Tag Archives: Kasai

Kasai Recovery – Day 2

IMG_3169We were able to get a room at the Ronald McDonald Room here at Primary Children’s. That was so wonderful. They have queen size temperpedic beds. We slept so great but again we were up around 6 and just couldn’t go back to sleep. We showered, got ready and headed back to see the little man. When we saw him, he looked so much less swollen already! We were excited. He proceeded to pee so much throughout the day. And the difference in how swollen he looked was very obvious. We kept listening for bowel sounds and the day started with none. But by afternoon, our nurse said she could hear his bowels starting to work! We were so excited. Then came the insane amount of prayers for poop.

As we were sitting in our room, trying to stay sane with the craziness and boredom, we saw a familiar face. Shawn’s sister came by to visit us. She was so great. She helped keep our minds off of everything. While she was here, a social worker stopped by to talk to us. We weren’t opening up much but Shawn’s sister helped us start to be more honest with how we were really holding up. Pretty soon Shawn and I were both in tears. It’s really hard to be in the hospital day after day. You try to be strong so you can handle everything that the nurses and doctors are sending your way but all you want to do is cry and have someone else handle it. I just don’t feel like an adult. I kept thinking someone else would take care of it for me. Then you start building walls and becoming numb to your emotions to protect yourself. The social worker helped us break some of those walls down although they are building back up again.

I think this was one of the hardest days emotionally. While Beckett was doing so great, I was realizing that I was not. I was having a hard time processing everything. And trying to gather as much information as possible while not freaking out about everything. Knowing what our next 50 steps are but only worrying about the next step. It’s such a hard balance and will be something I have to work on for the rest of my life.

While we were talking to the social worker, Beckett started passing gas. He was acting a little uncomfortable and the gas just kept coming. Pretty soon we heard him poop! Oh man, we were elated. We were so excited about the poop that we came up with the idea to make a POO ghost. Around this time, the Child Life Specialist dropped by to check on us and so she was able to grab us some supplies to make our idea a reality. After we had made the poo ghost, we came up with Poo Points. We wrote down the names of the nurses, techs etc that helped us out. They could earn poo points for things like taking care of Becks, talking to us, answering questions or just doing something cool for us. We had so many staff at Primary’s who thought this was hilarious. Some even took pictures. And I will say that it created quite the contest between the nurses. It was a great way to laugh and take our mind off of everything that was going on.

Written by: Kimber

Advertisements

Leave a comment

Filed under Beckett's Battle

Kasai Recovery – Day 1

IMG_6638The night after surgery we were able to get a parents room right next to the PICU (Pediatric Intensive Care Unit). It was a small double bed but it was a private room away from the beeping and constant visit of the nurses. We slept really well considering. Around 5:30 am we were woken up by a Code Blue. My heart leapt into my chest. Once we heard the room number and realized it was not Beckett, we were so relieved, yet our hearts sunk knowing what was happening. Sleep did not return. We got up. I pumped (which I’ve become a pro at this week) and we got dressed and headed over to the PICU to check on our baby.

He was so puffy and completely out of it. He had a hard time focusing. It was so hard to see him like that. We asked how he did and they said he did amazing. For pain relief, he was allowed to have a dose of morphine every 2 hours. Over the past 12 hours, he had only needed 2 doses. That was amazing! Right after surgery and he barely needed anything. The nurses were telling us about how some of these Kasai babies come in with a constant morphine drip and he barely needed any. As we were in there with him we noticed that he was sucking on his tongue for comfort. He wouldn’t take the bink and he couldn’t eat but man he could suck on that tongue like crazy.

Because he was doing so great, we were actually released from the PICU around 10:30 that morning. That was awesome to be able to move up into a regular room where we had more privacy and we could actually stay in the room easier with him. This was a hard day. He just progressively got more swollen as he had the IV fluids pumped into him. His skin started getting tight and his mouth and tongue were so dry. We had to keep wetting his lips with water and applying chapstick to help with that. He was just not himself. Very sleepy and very cranky. The doctors mentioned that an important next step was for Beckett’s bowels to wake up (sounds, passing gas, bowel movement etc). The nurses continued doing vitals throughout the day and every time they would tell us that there still were no bowel sounds. That was hard to hear. I knew it would take time but they just weren’t waking up and I had this fear that they wouldn’t ever wake up. That evening we wanted to hold him again. He had been sleeping most the day so we didn’t want to bother him but finally we just wanted him. To hold and snuggle him. So we had the nurse help us and Shawn sat in the chair. He got situated and then the nurse laid Beckett in his arms. Beckett started to scream. He just screamed and cried and after 5-10 minutes of trying to console him with no luck, we put him back in bed. He stopped crying. That was so hard. Looking at Shawn’s face, seeing that feeling of rejection. Oh how it hurt. We knew he didn’t feel good but it didn’t make it any easier to not be able to hold and love on your two month old baby.

Written by: Kimber

Leave a comment

Filed under Beckett's Battle