Day 5 - A new level of awesome

Sydney and I were late getting to the hospital. I felt bad because I didn't rush to get there and Brett missed breakfast waiting for me. I'll do better next time. It is hard knowing when it is ok to go anywhere. Many times the doctors come in first thing in the morning. Their schedule has been different here though. The general surgery team - doctors, and residents, comes in earlier than one should be awake. They teach and learn and brief us for a short time. We then wait for the attending doctor to come in. Brett left around noon and the attending doctor still had not yet come. I told Ryan that I was going to head to the cafeteria and grab a bite to eat, and then I'd hurry back up. I was gone for 15 minutes. The Dr came while I was gone. Of course.

I stepped out of the room and asked if they could have the Dr swing back around. Just when I took a bite she walked in. Strike two for me. She explained to me that they were going to remove suction from Ryan's chest tube for 24 hours and then take an X-ray of his chest. We were surprised at this news as they had told Brett earlier that he still had a leak in his lung. At any rate, this was good news and then there was even talk of us going home. This weekend. I sent Brett a message and told him that they may release us to go home - as in home to UT, not to the Ronald McDonald House. We chatted back and forth about what that meant, and felt that maybe we were rushing things. I spoke to Ryan and he said that even if we did get released from the hospital, he still wanted to stay in the area for a couple of days to make sure his pain was managed. I agreed that was a good plan.

Ryan had his best day. His pain was a 'zero' and he moved to the bathroom a few times. He was no longer attached to the wall so he was able to move a bit more. Below is the update I sent family and friends.

Update - Day 5

Today was our best day so far. The doctors came in this morning and there still showed a leak in Ryan's lung so the plan was to stay on suction with the chest tube for another day. Brett left and I ran down stairs to grab some food for lunch. When I arrived back in the room Ryan said "You'll receive a text from me in 3, 2, 1. Sure enough, the text came in and it said "I'm off suction." I had just missed the Dr - Dang! I stepped out of the room and asked if the Dr could come back around. I took a big bite of food and the Dr walked in - of course - with her group. I quickly finished my bite and she explained to me what would happen. They ordered an X-Ray and they removed the suction. They will order another X-Ray tomorrow morning. If nothing has changed, the tube will come out and we can get out of here. 

The original plan was that we would see the pulmonary doc and the surgeon on Wednesday. Later this afternoon we were visited by our bone marrow doc and the surgeon's nurse practitioner. The NP told me that she had spoken with the surgeon and the lung doc and neither of them felt like they really needed to see Ryan in clinic and that we could go home as early as this weekend. Whaaaa?!? After they left the room I asked Ryan what he would like to do. He said he wanted to stay for a couple of days to make sure he is up to sitting 13 1/2 hours in the car. It is hard to know how he will feel at this point because he still has a chest tube and those things don't feel good. At. All. I know I keep saying this, but we will likely know more tomorrow. I think we will stay here at least until Monday or Tuesday to make sure that Ryan is up for the long drive.

Ryan was able to get out of bed today and walk to the restroom. We help him hold the chest tube drain, but he is able to do everything else on his own. His appetite is still tiny. Food sounds so good to him, but by the time it gets here, he just can't bring himself to eat it. 

Ryan's funny story of the day - I was feeding him lunch because he was in an awkward position on the bed. He is hard to move so we decided I would just feed him. I placed napkins on his chest and he said in his French accent - "Ooh, I feel so fancy. It makes me want to say En Passant". I laughed and said "What does that mean?" He said, "I don't know, it is a chess term. It means in passing."

I've done a lot of reminiscing today. We've spent so much time in the hospital with Ry. Three months in Los Angeles when Ryan was a baby, 11 days at Primary Children's Hospital when Ryan was a 18 months old, 2 days at PCMC when Ryan had a lung biopsy two years ago and 5 days now. We've stayed in 3 Ronald McDonald houses. He has suffered through the pains of chemotherapy, RSV therapy, multiple IVs, dressing changes, and 2 chest tubes. Through it all, Ryan is happy. The doctors and nurses who care for Ryan love him. We had a doctor visit today who had seen Ryan every day this week. We had never met him before and he watched the progression of this stay. He lightheartedly showed Ryan every position he had been in this week. He then sat and taught us. Learning from these professionals is my most favorite thing of all hospital stays. 

I've learned when to leave the hospital and take a break. I've learned when to be an advocate for my child, and when to let it all go. I've learned to get on my knees daily and thank my Heavenly Father. So many miracles happen in the walls of these hospitals every day. You just have to find them. I still have uncertainty. I still wonder what is in store for my son, but I have learned so much from him.

Our miracle(s) for today - No suction, up walking...and talk of the 'H' word.