Dillon and Christie

Our sweet family and life adventures.

Day Two-The Hardest Day By FAR! Tuesday

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Devon woke up and was more himself at first, although he was hungry (he hadn’t eaten much since Sunday morning). He was sad that they were still doing vitals so often.

First we had him try walking for the first time, which is pretty hard. He walked probably 10 feet to get to a wheelchair, and I wheeled him around the hall for a little bit and we were hoping to visit the playroom just to see what they had, but they didn’t open until 8:30 am and it was only 6:45 am. This picture is of him right after he walked to it. He did a great first walk. He still had his catheter in, which he really did not like at all.
He wasn’t tired, and we had nothing better to do, so I told him we could go walk around the halls for longer and see what we could find. I grabbed the camera because I wanted to take lots of pics. Devon was starting to get sad because he just felt plain crumby. Below you’ll see him looking out the window to outside. He looked so miserable looking outside that I asked if he wanted to take a picture of the outside, so that pic follows. He loves it when we let him take pictures with our camera, so I thought it would be a good thing to cheer him up. It was really cute. I wish I could have taken a picture of him taking pictures of everything! My favorite was when he started to aim it at the ceiling, and realized he was taking a picture of the butterfly on it…I hadn’t even noticed it was there! Here are some collages of the hospital through Devon’s eyes:).

They told him when we got back that he was not allowed to eat anything except popsicles, jello, and clear liquids the whole day. He chose to eat a popsicle very first. That made him smile .

Dev’s Uncle Greg stopped by to see him and brought some books and donuts. Devon loved the new truck book, and his cousin Elise wanted her dad to bring him a book called Madeline which was about a girl who had her appendix out. Cute book. The donuts were very tempting to him. Greg was not the only person who brought food, however, and he didn’t know Dev couldn’t eat yet, so it wasn’t a big deal WHAT food was brought. The only reason I say anything about any food is because they play a big role in the days events actually…. Read on. But look! A smile!

Dillon came with some cute cards from Grandma Hurst and Carson. While Dillon was here, we walked Devon outside to see if he liked that, but he was getting sadder and sadder. I took him to the playroom hoping to cheer him up, but he just stared at everything I showed him and looked like he would cry. He was SO hungry and really wanted to eat. He was also in more pain.

So we went back to his room. But when we got there, things turned bad really quickly. Before I could get him in his room, he started to cry and say,”I don’t want to go back in there!” Later, I realized that he wanted to go out in the halls because he knew that there was food there.

Devon had the maddest/saddest hour I’ve ever seen a little kid have. Everything he did was so unlike him. A child specialist lady happened to be out in the hall when he started to yell about not going back to his room and how he wanted donuts or the food he saw in the hall, or whatever. She was trying her best skills out on him, and our nurse was trying to help as well. Seriously, I know the specialist was trying to help, but the nurse got the hint that he wanted us to all leave him alone–the other lady tried for 15 minutes to settle him down. Finally, she got the hint. He was beyond reasoning. I felt so awful, because really, at that point it was only about 10:30 am or maybe 11:00 am. He had the whole day to go without food. The nurse asked if he wanted another popsicle or jello, and he yelled, “No! I just want healthy food!” He said while waving one of his arms to the side for emphasis, that he wanted everyone to leave him alone but mommy, he said he wanted everyone to STOP TALKING TO HIM, to stop asking questions, to stop touching him, everything. So I just took him in the room and shut the door.

So it was just us. I tried to talk with him and explain that he would throw up if he ate. I tried to pray with him, reason with him, sing to him, anything I could think of. I just kept praying in my head that I could know how to help him. He was so sad. He was sobbing, just his whole body exhausted from being so upset. He’d scream at me to leave him alone, then he’d scream to me that he wanted me close to him. He wouldn’t let me put him in his bed, yet he’d scream that he wanted to be in his bed but not walk and not be carried to bed. He even threw his teddy bear at me. He was just so tired, hungry, sad, mad, so many hard emotions and things to go through all at once, for anyone, let alone a 4 year old. So eventually, I told him I would help him when he settled down. I was crying at that point from just feeling so helpless. This went on for about an hour, at least. So I sat in a chair in the room and pretended to read. He screamed and cried. I said, “Devon, I love you. I want to help you, and I know you are having a horrible day. I can’t help you unless you let me. I will help you when you are done throwing a fit.” That was hard to do, but it felt like it was all I could do at that point. And of course it made him mad, and he screamed, “Help me mom! Help me!” for about 2-3 minutes. I’m sure the nurses were ready to run in, but our nurse that day was particularly amazing, I thought. She let me handle it.

