Today, Friday August 16, 2013, was our infusion day for August. We hit the road early this morning, and Brad immediately started complaining of a heavy smell of bananas in the van. I told him it had been like that all week, and it was from a sign he had spray painted for a yard sale recently. He asked if I had taken the sign out, and I told him yes, that I took the sign out several days ago but the smell persisted. He commented that he didn’t know that spray paint smelled like bananas, and I insisted it did.
We got a little farther down the road and Brad began to say his head was hurting and made the remark that those spray paint fumes couldn’t be good for us. I reminded him that he was the one that spray painted the sign and then put it in the van. He apologized and said he wished one of us had thought to leave the windows open on the van and let it air out before our trip. He opened the little back windows to give us some fresh air.
Sometime later, we stopped to get gas. We were well into Alabama at this point. When Brad got out to pump the gas, he asked me to get together any garbage so he could throw it away. I leaned over to look underneath the seats, and beneath the driver’s seat was a plastic grocery sack. I tugged it out and found a grocery sack full of bananas, which I had purchased on Sunday. Yes, they had been festering under the seat since the beginning of the week. I thought those bananas had gotten eaten really quickly. Climbing back into the van, Brad peered at the sack in my hand. “What’s that?” he wanted to know. “I’ve got good news!” I told him. “We aren’t breathing spray paint fumes.” He looked in the bag and then looked at me and said “I KNEW spray paint didn’t smell like bananas.” He was going to throw the whole bag away, but they were green when I bought them, so they had actually pretty much aged perfectly under the driver’s seat all week. Plus, Selah started to cry for one, and they still seemed fine, so we gave her one. (Yes, I gave my daughter a banana that had spent several days under a van seat. It was fine. Bananas come in their own protective packaging!)
My aunt was going to keep her today, and when we stopped at her house, Brad gave me my sack of bananas and told me to take them in. So I arrived at my aunt’s with Selah, her bag, and a large sack of bananas. My aunt looked in the bag. “Did you think I had gotten a pet monkey?” she asked me. “It’s a long story,” I told her sheepishly.
So of course I had to tell her the long story, and she got a big kick out of poor Brad breathing banana fumes from the stalk of bananas he was practically sitting on top of while I insisted it was spray paint. Amazing how the mind works isn’t it? Oh well. Did I mention it was early? REALLY early.
The rest of our ride went smoothly, and between the fresh air and a caffeine boost our headaches went away. Korban was nervous about his infusion, but in a good mood. He’s just now started talking about his infusions—I’m not sure if it’s because he’s started trying to work on dealing with his fears or because he has just now gotten to where he can articulate his fears or if he’s just getting better at working himself into worrying more about…well anything. At any rate, he’s been asking since last month if it was time for his infusion yet about a million times a day and fretting about it. It makes me feel really bad for him, but I am thankful he can at least verbalize some of it now.
They took us in a private room to do his IV, like usual. And like usual, he got nervous and threw up. They’ve had some personnel changes the last couple of months, and the nurses that did his IV every single time aren’t there anymore. One went home to stay with his children—so happy for her, but we sure do miss her. And I’m not sure what happened to the other one, but she was excellent with IVs and we miss her too. Plus, they both had relatives with autism and were understanding of us.
The new nurses are very sweet to us, but Korban is an extremely hard stick, and he’s had to get stuck more than once the past several times we’ve been, which between that and the changes in familiar faces, may be why he is more anxious. So today they brought in someone who is sort of like an IV specialist to do Korban’s IV. I don’t know what her actual title is, but she was really good with IVs. She was able to get it on the first try, which we were very thankful for, but Korban screams and cries every time and we have to hold him down and it’s just hard. She said “WHY does this kid not have a port?” I said “Well, the only other person that ever mentioned that to me was a doctor who is a friend of ours and knew we were having a hard time with the infusions, and when I asked his dr here about it, they didn’t seem to think it was necessary.” She told me to talk to the dr about it again, and that it would make things a lot easier.
