feeds are now up to 35 ml/3 hours. So very happy with that.

Since the infection that Riley went through a few weeks back, his breathing hasn't gotten back to what it was. It is a hard thing to see, especially since he was doing so well with that portion of his development during the first week and a bit of his life. But that damn infection just knocked him back so much. And I know that there is nothing that could have been done for it in any way, shape or form, but that doesn't mean that I don't hate it. Unfortunately, there is no one to rage and rant at for it. It is what it is. He went from being down to low flow to being back on bi-phasic CPAP (this means that it keeps his pressures, and in essence, if they aren't up to what the machine dictates, it gives him an extra breath). His pressures on the bi-phasic have been maxed (which is 10%/7%), and his oxygen has constantly been at 32% (room pressure, what we breath, is 21%). This has been a constant for the last 2 weeks. They have attempted to bring these numbers down, but to no avail. One nurse attempted to bring his oxygen down to 29%, to which he began spelling every 10 minutes. Not good. They had no choice but to bring it back up again. It is just hard, given that he has made virtually no progress as far as that is concerned.

Our primary nurse was in today, and I asked her about this - if the doctors would order another xray to see if there was something impeding his improvement of his lungs. We discussed that, and the fact that nothing has changed at all in the last 2 weeks, which was worrying me very much since the last change was just after the infection - dropping the oxygen from 42% to 32%. So she decided to dropped his pressures, despite the doctor having said that they didn't want to because of the number of spells he was having, purely because she thought he was ready, and she is the one that has to watch over him. He seemed to be doing good on the lower pressures. The numbers are still high (8%/5%), but at least we are finally seeing some movement.

We got the results of his second follow up ultrasound. He still has the grade two intercranial bleed, however it appears to be slightly smaller. They will do another follow up in two weeks time.

He also has his eye exam scheduled for Monday (it should have been last Monday, but someone forgot to put it on the list). His poor little eyes are all puffy still from the CPAP (the CPAP causes their eyes to swell, I would assume due to the pressure constantly being pushed into their sinus cavity along with the lungs). :(

They also requested a physio consult for him, which was performed today. Both Tony and I noticed a while ago that his left foot was sitting a little wonky. I know that it is normal for babies, especially preterms, to have much more flexibility in their extremities, but it has hit a point that it no longer seems normal, and with his spelling, they are not able to position him differently as often as they are with other babies, so he seems to have developed a preference to being frog legged. The physio therapist would like him moved more, even if it is just to his back with towels or blankets at his hips to bring them in a little more. She is also going to start coming in daily at 9 a.m. to work with his legs - doing stretching and such - so that they are no longer showing resistance to the movements.

In other news, it appears that I am a trend setter, but not necessarily in a good way. 4 weeks after I announced I was expecting at work, one of the girls who worked around the corner from my desk announced she was too...4 weeks from my due date (obvious to some, but not necessarily everyone). 2 weeks later, another one. Well, the one who was due 4 weeks after me gave birth last Friday to her son. He was 2 lbs 12 (great weight) and was born at 28 weeks 1. He is, so far, doing great. Got the very last bed space available in all of Ontario (they began shipping babies to Buffalo on Friday as they had no space in our NICUs). She is doing great (got to go see her son for the first time on Monday just past), despite the pain of the c-section. But, of course, they are now watching the one due 6 weeks after me like a hawk. Oddly, she was the one who told me about the other birth. I`ve told her already that she is not allowed to follow suit. That her son has to stay inside her until at least 37 weeks.

Anywho, that is really all. Still sitting around waiting for EI, as my file is still currently under review...there is a backlog, shockingly enough. Not sure when I will actually see anything, but at this moment in time, we have gone through most of our savings (and with our wedding being a few months off, that is not particularly a good thing) and have had to pull our daughter from school-daycare. Flip side to the saving money in that respect is that I can no longer go down to the hospital to spend my days with Riley, and have to find some way of being content with seeing him in the evenings and on the weekends. It is hard, and I spend much of the time calling up to them to see how he is, but, again, it is what it is.

Oh, and on knitting related news, I finally finished the socks for Tony...you know, the ones I started back in August of last year. :) Finally done. And I am almost finished the first of his guitarman socks. Feeling so productive some times. (I have found that I can balance the pumping bottles on my legs and work on socks without a problem - yeah, I am talented like that.)

ttfn
k