So eventually, he said he wanted to lay in his bed. So I wheeled his chair as close as I could to it, but then he didn’t want to get out and walk because it hurt, and he didn’t want me to carry him because that hurt too. So we were stuck again, him sobbing and yelling, and me just trying to get it done, but not wanting him to strain too much and hurt himself. A different nurse came in at that point and said, “How’s it going?” I just looked at her, sat on the bed, and said, “Not good!” So somehow, thankfully, she got him lifted into bed. I was very thankful. Now that he could relax a bit, hopefully he’d settle down. Goodness, I’m looking at the times on the pictures and wonder if this went on longer or if we were in the playroom longer. Not sure, except I know this whole ordeal I’ve been explaining was at least an hour.

He did settle down. Here’s a picture of how miserable he was. He told me at one point that day, “It’s been a horrible, no good day.” Ever read Alexander and the Terrible, Horrible, No Good, Very Bad Day? Great book. That’s where he got that from. I said, “You are right Devon. You have had a horrible, no good day.”

Back to after he settled down. I finally convinced him that maybe he’d feel better if he had something to drink or eat. He finally agreed to have some jello and a popsicle, but his melt-downs continued throughout the day. I had to be touching his shoulder, just right, for most of the day. So I ended up just laying in bed with him. If I let go for a second, he’d cry and say, “Touch my shoulder mom! Touch it!” If I was too soft he’d get mad and sad (those were the times I was falling asleep). But then out of the blue he would yell for me to stop touching him. Once I stopped massaging his shoulder, he said, “Mom, if I say ackles, THEN you stop.” I kind of giggled, which made him sad, but I thought it was so cute that he made up a code word. He was obviously not in the mood for laughter, and I don’t blame him one bit.

The jello wasn’t the right color, the popsicle was melting or falling off the stick and he did NOT want help. He informed me that he was going to eat ALL of the donuts, all 12, and no one else could have any. He told me that he wanted to stay there and I should go home and get him some food.

They took out his catheter, which was traumatic for him, but I was happy it was out since he complained a lot about it. But that also meant he’d have to walk more. And they were giving him fluids through his IV so that’s guaranteed peeing a lot right there.

He slept that afternoon. Dillon came after work. On a side note real quick, remember those two hellish jobs he’s on right now? They totally didn’t care about Devon being in the hospital. One of the guy’s said to him, “Well, you obviously don’t have enough time to do this job, so I’m going to hire someone else.” WHAT?! Have a heart, dude. Jerk. Sorry…it just added so much stress to the week, but thankfully our families came to the rescue. Dillon’s still on that job, by the way. It was just an absolutely sad thing that he had to be at work so much that week since the guy would have fired him if he wasn’t. And he had done so much work on the place already, he was nearly done with everything besides the baseboard!

And now, back to our story. Dillon came after work and brought some balloons and a coloring book/crayons (Transformers and Spongebob balloons), and his parents came as well with a laughing stuffed animal puppy and some gummi bears. Dev didn’t say much about the balloons until the next day, and he smiled at them and said, “I wonder why I got balloons?” He was too miserable the first day to be happy about much. Devon was happy for his visitors for about 10 minutes. While they were there, he was fine, but getting hungry again. And of course wanted the gummi bears, and whatever other food he could name. So I got him excited to order some “food”, and he was stoked. But it took too long to come, and so after 15 minutes, he said, “I just want everyone to leave except mommy.” Once his food was there, he was too hungry for real food and too tired to care, so he didn’t eat any of it. I had to lay down again to calm him down and that was when he said through tears, “Next time I’m in the hospital, you should remember a bowl, some milk, and cereal!”

