Full Day in ICU

It was a long day at the hospital. The clocks seemed meaningless. I measured the passage of time through shift-changes, the checking of monitors and Jarrett's milestones. The goals on his whiteboard for today were:

1. Arterial line out

2. Out of bed

He managed to accomplish both of those!

He cried once today, early in the morning when he woke up and needed to go potty. He wanted to use the big boy potty and it was really hard to get him to understand that it was okay to use the catheter. His nighttime nurse, Jaime, was so good and helped us to get that out quickly so that he could be more in control of himself again.

He was also very brave towards the end of the night shift when Jaime and another nurse put a new IV in him. (He'd lost one yesterday when he struggled coming out of the anesthetic.) He barely flinched and was given a new toy car for his bravery.

He is still keeping a watchful eye over Candy Cane and the stress ball from Alan's family has been important here, too. Here are these toys, never far from reach:

He started drinking juice and water early in the morning. He chose a blue Popsicle later in the morning:

Mom and Aunt Terri brought Zephyr as far as the cafeteria today so that I could feed him. The process went smoothly, and we think his exposure to RSV is minimal since he doesn't leave our arms the entire time he's in the hospital. He fell asleep nursing and I got to hold him for a while. Aunt Terri, Mom, Gramma and Dad are doing such a good job taking care of him that I don't worry about him much, but I do miss him!

Most of the time, Jarrett wants me to be with him. He wants me to sleep with him or hold him or sit on my lap. After he got his arterial line out, those things became more of a possibility. Here we are resting before he got his A-line out:

(Aunt Terri took these pictures that have me in them.) He was uncomfortable but brave while they were removing his arterial line. We ask over and over if he'd like to watch a movie for a distraction, but he hasn't wanted to--not even his favorite, "Mater and the Ghost Light." Since movies were out, I sang all the silly songs I could think of while they were removing the tube. That helped keep him distracted:

Aunt Terri got a variety of good angles:

He now had more room in his hands to hold his new cars:

His bed is not the most comfortable for him. He wants to sit up, but often ends up sliding down. For the next 6 weeks or so, I will not be able to lift him by his armpits to keep his healing incision safe. His nurse, Staci, showed me how to lift him by scooping him up by his bottom:

I know he looks uncomfortable in these pictures. He struggles to find a position that feels good. The nurses are very good about staying on top of his pain medication, so I don't think he's usually hurting too bad. It's just uncomfortable!

The nurses and doctors wanted him to sit and stand today. Nurse Staci helped move him to a chair. This was very hard for Jarrett--he didn't really want to do it, but stuck with us as we tried it:

At least this way it was easier for him to play with some toys:

He wanted me to pretend to juggle (I just had the one ball):

Holding up Candy Cane for a picture:

Matt joined us for a picture:

He wanted me to hold him. It took a bit of maneuvering, but I was able to get him safely on my lap:

Matt struggles with knowing what to do for Jarrett. Jarrett is so insistent on having me do things, that Matt often feels displaced. He is the one, though, who got Jarrett to say, "Do it again!" when he played silly games with the pillows. His ability to cheer Jarrett up is essential!

The staff also wanted Jarrett to walk today. He didn't want to and told Nurse Staci that he was scared to walk. He wanted me to carry him or he wanted to ride in the wagon. We had to be encouragingly insistent with him. I held his hands while he walked to help support him. We walked out to the nurses' station where he found the treasure chest. (Matt took over the camera for me.):

The chest was filled with fun toys--not trinkets. Jarrett chose 2 Hot Wheels cars:

Nurse Staci convinced him to walk a little further to see out the big window. They're doing construction not far from the hospital, which was fun for him to see:

Here he is taking it in:

He slept some more, during which time I got 16 minutes in the workout room over at the hotel and a little time with Zephyr! When I returned, he wanted to try walking again, this time to see the 3D fish pictures on the wall. Half way there, he changed his mind and decided he'd rather go back to the treasure chest. Here he is walking (photo courtesy of Mom):

We liked the sunflowers and windmills etched on the glass doors to each of the patient rooms--they remind us of being on the farm:

He started to get really tired before we got to the treasure chest, so Nurse Staci moved it closer for him!

This time he chose a mini-Lego set and a ball launcher!

The treasure chest was such a good idea to get him moving! I can't wait until we come back for a check up so we can donate some toys for the treasure chest!

He and I worked on building his Lego bulldozer when we got back to the room:

Jarrett pushed the wheels on at the end:

After the evening shift-change, I went downstairs to meet Zephyr and feed him. Mom, Dad, Gramma and Aunt Terri visited Jarrett while Matt got a shower. Here's Mom helping Jarrett:

And Dad, too:

You'll notice in the above picture that he's got his legs wrapped around his "doctor pillow." Before surgery, I was wondering what his sensory issues would look like in the hospital. I think that I was seeing some of his sensory-seeking tonight. Usually, he wants to touch things with his hands, but since his hands have a lot of tubes attached to them right now, I was noticing that he was rubbing his feet against soft things. To help him get what he needed sensory-wise, I rubbed his feet and legs, first with the pillow, then just with my hands. He said it felt good and certainly didn't pull away from it! I put some socks on his feet, which I think might help with the sensory stuff.

He is resting reasonable comfortably right now. His room is the second to the last in a row of 6 to 8 rooms. Every time I walk by the other rooms, I say a prayer for those patients. I don't know their issues, of course--they range from tiny babies to big kids. I do know, though, what Jarrett is going through and pray their journeys will result in good outcomes as we have every reason to believe Jarrett's will!

We were blessed today in that, although they talked a lot about giving him some blood, they did not end up needing to do that! Tomorrow, he should be able to take out a couple more tubes, which will make him a lot more comfortable. Also, he should be moving up to the Progressive Care Unit tomorrow!

Moving to PCU makes me feel excited and a little scared. I'm excited, of course, that he's improving, but I'm also scared about taking him home. He seems so fragile right now. I'm worried I won't know what to do for him when he hurts. When the time comes, though, the nurses will arm me with enough knowledge to take good care of Jarrett at home. We'll get there!