Now we're home -- and dealing with a few new challenges. Our first responsibility is to keep the incision sites clean: the sternum cut that seems far too long, and the 3-inch incision over his left pec housing the defibrillator, and then the two holes where the tubes came out. Watch for fever, strange coloring or unexplained sweats or breathing patterns. So far so good.
Malkolm is slowly becoming more himself -- yesterday was a rough day; he was irritable and angry -- almost depressed it seemed. Totally picking fights with his little sis, and in general not handling things well. Of course, he had heart surgery less than a week ago, so some of the whole fish out of water thing should be expected, but there was just something not quite right about his mental state even in spite of the surgery.
Today, he was more himself than he has been since we left the ICU. I am seeing flashes of his normal sense of humor and I feel like the mood swings will go away completely once he's been off the heavier pain medication for a while. The ibuprofen seems to be managing the pain well, so we're sticking with that for now.
I realized yesterday that I never really thought about the psychological aspects associated with the surgery, and wasn't really prepared for the extra stuff outside of just taking care of my little man. He was just so courageous when it came to this whole thing, it's easy to forget that he's only 9. I know I keep saying that, (as much as I say it, should be enough reminder for me) but I guess if you knew him you would know exactly what I'm talking about.
So, now I'm kind of looking into this; talking to people who have had major surgery and asking those who have had children who went through something similar. I'm finding this reaction is not all that uncommon, and we will just ride the waves until things settle a bit.
The cool thing about having a child like Malkolm is that we can talk to him about this and he really understands it. He gets it. We had a long talk with him last night at dinner, and we all decided it would be best not to use the Tylenol 3 (Tylenol with codeine) anymore, and we can see today that it was the right decision. I do think it has made a huge difference in his mood, and he is not in any more pain than he was while taking it.
When his children's pastor was talking to him on the phone, and he asked Malkolm if he had run a mile yet -- Malkolm told him, "yeah, I just got back" without missing a beat. I have to admit I kind of breathed a sigh of relief at that point. And today, when he was reading the second book in the Percy Jackson series, he was going on about the parallels with "real" Greek mythology and the names of the characters and their attributes. I mean on and on. To the point where I had to tell him to go back to reading. This is the Malkolm I am used to, the ever-analytical, kind and giving boy I know to be my son.
He received a cool gift basket yesterday from our church, it was like junk food heaven. And today, another gift basket from a classmate -- who walked two blocks just to bring it by (it was heavy too, I was totally impressed!). Malkolm shared everything with Malia without hesitation.
People have called and are extending support in ways I never thought about. In a way, it's almost like having a new baby. We dusted off the baby moniter and put it in his room so he can call for help when he has to go to the bathroom at night if he can't get out of the bed by himself. So far he's doing really well, though, and it seems he is a stubborn goat and wants to do everything himself. I told him that he has to let me help him sometimes, just for my peace of mind. And the docs said it's good for him to do as much as possible, as much as he can handle. I'm thinking we might go for a walk tomorrow.
I am struggling a little to get him to drink plenty of water. This is a big deal and can have a huge impact on his recovery. He understands that if his body retains fluid, the fluid from the surgery (that was draining out of those tubes for a while) will also be retained, and this would not be good. If his body gets dehydrated and starts holding on to fluids we could have some real problems -- that is something I need to be more on top of ... maybe I'll set the alarm on my phone for every hour and a half or so, so I can remember to make him drink more. One thing that always works as an incentive is just reminding him that if he does get dehydrated he might have to get and IV to get more fluid, and that pretty much stops any complaining in its tracks.
At one point, he was talking about three giants that came into Percy's gym class -- one named Marrow Sucker, one named Skull Eater and Joe Bob. Apparently (bear with me here), they were cannibal giants, and Malkolm was trying to figure out why Joe Bob was the name of the third. Asking me all kinds of questions about what I know about Greek Mythology (times like these I wish I'd paid more attention in Mrs. Rooth's class during the Greek Mythology unit my sophomore year in high school). Wondering why the author named the third giant Joe Bob. We agreed it may be a joke -- because the other two names are so intense, and then there's this unassuming country-esque name like Joe Bob. And then the fact that the name for the giants actually translated to mean "Canadians" -- humor not lost on him (but sorta lost on me).
Tomorrow we have to go get a chest x-ray at a local radiology clinic and then Thursday we are headed to Thomasville to go to a pediatric cardiologist for his one-week follow-up -- and we bring the x-rays with us. The cardiologist we usually see only comes to Valdosta every so often, and he is not in town this week, so we travel. Guess I should get used to this.
April 12, we go to Atlanta again for the defibrillator follow up. We will go no less than every 6 months.
I am a bit distressed that the insurance denied the claim for the genetic testing, which means $5,400 out-of-pocket cost for Malkolm's testing if we can't finagle some sort of deal with them. What a buggar.We'll find out more on the 12th, but the docs seemed to think that maybe the genetic testing people might be willing to work something out.
We finally remembered to turn in the paperwork for his school so we will start homebound sometime soon. This is where a teacher comes to our home 2-3 times a week (three hours a week total) and teaches Malkolm what he is missing in class. He is also not marked absent these days either. He will not be going to school till after April 24. Long time to be absent, but I'm not really worried about him keeping up. He's a pretty sharp kid.
Malkolm has already survived a couple of direct chest pushes from his little sister -- sometimes she forgets and starts messing with him -- and he has learned to give her warnings when she starts to get a little rowdy around him. She was devastated when she realized she had hurt him; guess this is a learning experience for all of us.
ok, well. He's still up. Had to wrestle the book away twice already. Seems my little Odysseus doesn't want to exit book world. Time to follow up and make sure he gets in the shower and then on to bed.