He fell asleep at about 7:30 pm, but had to go pee not long after that. It took us half an hour for him to finally pee and be back in bed. He was in so much pain because it had been a really long time since he got his catheter out, so it was the first time on his own. He was in a lot of pain from the pressure on his abdomen, he was still tired, and of course hungry. The new nurse on was Dee, who was my ultimate favorite. She helped us at just the right times and was so great. She helped me get Devon out of bed, but he flipped out and ended up on the ground, just crying so hard and saying, “Ow, ow, ow…” over and over because he really did hurt himself flailing about like that. So he sat on the floor and screamed if we tried to help him and would not stand up, so we didn’t want to try and lift him. I finally carried him to the toilet but he did the same thing and collapsed on the floor. Dee told him, “Devon, you need to stand up! You are going to really hurt yourself if you keep flinging around like that!” She left us alone because he requested her to go away (not so kindly). He wanted his daddy and he wanted food and he did not want to pee. He kept saying, “I just wanna go home mommy! I want to go home.” So there we were on the bathroom floor, me, trying to keep it together, wishing Dillon was there, but he was with the other kids. So he finally stood up to pee since it was starting to leak out anyways, and he peed just a little but screamed at the pain and wouldn’t do anymore. So I knelt down to let him stand on my knees to scoot onto the toilet since he didn’t want help getting up, so he sat there, peed a tiny bit more, and cried and cried. We said another prayer and he settled down. He finally fell forward into my arms while still on the toilet and said, “I need a hug.”

He did feel a little better from that bit of pee, and he even climbed back into bed alone. He snuggled up with Teddy, SMILED, and said, “I love you mom.” Frequently while we slept he would cry out suddenly, “Mommy, I need you! Help me! Come closer! Where are you?” Things like that. He ate some jello and drank some juice and fell asleep.
I thought the day was over! I was emotionally exhausted. Had 3-4 cries that day, even at dinner in the cafeteria while Dillon was with him. I just had a hard time when I was alone. When I was with him and needed to be strong, I mostly could besides that really hard hour earlier in the day. I wrote down, “It’s so hard because he’s so sad. He doesn’t understand and I can’t help him. He doesn’t want me, but he does. I can’t talk to him, just touch. But I feel that Heavenly Father and Jesus are close to him and helping him. A couple of our prayers together really calmed him down. Poor little Devon. He’s just so sad.”

One of my break-downs was when I talked with my sister about watching Bailey on Thursday, her b-day. I didn’t think I’d cry, but when I said, “Kiss her lots…I’m sad because you get to spend Bailey’s birthday with her and I don’t.”

We didn’t get any sleep until 4:30 am. It was a horrible night because of the gas pains. Dee warned me that it would be a hard night because of those. She said they are almost worse than the pain from the appendix. He had to pee again about 3:30 am, and again, it took about 1/2 an hour. He got in the bathroom and swayed from side to side standing up forever, just crying how he wanted to go home.

The nurse would check his vitals, and with anything they did, he’d say, “I don’t want to do _____, ever again.” (fill in the blank with whatever they have to do). After the 3:30 am bathroom break, he slept until 8 and the nurses left him alone that whole time, too:). Yea!

P.S. Carson was cute. My mom watched the other kiddos on Monday. After Carson said his prayers, he said, “Since Devon is gone, I’ll say my prayers like I’m Devon.” and proceeded to pretend he was Devon and asked that “My tummy will get better and I’ll feel better soon.” Sheila said that on Tuesday he thought 4 days was FOREVER to be able to have Devon come home and play with him again.

Comments

  3. Okay, that was a really sad post, i wanted to cry, that is so hard, he was so brave, i bet it broke your heart to see him that way..I'm so glad he's home and doing better…So scary, i wish we could have come visit him..

  11. Christie, I can't believe all that's been happening to you guys! I'm still reading your blog–I'm just awful at leaving comments!! My heart broke reading this–what a brave little boy! I know it must be awful for him and for you to have to just sit by while he recovers from it. And I'm totally going to remember this if I ever really feel I need to take Lily to the hospital for something–I always agonize over whether I should taker her to the doctor or just wait it out a little before taking her in. Hopefully the worst is over for you now. I'll keep you guys in my prayers.

  13. Wow, really a horrible, no good, very bad day! And those pictures! SO sad! It's so great you're documenting all this, though. It will be nice to read when he's a teenager and you can hold it over his head :) j/k. kind of.