Fontan Day 5

Last night, after I wrote the last blog post, Asher was woken by the nurse about 9:30 p.m. for his last round of meds for the day. He has become more and more resistant to taking medication, and this time was no exception. The nurse brought in three different medications for him to take. After much coaxing, I finally got him to drink the first two. The third was the one he doesn’t like, so we took it slow and he finally got it all down. Unfortunately, as soon as he finished the last one, he threw up all over, which meant we had to do them all again, not to mention having to change all his clothes and bedding. It took about 15 minutes to get the meds back up here, and the nurse said one he didn’t really need, so I started with the one he doesn’t like first this time, his lasix. By then Shane had come back from the Father/son’s activity, so he helped me coax him to drink it. After each sip, we gave him an m&m to help make it through. Unfortunately, right as we finished, he threw up again. We were all a bit exasperated at this point. I quickly gave him the other medicine, which he likes, and he finished it with no problems, but we still had to have the lasix. I told the nurse that maybe we should try mixing it with something. They called up another dose from the pharmacy, but by now, Asher was so, so tired, and we tried to keep him awake reading books and talking to him until it arrived. The nurse finally brought it in, mixed with a large spoonful of chocolate pudding. He said the pudding tasted kind of weird, but he ate it, and we have been mixing his lasix with pudding since then. He says it kind of tastes like medicine, but he will eat it and not gag, so hopefully that will keep working.

I got home really late after the medicine incident, and Shane slept up here for the night. I slept in a bit, went for a run, and then the boys helped me plant the garden before I headed up here. Shane built these new garden boxes for me and worked so hard getting them done and filled before the surgery, but I didn’t ever quite get it planted! The boys helped me mix in some fertilizer, and then they helped plant some veggies.

   

Meanwhile, Asher had a pretty good night’s sleep up here. He ate almost a whole pancake and his entire yogurt for breakfast, and he seems to have a bit more of an appetite back. They had to draw some blood, and they took it out of his vein in his hand. Shane had him keep his eyes on him, but he screamed out and it was hard to keep him still. He managed it though, and was glad when it was over. He and Shane worked quite a bit on Asher’s fire truck Lego set from Precoa, and he was actually pretty good at figuring out where all the pieces went. He had a short nap too before lunch.

   

My mom brought the kids up again around lunchtime. They ate lunch at the garden, and then we joined them to blow some bubbles and play around. It is good for them to be together, and you can see how happy Asher is to be around them. Madeleine loved Asher’s wagon, and James took her on some rides around the garden while we blew bubbles.

     

After another little nap this afternoon, his nurse came in to drain his pleural caths again. He is getting a bit better at these, but this time they had to change the tape and caps on the cath. He is not a fan of getting tape taken off, and I had to hold him down while he screamed as they took the tape off, cleaned it, and then put more tape on. We love the nurse we have right now though, and she is really good at talking to him and helping him even when it’s not fun.

After some dinner, we went down to the garden one more time, blew some bubbles, and then watched the helicopter land. As we went down to the garden, Asher said, “Mom, I just didn’t know the hospital had so many things like our house!”  As he held up his fingers one by one, he said, “They have beds, food, wii’s, tv’s, and medicine!”  He is a funny boy.  I gave Asher a bit of a “bath” before bed by wiping him down good with some bathing wipes, and trying to get off at least some of the sticky residue that is all over his body. Shane went home for the night, and I am hoping that our 10 p.m. round of vitals, pleural drains, and medicine goes much better than last night.