I’m writing from Primary Children’s hospital again. Tuesday afternoon, Patrick started to act as though he had an upset stomach. I got him settled and he took a nap, but before long woke up upset again. So, as I always do, I took his temperature and lo and behold, he had a fever.
I made a call to the GI on call, Dr. Pohl, and he made arrangements for us to check in to the hospital directly, without going through the E.R.
It was strange to come in without the E.R. routine, but kind of nice, too. The infant unit was full, so they put us in a room in the Children’s Medical Unit just down the hall. As usual, the first few hours were chaos as I gave history, got meds and supplies ordered, and generally got acquainted with the medical staff.
Typical protocol is to draw blood cultures to look for and identify the infection he has. So they call IV team and they draw blood from a vein while the nurse is responsible for drawing blood out of Patrick’s PICC line. They also draw blood to check levels of other important things like blood sugar and electrolytes through his PICC.
Well, Patrick’s PICC line has been tricky and occassionally with clot and not draw back. In this case, neither lumen would draw back. So about 11 p.m. they started soaking it in something to break up clots… but it still wasn’t working.
Finally at midnight things were pretty quiet, even though they didn’t have labs, and I decided I’d better try to get some sleep.
About 2 a.m. things got exciting again. First, his diaper leaked. Right now, Patrick’s ostomy doesn’t have a bag on it (that’s a story in and of itself) and so I had to get up to change it because the combination of creams and powders required to protect the skin against what is essentially stomach acid is pretty complex and not your standard nurse’s experience.
While he was awake, they took his blood pressure and it was frighteningly low. They checked it about 20 times over the next stretch of time and even though he was awake and uncomfortable, which should raise blood pressure, his was low.
So they finally got his PICC line to draw back and drew some emergency labs to look for dangerous things like low blood sugar, drew blood cultures, and called the ICU to come look at him.
A doctor from the PICU came and looked at him and checked his blood pressure and said that he needed to go downstairs so they could give him medicines to bring his blood pressure back up.
So, at 3 a.m. we packed up and transferred to the PICU. It was odd to be there in my PJ’s giving his medical history. Finally at around 5 things were pretty stable and they recommended that I go get some sleep. So I went and crashed on one of the beds in the parent waiting room.
The next day they explained that sometimes infections cause your blood pressure to drop. Patrick responded very well to the medicines they’d given him, though, and was pretty stable. However, everytime he went to sleep, it would drop again.
Finally after being in the hospital for a full day, the antibiotics started to work. He started to act like he felt better, and his blood pressures came back up.
Thursday afternoon he was doing well enough that they moved him back from the PICU to the Infant Unit. Which is where I’m writing from tonight.
Patrick obviously feels MUCH better! He’s been back to trying to sit and stand and he’s getting stronger and more coordinated all the time.
The tentative plan right now is for us to go home Saturday. As always, when we leave the hospital, all of the nursing duties fall back on Brian and myself, with help from friends and family where possible. He’ll be on two antibiotics and an antifungal because of a diaper rash developing that is most likely yeast. (Antibiotics create the perfect environment for it to grow). With meds every 6 hours at least, sleep will become a very rare commodity again. Of course, as I’m posting this in the middle of the night, you’ll see that it already is.
We’re grateful that this bug seems to be one of the less scary ones. It’s called enterococcus, which lives inside the gut. It most likely either translocated (leaked) into the bloodstream from his gut or got in by accidental contamination of his IV tubing. Any way it goes, it required just 2 antibiotics to treat and Patrick’s central line so far can stay in. In those regards, we consider ourselves very lucky.
Of course we’ll do all we can to keep you updated on what happens from here. Thank you again for all of you do for us.
Patrick Hoopes 