Tuesday: There MIGHT be some slight good news this morning. His labs are staying stable (mostly) for starters. And regarding blood cultures: For a few days they were all negative, then yesterday we were told they were positive again but not specifically told where. Today, it got clarified that his peripherals are negative and his central line is positive.
For those of you who didn't go to medical school or live in the hospital for months now, I'll explain. There are several types of lines that are considered "central lines" (PICC, in the arm; Broviac, in the chest: Central Vein line, in veins like the femoral, etc.) Those can receive medicines, TPN and blood products in ...but they can also have blood taken out. The perpherials are the traditional IVs.
My understanding is that the central line can be infected in a localized way or the whole body can have diffuse infection. On December 1, the central line was positive but peripherals were negative. Then both became infected.
So the semi-good news is that it's not to the peripheral sites (as of 3 days ago).
1pm, they put in 2 new peripheral IVs (one in each hand ... so he can use neither hand). And in a little while, they will pull his Central line. Eventually (not sure how long) they will have to put in another central line for meds, TPN, etc.
So ... we're hoping the infection is only localized and not diffuse. And we're hoping that they are pulling it soon enough this time (versus last time when it was very late and he had to get stable before it could be pulled).
I'm just not sure how much physical and emotional reserve either of us have left.
2pm Zoe's surgeon, Dr. Ricalde, stopped by to discuss my tooth. I'd emailed her the other day for a personal recommendation (afterall, she went to dental school). She discussed the options and clarified what I was looking for. I told her that I just had no extra emotional capacity to make decisions right now so I needed help. She was very, very helpful. She said she'd write an email to her personal dentist/friend and explain the situation. He'll do just what we discussed and get me in/out. (Wow! I have cool friends.)
3pm The infectious diseases doc ran up to the nurses station and said Manny's urine culture is growing bacteria. They needed another sample. (This involves a catheter... ::shiver::). This is especially necessary since his left kidney looks "Suspicious". (Will clarify that further today.)
4pm, he cried and cried. Grumpy. Couldn't be comforted. I let him nap. (Knowing that would be a problem tonight when it came time to sleep and he didn't want to.) But he needed it!
7pm, a knock at the door. It's Mrs. Ryan. She was Kaley's 4th grade teacher and is currently Sam's teacher. LOVE LOVE her. She's beyond awesome. She "gets it". If every classroom in the world had her, we'd have a lot less problems in the educational system I'm telling ya. Like every year, it's amazing how she ends up with the most well behaved students, do the best on the tests, love school, etc. What are the odds of THAT with a random system?
Anyway, it certainly boosted Kaley's spirits to see her as well. She was showing off the things she's been doing in this room. What a nice surprise!
9pm They took out the Central Vein Line (the one in the upper groin). Oh my. First, there were 4 people in here ... mostly people who were being oriented to a new job here. (They asked first and I said, "If he has to go through this, might as well let people learn from it.") Once they got to the CVL itself, it came right out, no problem. But up until thern, there was a ton of tape and "dressing". His skin was completely raw under it. They call it "skin breakdown". Now remember, this is an area about 5"x5" IN his diaper area.
10:30pm, Manny is still wide awake. He's discovered the talking tom app where it repeats what you say. He has the funniest conversations with this thing. He also loves bopping it on the head and making it fall down! Manny cackles. Then we found a talking robot app and Manny was in heaven.
He had a very restless sleep. He just couldn't get comfortable. And he's very whiny. (After all he went through, just in Tuesday alone, would make most adults curl up in the fetal position and suck their thumbs.)
Wednesday: 8am, he was up, awake and happy again.
Me? I find myself conserving physical and emotional energy. I'm not sure how long these reserves are supposed to last. I'm quite shell shocked by the events of last week. This time last week we were discussing putting him on a ventilator and I knew that likely meant permanent life support. I'm thankful we didn't have to do that. But I can't begin to express the emotional toll the week in ICU took.
So I'm not as "chatty" as usual; just trying to save my energy for Round 2.