3 cont...

I don't think anyone could have prepared us for the amount of sadness Lucas is feeling. I never expected such a huge difference in his emotional state. As I have mentioned in previous posts, yesterday and last night were very busy. Lots of lines being pulled, tugging, pulling, dressing changes, 2 IVs infiltrated, central line being pulled, constant vital signs and lung auscultations, not to mention the extreme constipation he is enduring...apparently it is all adding up. I think he feels 100% out of control...and he is almost 3..the age where control and decisions are very important. People walk into his room, do things to him without warning him and act like it is no biggie. Well, let me tell you, it is a biggie.

He got moved to the floor this afternoon (see he is a stud) but before doing so a nurse walked into his room, started unplugging everything, moving everything, getting him ready to move, not even really acknowledging Lucas (which would be no biggie to you or I) well we could see in Lucas' eyes he was nervous.. like what is this person going to do to me now. Then we told him that he has been such a big and brave boy and is doing so well that we get to get out of the ICU..he proceeded into a full meltdown. Screaming.".Don't move me.. I don't want to go, don't do it". He feels like he has no control over anything. It is absolutely breaking our hearts. I can't see my son like this.

When we finally got up to the floor, he got put into a room with 4 other babies..it was the only space they had left. Remember how hard we worked a few days ago to get him out of the baby pod. Well, we are now back to square one. Lucas wouldn't even look at me when we got up there. He seems so intensely sad right now. I think yesterday was too much too fast.

We proceeded to have the child life specialist paged. She saw him after his cath a few weeks ago and they sort of bonded. He just happen to be sleeping when she got there  (he hadn't slept since 3am last night) so she is going to come back. He needs a friend. Someone who's not going to poke, prod, or move him. She said maybe in the next day or so we can head over to the pre-school or play center and have some fun. Make him feel like he is still a 3 year old little boy.

I just lost it when we got to the floor. I have held it together pretty well this whole time. But, my son is not even 3 full days post open heart surgery..give the boy some slack. Not to mention I have so much guilt about not getting to spend enough time with Claire. I am feeling pretty torn, not to mention tired.

Lucas is doing amazing, I just wish he felt amazing. It is incredibly hard to see him like this.

I think once he "gets things moving a little better" he will feel better. He is so backed up, but just cries in pain. We have tried stool softeners and suppositories. And nothing is fully helping. I have heard that the way the blood flow is changed with the Fontan it can cause some constipation. The bottom half of the body is adjusting to the new blood flow. I will spare the details, but he did go a bit yesterday and I felt like we should have been in the Labor and delivery unit...

I can't help but cry when I think about the change in his attitude, just this afternoon he won't look at anybody, he answers most questions with a head nod instead of words. I pray he is feeling better and can progress enough in the next few days to start getting his chest tubes out. I think when that happens he can move more and get up and start feeling a bit more normal.

We want our feisty, stubborn, lovey boy back!