I would like to say this was another great day for David. He was snoozing in his swing when we arrived today, so Adam and the older kids went down to the family lounge for a snack, while I hung out with David. He woke up around the time they finished their snack – I think he had a dirty diaper, After that was changed it was time for OT. David let OT know that he did not enjoy it – but I think he does that everyday for OT. Working out is hard work.
While David was doing OT, two nephrologists (the kidney doctors) stopped by. David’s BUN reached a new record high today, which is not great, and yet his creatinine is in a normal range. They discussed various things it could be – from low perfusion, bloody stools, being too dry, and even having a lot of protein in his diet. I mentioned how we notice the trend the most when he’s NPO and on TPN, and they mentioned the TPN has quite a bit of protein in it. It’s a delicate balance because he needs it for nutrition, but apparently, his kidneys are unahppy. They will continue to monitor him. Hopefully as David’s feeds continue to increase, and his TPN decreases, we’ll see his BUN come back down to earth.
David’s lipids were stopped this morning as well, since his triglycerides were getting high. However, to maintain his fluid balance, his TPN was increased. It’s just a vicious cycle. They also decreased his diuretics so that he can retain some more fluid. His kidneys love fluid (his heart does not), so hopefully with all these changes his kidneys see a positive effect.
Apparently, GI doesn’t want to do a scope, but something else with a big name. It has something to do with contrast. His kidneys do not want another hit with contrast. Tomorrow, when the new GI doctor rotates onto service, they will try to confirm with them exactly what they want and determine whether it is feasible or not.
After OT, David took a ride in his stroller! His first stop, he needed to deliver one of his labs. After finishing that, he went to go find his siblings. For his next stop we went outside with David and we the siblings at the playground! They were so excited to see David outside and in his stroller. After showing him what they had been up to, we all went to the Endzone. I figured that David would like the drums again today – but that was a mistake. I tried letting him color a picture, but he grew bored with that. He just wanted to move, move, move. So we left the others (Eli was playing with Little People Barbie Airplane, and Anna was painting), to head back upstairs. We got David settled into his bed, and he soon fell asleep and took a 2.5 hour nap!
While David napped, we had lunch, colored, decorated some cookies, and went outside to play at the playground and then the sport court. Eli and Anna got covered in icing from the cookies – and I somewhat regretted that activity. Then I got to spend time with them outside. At the playground, Eli found Ant Becca, an ant that he grew to love, and he says loves him too. At one point he lost Ant Becca and he had a big cry about it – I feel like we have an ant farm in our future. He did find her and the tears subsided. He took her down the slide, and then lost her again a short time later. He found another bigger and faster ant which he claimed was her, but I thought it was Ant Chrissy. He kept saying that she was so crazy since she was so fast and couldn’t be caught. This lasted until he said he accidentally squished her and then we were finally able to move onto something else without tears. We then played with some balls in the sport court, before returning to David’s room and found him to be awake now.
With David being awake, Eli wanted to play with David down on the mat. It was a great idea because David loves playing with his siblings. Every time David sees them, he’s full of smiles. Eli and Anna helped David do some tummy time, and then he just got some more upright exercise. They played with him and he was on cloud nine. Eventually there was a whole dance party happening the room, and everyone was playing instruments. It may have been a little rowdy because various people stopped by to see what all the fun was about. Eventually, Eli and Anna left to go to the Endzone before it closed, while David stayed on his mat and enjoyed playing. While they were gone, David did an art project – his nurse found a cute butterfly idea for him to paint. After the kids came back, David was still enjoying his floor mat and playing with them that it made it difficult to want to leave him, even for dinner. Eli did get to help deliver labs again – he may have taken David’s nurse on a little longer route to the lab dropoff station since he claimed he remembered where it was, and turned the opposite direction. Later I remembered it was Sunday, and we have dogs at home. Every other day of the week, someone at home to take care of them in the afternoon, but Sunday they are on their own, so we needed to leave quickly so we could go home to take care of them. Those dogs have been doing so well considering their lives have been turned upside down as well.
Tomorrow, we’re hoping to see a decrease in David’s BUN and we’ll hopefully find out more about what the GI doctors actually want to see. Hopefully it’s another happy day for David – although, that only seems to happen when he’s out moving or if his siblings are near.
