Today was overall a good day. Cade had some visitors this morning and my sister came as well and she & I left the hospital and walked across the street to eat at Brunch Cafe. It was good to get out for just a little bit. He went down for the quick MRI around noon and did amazing. Chris said he was such a good boy and stayed so still for the test. They gave him a dose of Benadryl to help with the test, but that was it. PT came by later in the afternoon and we tried to get him to walk around the unit a little bit. He just wanted me to carry him. I asked him if it’s because his legs feel funny, or if he just doesn’t feel like walking? He said his legs felt funny. We talked with him about the importance of trying to walk little bits because he has been in the bed for so long and his body is weak. The only way we are going to get to go home is if he gets stronger by walking around and doing stuff. We convinced him to walk 5 steps and then I’d carry him back to the room. We counted, and he took a few more than 5 and actually seemed like he was getting a little sturdier with it, but then he realized he was past our compromise of 5 (I said 10, he said 1. Haha) and he quickly stopped and cried that I carry him. PT felt he was doing pretty well considering, and that it seemed to just be weakness from inactivity, not necessarily a deficit of any kind. She said we could order some out patient PT to help him and that at home, since we have stairs, we are going to have to be extra cautious and just carry him up/down the stairs until he gets his strength and balance completely back. Good thing we didn’t sell the baby gates that we just took off both sets of stairs not to long ago, excited to be done with them. He’s moving his arms and hands well, he’s had an IV in his right arm for last couple days and has impressively been feeding himself quite well with his left hand. His fine motor skills are still good as he taps in to apps on my phone with his fingers and swipes through all the pictures and videos. His favorite thing to do. All positives.
We had switched all of his meds to oral today and just as I was beaming with excitement that we had not thrown up for almost 24 hours, the zofran was due for the 1st time oral. I quickly learned that this one will HAVE to be mixed with juice. I tried the system we had down with shooting some med, chasing it with water or juice, shoot, chase, etc. until done. Well this did NOT work with the zofran. We made it no further than the 1st shoot and he gagged and vomited his entire lunch. Poor baby 😦 Once he was settled we had to still do a couple other ones, including the oral Ativan, which is like 2 drops. I pulled up a little peach juice from his lunch tray in the syringe because I was not taking chances again, and when I brought it over he was so cute- he looked at the tiny syringe and said, “no mommy, that one goes in my IV.” I explained that we don’t want to take this IV home with us, so everything now has to go in his mouth. Those ones went down much easier.
The rest of his day went well. He had a couple more visitors in the afternoon, but he and I were taking a nap (sorry Bill!) Late afternoon Rylan and Grandma got there. Ry was so cute. They smiled and played and talked. Chris went home for the night, in hopes of getting a much better night of sleep tonight than he did last night. My mom sat with Cade and ordered dinner for him while Rylan and I went up to the cafeteria and had dinner together. He was super cute, and we had to wait a while for the panini I had ordered. The man working the grill was so kind and apologetic at the wait, and as he finally handed it to me, he promised it was well worth the wait and that he made it with love and as he handed me my sandwich, he had cut it and put it together to form a heart. It made Rylan and I both smile.
We got back to the room as Cade was finishing his dinner and he was upset he didn’t have juice. Rylan was being such a great helper, so he and I had gone to get some towels and wash clothes and then went out to get him some juice and fresh water in his airplane water bottle. When we returned, I wasn’t sure I was in the same room. Cade had the rolling pin from the play dough toys we had in here and he and my mom were playing baseball with that as the bat and a soft tension squishy ball. He was throwing the ball up with his left hand and hitting it with the rolling pin. Smiling and laughing. Then he and Ry were playing it together, Ry tossing him the ball. Next I look, Cade was rolling back and forth on top his head just giggling. Then I was brushing my teeth and doing something that kept making him giggle over and over. It was a breath of fresh air to see this. Night and day. We got Cade all tucked in for bed and they left for the night. Ry so proud of himself for being such a good big brother for Cade as he whispered this in my ear. No sooner than they left, Cade threw up again. I was so bummed. Before at least it was from the Zofran. This time? Maybe the fact that he finished his lunch about 4ish, then had dinner at 7, and all the playing around and laughing could have just stirred things up to much in his belly. If that’s the case, it was worth it. To see those smiles and hear that laughter. But my heart sank for him as he filled the little basin. I just want the vomiting to stop.
I hadn’t heard anything about the MRI so I asked the nurse. He came in and said that the MRI showed a mild re-accumulation of fluid, but Dr Ruge hadn’t called back with any concern about this. They felt that if Dr Ruge was concerned he would have called regarding a change in plan or about having to put the EVD back in. The charge nurse assured us this mild accumulation can often occur and his body should just reabsorb it. I’m sure Dr Ruge will discuss this when he stops by tomorrow morning.
Now with this second episode of vomiting, due to the significant amounts of vomit, the attending on tonight and our nurse are worried that his sodium will drop and they don’t want that. So we are going to try and push Gatorade or a mix of juice and pedialyte through the night to help replenish him a bit. Hopefully this will not be a set back to the rumor that they may let us go home tomorrow! But if it is, it is. His safety, health, and healing are most important. Although Cade would disagree as he cried to me when my mom and Rylan were leaving saying through tears “I just wants to get out of here.” I cannot wait to tell him that we can go home. That it’s time to get out of here! Hopefully I can tell him that within the next couple of days.
Our Warrior Journey 