Tuesday, June 30, 2009


Well, today we are three days overdue, and Riley is 3 months old. Interesting that, eh?

Anywho, I spent a loverly weekend at the hospital (and yes, for those of you who have asked and who are wondering, Mount Sinai WAS under quarantine for H1N1...there was an exposure to both the NICU and Level II nurseries due to a visitor with H1N1). Last week, we were still battling with the doctors telling us that Riley could not handle oral feeds. This came about when one of the nurses we got stuck with...and yes, I mean "got stuck with"...gave him a bottle too quickly, and he immediately vomiting almost the entire feed back up. Now, prior to this, Riley had taken maybe 8 bottles...and all of them had been paced. I called in last week to hear "well, he took his bottle too quickly and threw it all back up". Um, first off, the kid is 12 weeks old. He didn't take anything too quickly, you gave it to him too quickly. Second off, please tell me for the love of christ that you didn't chart it that way, as I have spent the last 2 weeks battling for them to provide him with bottles when I am not there to breast feed, since that is the only thing keeping them from sending him home on oxygen.

Well, sure enough, the damn RN had charted it, and Riley's feeds were changed back to 1 bottle per shift; breast feeding on demand ad lib when mom in. Meaning, in short, that if I wasn't there to breast feed him, he would be allowed to do one bottle, and other than that, it would all go through his feeding tube. So yes, I freaked out and forced them to see that he can handle it. I booked myself into their care by parent room, and spent the entire weekend in the damn level II showing them that he could do it. I hate that it had to come to that. That the level of credit he is being given is completely negligible unless I am taking it into my own hands. But, the up side of it is that the feeding tube is completely gone now, and is not going to be going back in. He is now on bottle or breast, period end of story.

Of course, it helps that he is no longer at Mount Sinai.

That's right. No more 6 doctor panel in order to change things. No more nurses agreeing that things should be different, but doctor on call not wanting to stir the pot by changing anything. No more "your son can't do this, but we aren't going to bother setting up any sort of a plan to get him to". How freaking awesome is that?!?

While I was rooming in at MS, I spoke with one of the doctors (after they grudgingly admitted that he was able to handle all oral feeds) about starting the process to transfer him out to Credit Valley, if they had space, and home on oxygen, if they didn't. He stated CV had no spaces, but that he could certainly put in the request to start the home on oxygen process...which would take about 3 weeks! 3 weeks?!? "If we rush it, we may be able to get it through in 10 - 14 days." Okay, I don't even want to have him here under your "care" for another day let alone another 2 weeks. Then, of course, this was mentioned to one of the nurses, who completely contradicted him in his timeline (saying that it only took a few days for the process and approval to go through). Followed by another doctor contradicting both of their timelines. Yeah, it was time for us to get out of that place.

However, one of our nurses was a gem and called CV (where she also works) about a bed space for him since he was born there. They had one, and were willing to hold it for Riley until the clearance regarding H1N1 was given. Great! Wonderful! Phenom! Until they decided that there was another baby in the level 2 who had been on the list to transfer to CV (who was born at Mount Sinai) that they decided they would let have that bed space. Um, first off, Riley was born there. He has top priority to go back. Second off, the baby in question who essentially stole our bed space has been having issues and even the other nurses have flat out said that he shouldn't be transferred anytime soon. But yeah, sure, you go ahead and give our damn spot to that baby. Can't say as how I could expect any less.

I am sure that if I wasn't dealing with constant negativity (such as being told that Riley going from "he can't survive off his CPAP" to 50-80 ccs of oxygen in a little less than 2 weeks being considered "not very good" and "virtually no progress"), I may have been a little more understanding. As it is, not really. I am no longer in the mood to play nice with that place.

So, Riley has moved to Trillium. I went over his first night to visit him (around 1:30 a.m.). He was settled and great. He is already making progress on what he was when he was at MS. He is down to 75ccs of oxygen at 50%, which is a big step up from the 80-100 ccs of oxygen at 100% that they kept sticking him on at MS. And he only has one doctor who will decide upon his care based on him. Hmmm...taking things on a baby by baby basis? What an interesting concept.

I also love that he is allowed to have all the little knitted things I made for him (such as his hats and his booties and his blanket). AND, best of all, my daughter is so very happy that she can finally touch him, and hold his hand, and rub his back. She was almost in tears over the fact that she couldn't do any of that.

His doctor (the only one that he has) has decided that she wants to monitor him for a few days, and will decide on Monday if sending him home on oxygen would be the best bet. If she believes so, we will have the RTs in that morning, and hopefully have him home a few days after that. If she thinks that he is doing good and making some real progress, to the point that in a few weeks, she thinks he can shake the need for the oxygen all together, she will let us know, and they will keep him in for those few weeks.

Either way, it takes me 15 minutes to drive over there in heavy-ish traffic. I can go up and feed him, come home and eat and play with my daughter, go back for his next feed (almost have a normal life. And I don't have to battle people for my son to get an inch of credit. That is probably one of the nicest things.



Keltie said...


I am so happy for you. I've been so frustrated for you reading your struggles to get Riley's care moving forward and this is so awesome. I can't tell you how thankful I am that Mt. Sinai had a flood the night Essie was born or that's where we'd have been, too, and ... yeah. WCH might not excel at the antenatal care so much, but their NICU was great and I felt like I was listened to almost 99% of the time. The 1% is due to the fact that yeah, there are some not-so-stellar staff there, too.

Anyhow, congrats to all of you! Good luck on Riley coming home soon!

lulubelle said...

So glad to hear things are getting better!!