Day 12 of Treatment: Homecoming

At home playing with big sister

After nearly two weeks in the hospital Elliott is now back home!

All things considering, it was actually a pretty quite day. After receiving Tylenol for some discomfit Elliott slept through the rest of the night without incident. Kyllan stayed with Laurel last night and,  in anticipation of rounds, arrived at the hospital pretty early. Elliott napped through the morning.

All played out

During morning rounds the physician told us that Elliott looked great and would be discharged as soon as the paper work was complete.  While that was being done we took a quick tour of the oncology center where Elliott will receive his chemotherapy and the pharmacy where we will pickup his oral medications. When we got back it was time to pack up! For twelve days the hospital was our home. We slept there. We ate there. We experienced some emotional highs and lows. We formed memories that will last a lifetime. And when it was time to go, we didn't bat an eye. We said goodbye to the nurses on duty, including two of Elliott's favorites, and hit the door.

Once home Elliott cuddled with mommy for most of the afternoon. Laurel was very excited to see her little brother when she got home from daycare and immediately set of to find some toys to play with. They literally played until Elliott laid down and fell asleep right there on the mat. He completely wore himself out. Clearly we did not have any trouble getting him down for bed tonight and it does not appear he is experiencing any discomfort.

Several people have asked about ways they can help during Elliott's recovery, so I added a section to the links at the top of the page.

Day 11 of Treatment: Successful Surgery

Relaxing with Mommy after surgery

Early this morning Elliott had a planned surgery to remove his central line and to implant a port, also known as a medi-port or portacath. The port is a subcutaneous device that contains a catheter connected to a vein. It will facilitate administration of Elliott's chemo. Unlike the central line, it should also be Laurel proof. The surgery went smoothly. The oncologist, the pediatric surgeon, and several nurses have all commented on how well he responded. He did not appear to be in any pain or discomfort during the day, but I did ask that he be given a little Tylenol this evening, as he kept waking up every 10 minutes or so. He has been asleep since. It has actually been pretty quite around here. I hope the same can be said for the morning.

Thinking about all the toys he is going to play with when he gets home

Kyllan stayed with Elliott last night (Sunday night). She tells me that it was his best night of sleep since he has been in the hospital. It was a completely different story at home with big sister Laurel. We have done a lot of fun things with her over the past week and a half to distract her from the fact that things at home weren't quite the same, but now the jig is up. Last night she cried several times while asking for her mommy and insisting that Elliott was all better and could home that evening. When I told her that Elliott should be well enough to come home Tuesday, she repeatedly asked, "so we will be able to play together, right?" It warmed my heart and broke it at the same time. Kyllan is staying with her tonight and I am with Elliott. At this point I think we are all ready to get out of the hospital. The only reason we did not go home this weekend was so the port could be put in first thing Monday. I hope his recovery from surgery continues to go well so that we can go home Tuesday. I will be so happy to have everyone under one roof again.

Kyllan has mentioned it, but this is the first post I have made in a while. All of your calls, texts, emails, and comments have meant a lot to our family over the past week and a half. The continued love and support of our friends and family has given us strength in our weakest moments and we will forever be grateful that we have so many wonderful people in our lives. Thank you.

Day 2 of Treatment

Day 2

Elliott is responding well to chemotherapy. A large volume of fluid from his lungs and heart was removed over the last 24 hours. He was extubated this morning (They removed his breathing tube) and the pericardial tube has been removed. He is no longer sedated, and is becoming more and more alert every minute. We were able to hold for the first time since Wednesday this afternoon. He and Kyllan do not want to let each other go. He has been eating and drinking on his own this afternoon, but has yet to get his voice back. He still has his hair, which I have been threatening to cut for weeks. This is not how I wanted to see it go. As the medical team continues to monitor his ability to breath on his own, our goal in the next 24 hours is to have him moved from the cardiac ICU to the pediatric oncology wing. Once we are in the oncology we are going to bring his sister Laurel for a visit. They are best friends and have not seen each other since Wednesday.

Day 2

This time last week Kyllan and I were celebrating our daughter 3rd birthday with a party in the backyard and Elliott sounded his healthiest in a month.  We are overwhelmed and exhausted, but we find ourselves encouraged by Elliott's progress over the last 24 hours and all of our friends, family, and colleagues that have reached out to us. The pace of everything around should slow down once Elliott is able to be moved to oncology. Once that happens we will begin to think about the week ahead of us.