So after Korban got his infusion started and fell asleep, I talked to the charge nurse about it. She said that another patient’s family had just gotten through having a conversation with their doctor about the same thing. Our doctor wasn’t in that day, but they called her nurse to let her know we had a question. Both nurses told me that the doctors at the children’s hospital don’t like to do ports unless it is a last resort because of the risk of infection. They had me at “risk.” Anything like that makes me nervous, but I thought if the risks were low it would be better than seeing him suffer every month. We’ve been doing this for almost two years now, and we thought it would get easier but it’s not really. Even though it is hard, it’s still worth it for him not to be sick all the time. I think even Korban would agree with that.
At any rate, our doctor’s nurse said she would staff it with her doctor, and they would call me with more information Monday. So we may be having a decision to make. We would sure appreciate your prayers on that matter!
One more area that needs prayer—his doctor in Southaven wrote a prescription for some lab work. It’s mainly to check clotting factors, etc in his blood. This is due to his severe bruising from his skin-picking. His skin looks awful, and it concerns us all. His doctor knows why he has bruises (from the skin-picking) but wanted to make sure that he didn’t have some underlying condition that made him easy to bruise. So we had the lab work drawn today after the IV was placed, to save him having to have another stick. We were so appreciative of the hospital today taking that prescription and not even batting an eye about doing it. They gave us a stack of lab results before we left. Of course, I’m looking at it with an untrained eye, a natural tendency to worry, and Google, which is not a good combination. Ha! But some of his levels were high and some were low, and I don’t have a clue what any of it means and won’t until sometime next week when I get somebody to explain it to me.
Korban did so well today. He even woke up before the infusion was over with and didn’t even complain about having to sit there. He sat in his daddy’s lap and played on his iPad . He was a little distressed because the clinics 12:00 round of patients had just come in and were getting their IVs started and he felt sorry for those kids. We were afraid he would have a meltdown over that, but he didn't. He pointed to the kid across from him and said “God bless him!” and then he asked me to say a prayer for him. So I did, and then Korban did too. So sweet! I love to hear him pray.
Speaking of that, yesterday we were playing outside and poor Selah got ants on her and they stung her. She was crying, and I stripped her down outside and then took her inside to bathe her and put medicine on the bites. Korban was worried because she was crying and asked me to “make a prayer” for her. Love it!
We took Korban’s picture schedule with us today, and it was helpful. His nurses thought it was really cool too. We had planned on going to McWane Science Center afterwards, at Korban’s request, and the nurses thought it was sweet that he was so excited and talked to him about it.
McWane was SO crowded today. School hasn’t started back in Alabama yet, so I assume that everybody was trying to get a visit in before then. It was so loud and crowded even Brad and I were overstimulated. Korban struggled a little, but only screamed one time. I quickly took him out of the room we were in and found a quiet little nook in the hallway and we sat down and did some deep breathing for a little bit. We only stayed about an hour, but it was fun. This was the only time I think we’ve ever got out of there without having at least a small tantrum over leaving. I had taken the picture card for our next activity (going back by my aunt’s house to pick up Selah) in my back pocket, because I didn’t want to take the whole schedule in with us. I had nearly forgotten about it, and when it was time to go, we were telling Korban what we were going to go next, but he was starting to get more and more upset. But I happened to remember the picture in my pocket, and showing is so much better than telling. I whipped the picture out of my pocket and showed it to him and just like that, tantrum averted. AMAZING. I can’t wait to see what else we can do with visual aids!
Both my kids love to go to my aunt and uncle's house, and Korban was excited. They also have a pool that Korban loves to look at but has never been in. He loves water but he's scared of it. Selah loves to get in the pool, and Korban has talked to her about it. The last time we were there, two months ago, Korban said that he was going to get in the pool the next time we came. He's talked about it for two months, and now the time was here.
He was nervous, and we thought he was going to back out. I was almost willing to let him, because the water was COLD! I can't believe this great, cool weather we've had this week. So very unusual for the South in August. I think God sent me a birthday present. ;) It was great for playing outside, but not so great swimming pool weather. Totally worth it though. It took all of us to coax Korban in, but you should've seen the smiles. He LOVED it, and then we couldn't get him out. So typical of Korban. First you can't get him to do something, and then you can't get him to stop doing in. He was already asking when he could go back and get in the pool before we even got him out. Such a milestone!
He had to sit on the ladder and think about it for a while.
We got him off the ladder and onto a float, and he decided this might be lots of fun!
Selah loved riding the whale!
Proud, happy boy.