Today made one week since Riley’s surgery. One week that we have been back at Duke. Really a small amount of time considering all the time we were here before, but it’s just as exhausting.I didn’t get much chance to update or even twitter today. In true Riley fashion, he kept me busy and on my toes from about 6:30am this morning until just now…and the night isn’t over yet.
They disconnected his IV fluids this morning (his central line is still in, just not connected to the IV pump), and said get him out of the room…take him for a wagon ride, outside, whatever ,just move around. We wasted NO time on that. I fed him, dressed him, and outside we went! He was cooing at the birds and vehicles and people. He was doing MUCH better at sitting upright today and more importantly, at holding his head up on his own. He’s not been doing that and THAT was worrisome. Being weak in the belly I expected. Not being able to hold up his own head (it just flopped backwards) was a shock. Today, he was a big boy and held it up all on his own.
Todays goal was to start Riley on formula. 1oz every 3 hours and progress as tolerated. If he could show reasonable progress with this (meaning he doesn’t have to be back up to his full/normal feeds), then they would discharge us tomorrow/today now (Thursday). Originally, on Monday we were told this, and he just wasn’t ready, so we’ve been put back a few days. So today, Riley needed to eat, up his intake steadily and most importantly…KEEP IT DOWN!
Well, after a bumpy start this morning, he took off eating and as of right now, has kept it down. I think burping him is the key, and could have been a major player in his vomiting the past few previous days in addition to his reflux being out of control and his tummy still working slowly. When the day was done, Riley did exceedingly well with his eating today. I think as far as that goes, we are home free.
They disconnected his IV fluids this morning (his central line is still in, just not connected to the IV pump), and said get him out of the room…take him for a wagon ride, outside, whatever ,just move around. We wasted NO time on that. He was doing MUCH better at sitting upright today and more importantly, at holding his head up on his own. He’s not been doing that and THAT was worrisome. Being weak in the belly I expected. Not being able to hold up his own head (it just flopped backwards) was a shock. Today, he was a big boy and held it up all on his own. Things seem like they are moving in the right direction.
Around 8pm, Riley was in the chair with me, laying on my chest as I watched TV. He had on a sleeper that I put on him to take him outside (cover his belly). The NA came in to take his vital signs and his temperture was 102! That nagging fever! She tells the nurse who then comes and retakes it, finds it the same and pages the oncall person for Peds Surgery. The same resident I had to struggle with the other night over prevacid was on call tonight. Greaaaat. He orders blood and urine cultures , but in a way that I nor his nurse agreed with. He and I ended up in battle over the telephone again and it was just a huge nightmarish ordeal that I’m too tired to type out.
The end result is that his CBC came back with a HUGELY elevated white blood cell count. Not good.So….we are waiting to figure out what to do with this. More antibiotics (he just had a dose this morning)…pull out that central line and have no IV access? Redo blood work?
The doctor just came in while I was typing and examined him. He thinks he looks ok (he has acted ok today also). His belly seems fine, everything sounds fine, chest xray was clear, etc. He is thinking that we could have a skewed result due to the method the sample was obtained (all part of the saga).He feels like based on Riley’s vital signs and examination, that we can wait till morning to draw another blood sample and see what it’s results are. The only issue with this plan is that we were BARELY able to get the needed blood from his central line tonight. If it will nto draw back tomorrow morning, they will have to draw it with a needle. From the kid that a week ago, they stuck 10 times and couldn’t get a good vien and is still bruised from those attempts. I don’t know HOW they will ever be able to do this blood draw.
So Riley could be going home today (Thursday)…or he could be facing a battle with an infection. We will know in the morning. Only Riley could have this happen on the eve before he is to be discharged. I’m so sad for him because he was so strong today with his eating, and keeping it down. There were a few close calls. His reflux is still a little uncontrolled because he has to have the prevacid build back up in his system. He fought hard and it will be VERY disappointing if some infection (like a line infection) holds him back now.
I will update as soon as I have news in the morning. We have to get the blood drawn, and then wait for the result and I don’t know what time they are going to come to do the draw.It was a few hours long event tonight to get blood and urine. I’m not lookng forward to a repeat performance.