We Are Home!

The past 24 hours have been a whirlwhind. Graysen was cleared for discharge on Monday. He is doing great, and the doctors are amazed at his progress. He is the exception, not the rule. We are fortunate to have a very strong heart baby.

We picked up Caleb this afternoon from the Taylor's house. Lee and I were able to witness the sweetest scene. We were expecting Caleb to run and hug us, and not pay much attention to Graysen. Instead, Caleb ignored Lee and I and imediately sat down next to Graysen and grabbed his hand. He sat there for at least five full minutes with him, smiling and saying Graysen. We think that he understood that Graysen had to have something done to him, but wasn't sure it meant that he would get to see him again. Caleb looked very joyful that Graysen is OK and returned. I will never forget the compassion he showed.

It is Tuesday evening, and we are just getting settled. I am looking forward to getting back into a routine with the boys. I plan to take it easy this week so that Graysen can rest. However, the doctor visits never seem to end. He has to go to the pediatrician tomorrow, cardiologist Thursday, and craniologist on Monday.

Lee and I are glad that this ordeal is behind us, and we can start a normal few years with the boys. Graysen is a very strong, happy little boy. We are thankful for everyone in our lives who has helped us through this. The love and help that we have recieved made this experience easier.

Update

Graysen is doing very well. The surgeon removed Graysen's chest tube today. He has spent the day playing, and is getting back to being his old self.

Life with Uncle Allen and Aunt Kim

Caleb is enjoying his time with Uncle Allen and Aunt Kim. Here are some pictures that Kim sent.

Aunt Kim bought him a new car.

Geoffrey goes everywhere with Caleb.

Kim feeds Caleb well.

Bath Time

The nurses gave Graysen his first bath since his surgery. Lee held him while the nurses changed Graysen's bedding after the bath.

Morning Rounds

Graysen is doing very well.

The doctor does not have any concerns for him, and anticipates that Graysen will be able to go home soon. The main obstacle is that he has to have his chest tube removed before he can go home, and they have to monitor him for 24 hours after having it removed. They are not ready to remove the chest tube today. The tube is still draining more blood than his body could tolerate if the tube were not in place. Based on his weight, he can tolerate about 15 cc of drainage. He drained 25 cc in the past 24 hours. The amount becomes less and less each day, so they should be able to remove it soon.

After the tube is removed, and Graysen is stable for 24 hours, he will be allowed to finish his recovery at home.

As you can see from the picture, Graysen is not feeling very well. He has not received any morphine today, and is on a weaker narcotic (Oxycontin). Slowly, he will need to be weaned off the narcotics and onto straight Tylenol, because the side effects of the narcotics are not beneficial to his recovery. This process will start once the chest tube is removed. The tube causes pain, and he should start feeling a lot better once it is removed. They will give him a dose of morphine to remove the tube, and then he should start the process of being weaned to Tylenol.

So, the rest of the day will be spent taking care of Graysen, and helping him feel as comfortable as possible.

Step Down

The three of us have settled into our room in Step Down. Graysen is doing great. They gave him a dose of morphine this morning because they had to remove some monitoring wires which were placed inside his heart. This cause him to sleep most of the day. This evening, he woke up and drank a bottle and is now starting to play.

All that Graysen has left is the chest tube (drains blood from the area around his heart), pacing wires (in case they need to override SVT rhythm), and an IV. Graysen is still bleeding too much for them to remove the chest tube. His level of bleeding in this surgery was higher than normal, but is not a concern. It is understandable since he had a bleed in the OR, and it is his second surgery. (Bleeding levels are higher with each additional surgery.) The surgeon looked at him again today to assess the bleeding. He thinks that the chest tube may be able to be removed either Saturday or Sunday.

He is still on a lot of medication, which will slowly be weaned over the next few days. He is breathing room air, and his O2 sat is 95%. He is still retaining a lot of fluid in his body, and they anticipate that his O2 sat will be 100% on room air by the time that he leaves. Already he has made improvement, because he has been on oxygen up until today. His sats were around 90% on room air.

So, Graysen continues to get better and better each day. He has recovered faster than expected and was called the "most placid" baby in the PCICU. He never fussed, recovered quickly, and just hung out. The doctor said that the only time they saw him get excited was when they first gave him the dose of morphine this morning. They said that it turned into party time for him, and he was playing with everyone. (They were all waiting for him to go under so they could remove the wires, but instead he wanted to party.)

Graysen really is a strong baby and tolerates these surgeries very well. Lee and I plan to spend the rest of the evening relaxing, and hopefully we will be on our way home soon.

Graysen's Going to Step-Down Today!

When we arrived at the PCICU this morning, the doctor was writing orders to send Graysen to step-down. Assuming that there is an available bed in step-down, he should be transferred there sometime today. His recovery is going a lot quicker than we expected.

Graysen is very alert now, but he's quiet and tired. He just rests and looks around the PCICU. We look forward to him getting back to his energetic self soon.