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.

     

Fontan Surgery–Day 4

Day four here at the hospital. Those pre-Fontan days are seeming like a lifetime ago. Someday these Fontan days will seem like a lifetime ago too. But for now I am enjoying all this time just with Asher, and today I felt like we had a lot of fun times together with him feeling a lot better. He told me when he woke up this morning that he was feeling better today, and in his cute little prayer over his breakfast of pancakes (of which he only ate half), he thanked Heavenly Father that he is feeling better, and he prayed for his brothers and sister, and that he could be nice to his friends when he gets back home.

Asher had a good night last night, taking his medicine okay with some coaxing, and going back to sleep after they emptied his drains at 1:00 and 5:00. This morning, the nurse came in and wrote down our plan for the day, which was super helpful. He loved his nurse today, and I think she helped break through a bit of his fear of them. He has started crying whenever anyone walks in the room, afraid of what they are going to have to do, but that had eased a bit by the end of the day, and she will be our nurse tomorrow too so that will be helpful. He told me tonight that the nurses are really nice, but he just doesn’t like what he has to do with them.

My mom came up mid-morning with Madeleine, and she had fun eating all the m&m’s stashed in the cupboard for when they come to visit while grandma visited. I can’t imagine doing all this without my mom here. She takes care of all the them, getting the ready for school, making them meals, getting them to their sports activities, and giving them the routine they need to feel like things aren’t too chaotic. She makes it so I can just focus on Asher and not worry about the rest of the clan at home.

Right after Shane got here, a couple of people from his work came by and brought Asher a really cool Lego fireman set. He was excited to be able to put it together. He also got a delivery of a fun stuffed animal with a big bouquet of balloons on it, also from Shane’s work. They have been so great through all of Asher’s surgeries, taking good care of us and being flexible with Shane.

After some lunch and some books with dad, Asher took a nap for a bit. He woke up to Uncle Kelly and Aunt Jessa coming for a visit. While they were here, we heard a helicopter coming, so we hurried out to the end of the hall to see it land. He’s been wanting to see one since we got here, and he finally felt well enough to make it there in time. Just after Kelly and Jessa left, someone came by from art therapy and brought Asher and canvas and some paints. He wanted to sit in the chair while he painted, and he chatted away with me and Shane as he painted his picture.

   

I asked Asher to smile for a picture and this is what I got.  And Shane reading books before Asher’s nap.

 

Going with Kelly and Jessa to see the helicopter.

   

More medications and emptying of his pleural caths required an orange popsicle to help cheer him up. They also took off his telemetry monitoring (all the stickers with cords on them – there were five across his chest). It made it so much easier for him to move around, and he felt like he could put a shirt on now. He was a bit worried that it would hurt his incision, but he was pleasantly surprised that it didn’t bug him at all. He had one more medicine to take, which was my fault because when I was giving it to him, it squirted out too fast and didn’t make it in his mouth.  Mom fail.  Shane told him if he took it he could look at a gift one of his colleagues had sent for Asher.  It was a really fun motorcycle that he could put together, and he had fun doing that and it was a nice distraction from yucky medicine. 

   

You Tube videos and popsicles for the win!

   

He then wanted to go back down to the garden and blow some bubbles.  We had a great time down at the garden. Asher blew some bubbles, and he wanted Shane and I to also. He had fun watching them float away, popping them, and trying to see which one lasted the longest.

   

This evening, Shane went home to be with the boys at a father/son activity. Asher wanted me to play some Mario with him, and we were in the middle of a level when they came in to do his pleural caths. We convinced him to keep on playing, and he didn’t even scream this time. He only whimpered a bit as we turned him from one side to the other.

 

After several rounds of Mario 3D world (of which I am sure clueless at!), I asked him if he wanted to work on his Lego firetruck some more. He said yes, but then said, “Mom, can I just go to sleep now? I’m tired. Will you sleep by me?” Of course, sweet boy. Of course.

Fontan Surgery Day 3: The Good and the Bad

Shane spent the night up with Asher last night, and he had a relatively good night, or at least as much as can be expected when you have to be woken up to take medicine and have your vital signs checked and your pleural caths emptied. He woke up this morning and wanted to walk himself to the bathroom, so that was a good sign.

By the time I came up, he had eaten a tiny bit of breakfast, and he was feeling pretty good. We read a few books, and then he watched some shows while we met with the nutritionist. She went over Asher’s nutrition plan for the next six weeks, which is basically a high protein/low-fat diet. The toughest part is that he is supposed to have 15g or less of fat per day, so we will really have to watch what he eats, avoiding things like cheese, treats and pastries, buttery dishes, etc.  Just after that, someone from child life came by for music therapy.  She gave Asher some drums to play, and she sang some songs like “The Wheels on the Bus” and “Old Mcdonald” while he played along on his drums.  He loved it!

 

They wheeled a Wii-U into his room, and he was excited to race Shane in some rounds of Mario Kart. He ate some lunch (just a few bits of chicken and a few bites of yogurt), and by then he was pretty worn out. He took a nice nap and was able to get some rest.

 

When he woke up though, he was not happy. He couldn’t get comfortable, and didn’t want to try and do anything that might distract him. He also had to go to the bathroom but didn’t want to. The nurse came in and we got him to the bathroom, but then she had to empty his pleural caths and he was already a bit worked up. When he was done, she gave him some oxycodone, but by this point, he was done and didn’t want to take it. I talked him into drinking some, but then he tried to spit some out, started coughing, and then threw up all over everything – his bed, his dressings, his IV, and even in the cords from his central line. It was a mess. She got him all cleaned up and pulled out his IV, feeling it was too hard to clean out the throw up without leaving chance for infection. A couple of hours later, once his cardiologist approved it, they took out the central line. Maybe that was his plan all along! He thought if he threw up on everything maybe they would take some of the stuff out of him.

 

After all of this, he was worn out, and he fell back asleep for awhile. He woke up just as my mom brought the kids up to visit him. I think it was just what he needed! He was happy to see them, and wanted each of the boys to take turns racing him in Mario Kart. He chatted happily with them, and we saw some smiles again on his face.

     

After they left, he felt brave enough to move to the wagon and go out for a ride. We took him to the play room, and he played with the trains and a few other toys. He then wanted to go see the garden, an outdoor patio area on the third floor. We took him down there, and he wanted to get out and sit on Shane’s lap for a bit. It felt nice out there in the evening, a perfect spring evening. He came back in and ate some spaghetti for dinner, and since then has been happily playing Wii with me or with Shane.

           

I sure wish I could take away this pain from Asher, that I could take his place through all of this. It is no fun to watch him have to go through all of this and to see him scared or in pain. I can distinctly remember hearing Sister Carole M. Stephens talk at the Women’s session of conference in October talking about the Master Healer. She tells a story about a young woman named Josie who suffers from bipolar disorder. One day, when she was having one of her days of deepest darkness, when she was at the worst of her mental anguish, her mother sat over her and whispered over and over, “I would do anything to take this from you.” I know just how that mom felt! However, Josie, in the moment when she was convinced she couldn’t take anymore, she says, “A transcendent and wonderful power suddenly overtook my body. Then, with a ‘strength beyond my own,’¹⁴ I declared to my mom with great conviction seven life-changing words in response to her repeated desire to bear my pain. I said, ‘You don’t have to; Someone already has.’” I know that Jesus Christ can not only comfort and sustain me through this, but that he comforts and sustains Asher as well, and I hope that through this trial throughout his life, he will be blessed to understand the power of the Savior’s atonement for him personally. We sure love this boy and are constantly amazed and overwhelmed at his courage and strength through it all.