Sunday in the Hospital

These days in the hospital are all starting to blend together.  Today was Sunday, so Shane stayed home and went to church and his meetings, and then Landon had a piano recital, so he didn’t come up until this evening with my mom and the kids.  Asher likes a lot of attention, wanting me to play wii with him, read him books, make Lego sets, and play games.  We spent some time in the play room, and we figured out how to tie his JP drains to his pajama pants, and now he wants to walk around a ton more.  I think he just felt like to much stuff was hanging from him.  He did some pattern pictures while I read a bit from the Ensign.  We also finished his fire truck Lego.  I was amazed at how he sat and followed along to assemble each piece.

       

After lunch, Jake and Stacey came up with their kids.  He was a bit cranky when they first walked in, I think because he is embarrassed or something about his tubes or being in the hospital.  He quickly loosened up though and had fun showing them his hospital room and his bubble-blowing spot in the garden.

   

The surgeon’s P.A. came in today too and said they were going to leave Asher’s JP drains at least one more day.  Those are the central drains that drain to a little bulb.  The nurses don’t have to come pull out the fluid with a syringe like they do the pleural caths, but they are more annoying in other ways because they bug him when he walks around or moves around in bed.  He also said that there is a good chance that we would go home with the pleural caths, which we knew.  I asked him how long typically they can take to dry up, and what would be the longer range of that.  He said he’s seen a month as fairly normal, and even up to three months.  I can’t imagine having to empty those for three months!  He said typically those are cases where the kid’s heart wasn’t as healthy going into surgery, so he would expect Asher to be more in the two to three week range, so we are hopeful it will be more like that, but it’s also good to have a realistic understanding of how long it could be.  He said making sure Asher is up and moving around helps, as well as following the high protein/low fat diet.  We are praying they dry up sooner rather than later!

After a nap, Dayl and Carter came up, and they brought up a book from the primary that all the kids had signed.  Asher loved looking at all the signatures, and he was excited about the book also.  Asher was once again really shy around visitors, and he wouldn’t talk to Carter or anything, but by the end he was starting to warm up and talk to his best buddy.  We were feeling a little stir crazy (or I should say I was at least), so we went out on a walk just around the floor, and Asher liked looking out the huge windows at “Oregon” he kept saying.  There is a pretty good view up there!

 

We Face Timed with Grandma and Grandpa Malan after, and Asher again was super shy.  He didn’t want me to show him on the camera, and he said he would only listen, but when Grandpa started making funny faces, he had to join in and make some back to him and that loosened him up to show his face on the camera.  This evening, after Landon’s piano recital, Shane and my mom brought all the kids up, and we played in the playroom a bit and then spent some time visiting in the garden.  I can already see Asher wanting to do more, and I felt like I was following him around the whole time reminding him not to run or to over do it.  It’s hard when you have three big brothers you want to keep up with!  Asher told me today that he can’t wait to be home with his brothers.  Me too bud. 

We have been lucky the past three days to have Meme as our nurse.  She is so sweet and patient with Asher, and loves him even when he is cranky.  When she first started with him, he had really developed a fear of the nurses, and anytime they would walk in the room, he would start to cry.  After three days with Meme, he is much calmer around them.  Meme explains really well what she is going to do, she entertains him and laughs, and she talks to him and makes him feel important.  She lets him scan his name badge for his meds, and she brings her nurse friend Jess when they have to drain his pleural caths, and the two of them joke and laugh and distract Asher from the discomfort of the pulling.  He calls Meme and Jess his nurse friends, and while I hope we still aren’t here on Wednesday, we would be happy to have Meme again when she is back on Wednesday if we are.

   

Asher just finished his 10 p.m. round of vitals, medicine, and pleural cath drains, and he is resting in his bed listening to piano primary songs as he falls asleep.  We feel so blessed at how well he is doing, and at how much energy and strength he is getting back each day. 

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.