Another rough day for the strongest guy I know.
He is still really tachycardic (high heart rate) and has really high blood pressure. They aren’t sure if this is his withdrawal or if he is in pain. He has really been wincing with his right leg.
This afternoon it actually looked a pretty swollen and was warm. He cries when you touch it and so it seems to be either the hip or the knee. They came and did an x-ray this afternoon which didn’t have any obvious or large fractures which is good but because the doctor isn’t a radiologist, she has to wait for the radiologist to read the results before they can tell us anything.
They actually need to come back tomorrow to take more x-rays because there might be something with his growth plate in his hip.
We did run labs for his CVP which is an inflammatory marker which was elevated. That doesn’t necessarily mean an infection but for sure means inflammation.
They also did an ultrasound on his entire body to look for clots. They started on his legs thinking maybe there was a clot where he had his cath procedure done a couple weeks ago but nothing there.
The nurse had to give him 2 PRN doses of fentanyl to keep him comfortable today. PRN means as needed. He has a lot of medicines that are PRN in the nurses back pocket just in case. He has a laxative, a diuretic and some other paid meds too. The nurse can only use to many as appropriate off of weight and within a certain period of time or the system won’t allow them to give the med when they scan it.
But, tonight he was able to fall asleep without any additional meds. This is a good sign to the nurses that he could relax and fall asleep without more meds.
It is stange because it feels like we are so close to getting out of here but the doctors won’t even allow us to downgrade to IMC status (non critical). We have a long way to go with his meds. It is going to take a long time to get him off these meds. After such a looong week of crying and struggling (mostly on his part), it just feels like we made no progress this week and maybe even went backwards.
Weird considering if felt like we go off ECMO quickly (even though it wasn’t) and then we got extubated quickly (again, not quick). But, this, it just seems like a long process. Getting him off of ECMO or off of the vent enough to get extubated were very methodical. It was every couple days we could turn the vent down. Now, we turn the meds down and have to go back up because he doesn’t like it or doesn’t tolerate.
Just trying to stay hopeful that we will get out of here before he turns one.
He is 15.2 pounds. BIG!! We walked in the day of surgery just under 11 pounds at 7.5 months old.
My mom talked with the dietitian today and she said that a lot of that could still be fluid. Because he didn’t eat for so long he was on TPN (liquid nutrition) a lot of what kids gain is fluid. It will be a while before we know his true weight.
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