Wow what a crazy day....I went to the NICU this morning at my usual time to catch up on the latest plans for Riley. Still downhearted about the weekend (more about that in a moment), I knew there was a new doctor on service today (and for the rest of the week) and so I was interested to hear his take on where to go from here. Let me back up a moment...Riley was taken off the IV yesterday and allowed to bottle some small amounts, while the rest was continously tube-fed. I was expected to have his bottle feeds slowly increase and his tube feed slowly decrease and maybe by the end of the week be where we were last Wednesday.
The doctor sat me down and told me his plan. It took me about 2 hours to snap out of the shock of his plan. His plan was/is this:
1) remove that hateful tube from Riley's nose
2) that means no more tube feeds
3) let Riley eat what he wants, when he wants
4) if he does well with this, discharge him HOME at the end of the week
what did I just say?!?! YEP. Dr. Sharaf says "feed him and send him home". He says that Riley will eat all sporadically to begin with and then he should begin to take more at every feeding. and don't you know, Riley did exactly what he said he would today? Granted he didn't eat the amount they NORMALLY feed him in a day. But at every feed, he took more and went from snacking on small amounts every hour to two hours to gulping down 3oz with gusto just a little bit ago for me. He DEFINITELY does NOT like the feeling of being hungry and WOW what a cry he lets out about that. Hopefully, that will continue through the night.He did gain a small amount of weight today and that is encouraging as well. If he needs the extra calories still, we are going to be using a completely hypoallergenic and completely digested formula which is much less likely to cause issues with dumping. It is costly, but much less costly than the daily room and board rate in the NICU.
So once again, it's time for Riley to prove himself. He and I had a nice little conversation earlier about how he needs to be a good boy and eat lots from his bottle so they will let him go home. He laughed at me. No joke. But he did well today, so I'm letting myself get hopeful about it.
What made me even more hopeful is the doctor really seems to think Riley will do this. So much so that he set up the following:
1) Riley gets circumcised tomorrow. OUCH but it's gotta be done.
2)He setup appointment for Monday (as in a week from now) with the regular pediatricians office to go ahead and let them get aquainted with Riley
3) he had me call Duke Childrens to setup an appointment with their surgery clinic for a follow up visit. That is Jan 30th (Duke Nurses, you KNOW we will be stopping by to visit)
4) he gave me prescriptions to get filled for Riley's Prevacid and Actigall and vitamins
5) I was asked about 10 times today if I had his ostomy supplies on order (I do)
6) he gets his hearing screen either tonight or tomorrow, depending on if he's alert and calm during the night (sound asleep right now and been very active so far tonight)
7)Setup appointments for follow up Eye Exams and developmental specialists (these are months away)
8)made orders for discharge bloodwork later this week
so it sounds like Dr Sharaf really plans to give Riley the boot from the NICU later this week. We are dazed but thrilled of course. Jay will be in the NICU most of the day this week to make sure Riley gets fed as soon as he wants to eat. Depending on the nursing assignments at night, one of us may spend the night there as well. We want to give him as much of a chance as possible to get out of there.
So that is pretty much the story about Riley right now. Obviously, he's not discharged yet, but it could very well be really soon. Unbelievable.
So obviously things have improved over the way they were Saturday. And I just have to say something about my post from Saturday. I actually got a few comments and several emails that basically suggested that I am ungrateful. And everyone is entitled to their own opinion. However, those that KNOW me and LOVE me know that couldn't be less true. I have dear friends who have lost infants and babies and children. I have WITNESSED horrific things that have happened to babies and known them to die. I have sat by my own babies bedside and prayed so hard that I ran out of things to pray for and resorted to just "please don't let him die". I said that so many times in whispered breathe next to his bedside while being in so much pain myself I felt like I was going to pass out, that I was hoarse. I have watched families gather at their babies bedside, so overcome with grief they couldn't speak, and watched their nurse, doctor AND chaplain bawling along with them, as they watched their baby choose wings over feet. So YES...I DO know how lucky I am that Riley is still alive. I literally thank God every day for that fact. So don't suggest to me that I do not know how lucky I am to have him. But that does not change the fact that his STILL being in the hospital makes life HARD. Seeing TPN and lipids brought back into his room and strung up and connected through an IV that took 2 sticks to obtain just kind of throws you back in your mind to much much worse times. There are days where it seems like this journey is NEVER going to come to an end. I know there are alot of people who follow our story that have experienced a journey similar to ours. I know there are people who follow our story who have lost children. And I truly truly feel for you. Could it be worse? Absolutely. But you can believe that even though I have had it up to my eyeballs with the whole living in the NICU situation, I say a prayer EVERY SINGLE DAY, sometimes MULTIPLE TIMES a day that I am lucky enough to be able to walk in that NICU and have Riley look at me and smile. that life is hard, but he is still here. and he's thriving and he WILL come home at some point. but again, sometimes, circumstances just get to you. Thankfully, the people that matter most to me support me 150% on both my good days and my bad days. And that is what matters most.
Here is a picture I took this weekend. You can see the small little scab where Riley's broviac used to be.