CHOP home health care came by today and dropped off a pump, formula and pole to hang Blaise's feeds. As Annie said yesterday, we are going to start feeding him at night to boost his nutrition. See below, Blaise had some Pedialyte pumped into his system this afternoon. I can't help but think this might have been helpful to me during my highly competitive/successful athletic career!
Blaise
So Blaise had a rough night, and an even more rough day. Annie detailed our clinic visit yesterday, which told us that Blaise was physically in a rough spot. I say that because at this point in his therapy, the chemo has been working. But remember, the chemo's job is to kill the bad cells. The cocktail of pharmaceuticals in his body is so strong that it also kills the good cells, and compromises his body immune system. So while it works, it makes him vulnerable to other infections, infections that 2 months ago would not even phase him. He also is at an increased risk of infection because of his recent surgeries. The port and the "button" are foreign bodies that his cells are still adjusting to. (Side note: this post is sounding a lot like my sophomore biology notes. I got a B+ in that class so I am basically a doctor. Ms. Brown would be so proud I remember any of it!) That being said, he got a fever last night that continued into the morning. I'd like to think he was just sad because I went to work, but I know the biological factors at play had a significant impact on his mood. Annie tracked his temperature, and we have guidelines for when to call and go in. We call the NP with anything over 101.3 (high grade) or with 3 checks between 100.4 and 101.2 (low grade) with in a 24 hour period. She called our NP after 2 low grade fevers, and they actually came up with a preventative plan to avoid waiting the full 24 hours, so they went into the clinic. During the next cycle, this would be an out patient thing, but due to his recent surgeries and increase infection risk, this turned into an overnight admission. So Blaise and Annie are back on 3 South down in West Philly.
What's going on there... A few things. Blaise is actually super pumped, he told me on a Google Hangout. The bandage around his "button" has been removed. He still is having a hard time letting people look at it, but at least its not that scary picture Annie posted a few days ago.
Funny story. As the nurse's were going to access his port Blaise was heard saying, "No, I'm sorry, do not access my port!" When his pleas were not heard by the medical staff, a resigned Blaise exclaimed, "Good grief!" This led to a team decision have Child Life develop a plan for him to better understand what's going.
They see him as an incredible smart kid, that understands most of what's happening, they want to help him get over this anxiety associated with connecting/disconnecting his tubes. Honestly, because after that, he's fine with whatever happens. They are going to develop some type of chart/check list thing similar to the ones we use with our middle school kids who are not doing homework! Obviously, because Chemo Duck did not work! I am hopeful this will work, but Blaise does do whatever he wants, just ask Ms. Dottie and everyone else at St. Matt's.
One of the benefits of this trip to the hospital is that Blaise is able to get his transfusion, not the Saturday Morning Golf League type of transfusions his grandfather enjoys, but his blood transfusion that was tentatively scheduled for Thursday. As I write this, the blood is hanging by his bed in room 313.
After the blood goes in, he will begin his overnight feeds tonight too. All this in preparation to repeat it in a few days after cycle two. The oncologist in the building tonight did tell Annie that some kids respond this way after the 1st cycle because it is such a shock to their systems. And then for subsequent cycles they are better. She also said some kids are just miserable the whole time and will be admitted after each cycle. But since this is only his 1st cycle ever, we're going to pretend he is the kid that responds positively each subsequent time!
I think one of the best parts about all this is CHOP has a firm commitment to continuing to function normally. After our visit yesterday, and today's issues, I have been searching the internet for medical grade bubbles I can wrap Blaise in. But CHOP is telling us to do the exact opposite. The have told us twice to go to the circus tomorrow night and keep our plans for his birthday Friday (which isn't much yet...). I am amazed at the level of thought they put into my kid, and all the other kids too. The only thing I can think of is that they can treat anything, so we should allow Blaise to be a happy kid, and if something screws that up, they can fix. It certainly is reassuring to me with my low level of parenting skills.
Lucy
Lucy is crazy. She was a terror this morning for her mom apparently. She also kept trying to get Blaise off the couch and play. She ran herself into the ground today and finally passed out with "Bots" before the 5 o'clock news! She did wake up at 7:30, and I asked her if she wanted to eat dinner. She pointed to her crib, and asked for her boppy (pacifier), and went right back to sleep after a quick diaper change. I think she feels like she needs to play enough for her and Blaise.
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| New nightgown and cowboy boots! |
So it was not best of days, and on top of the Blaise issues, we had a pipe burst last night and our screen door broke. All in all, not what I wanted to deal with, but it could have been worse.
Again, thank you so much for the support, the cards, meals, prayers and funny text messages! Everyone says how Annie, Blaise, Lucy and I seem to be staying so strong and positive but that is only a result of the people we have holding us up. Thank you, form the bottom of our hearts, thank you so very much!
