Saturday, Aug. 9: Balancing life with kids

During the night I woke up at 4am to pump and then at 8am. I needed to be out of the room by 9am so I showered and moved out. Luke seemed to have an okay night but his numbers were not looking good. Though they weaned him from 100% to 30% oxygen support, his numbers were going down hill. It seemed like he couldn’t get more weaned off. A new nurse was on (Karen) and a fellow (Kristie) who explained to me that his numbers got worst. They changed the “food” fluids in hopes that his numbers change (which they did). His morning x-ray did not look as clear as it did yesterday. In fact, they got worst. Talk about another transfusion was introduced and I was again in an emotional state. Karl and Carlita showed up with breakfast and ate. Karl went to see Luke while I played with Carlita (well she played by herself but I directed the fun). I needed to pump so Karl took Carlita to see Luke. They came into the room where I was pumping and Carlita stated “ Luke is an angel”. I just teared up! So cute!


We headed home for lunch and a naptime. Carlita and I went to bed but I guess she got up and Karl and her went to the pool while I slept for 2 hours. I woke up to a nasty phone call from my mother and I got up to watch some of the Olympics. Karl and Carlita returned from the pool and we heated up some dinner and headed back to the hospital. Carlita did very well, playing while I pumped and then standing by us near Luke. She really can’t see him and didn’t want to get near him due to all the machines and wires but she did as well as she can do. She did get upset leaving with Karl because Mommy (that’s me) wasn’t leaving too. Poor little girl! I’m sure this is all overwhelming, not having me at home and being able to cuddle and play together. And poor Karl who gets no time with Luke and is taking care of Carlita and me. The man is Super daddy. I don’t even know how he’s handling all this. I just cry and have little breakdowns. He’s cried and I’m sure is having his moments but we keep strong for each other and Carlita.


I spent most of the night next to Luke. I helped Kari (the nurse) do “care” and keep track of all the numbers. He got another chest x-ray done and it was getting better regarding the clearness of his lungs. His numbers were okay but just not good enough. Most likely a transfusion will happen tomorrow. I’m getting more comfortable with this because I know it’ll help him. It seems like he’s anemic and needs a boost. I hope this does this. One week is coming up soon and I just want to hold him and feed him.