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.

Graysen Awake

Graysen has done great all day long. Lee and I enjoy seeing him awake. He even started to eat this afternoon.

Good Progress

Lee and I visited Graysen this morning. He is doing great!!! He is off the ventilator, the fever is gone, and the bleeding is getting better. He woke up for about 20 minutes. He was groggy but made eye contact and held our hands. It was wonderful to see him awake. The doctors do not have any concerns for him. He is making a speedy recovery, and we feel blessed that all has gone well. We will post pictures this evening.

Last Night's Visit

Lee and I visited Graysen last night. He is doing very well, and remains stable. His heart rate and blood pressure are doing well. He is on several medications, including ones to help the heart squeeze and control blood pressure. Those are normal and give his heart some help while it recovers.

The only two concerns at this time are his bleeding and he has a fever. They are keeping a close eye on the bleeding since he bled in the OR more than expected. The fever is a result of going on the heart-lung bypass machine twice. Each time the child is put on it, it is stressful for the body. Going on it twice makes it more difficult on his body. As of last night, they gave him Tylenol for the fever, and were discussing putting him on steroids to help. We left before the fever went down and before they made the decision about steroids. Graysen did go into SVT rhythm in surgery two times. The first time, he came out of it on his own. The second time, they had to help him using electricity. The chances of SVT rhythm increase with a fever. Hopefully, we will go in this morning and his fever will be gone and his bleeding will be reduced.

He started to wiggle last night and was showing signs of coming out of anesthesia. It was good to see him move. They were not ready for him to wake up, so if he did, they would have sedated him. We are hoping that they will let him wake up today. There are three criteria that he has to meet before being allowed to wake up. First, he has to take spontaneous breaths on his own and the ventilator rate needs to be at 10. It was at 15 last night, which is making progress towards 10. He needs to complete a CPAP trial, which is where they let him breath on his own for 30 minutes with a respiratory therapist. The last criteria is that they would like to see his bleeding reduced from its current level.

Overall, he is doing wonderful! He is tolerating the surgery really well and we do not anticipate any roadblocks to his recovery. It was really neat to see him last night. He is pink now and looks a lot more like Caleb. He has Caleb's skin tone now, which is different to see. Before, Graysen had a dingy skin tone and felt clammy to the touch. Now he looks completely pink and feels normal. It is great to see him this way.

The stuffed animal in the picture is named Dots. Lee and I bought him for Graysen to comfort him during this surgery. So far, Graysen has received one stuffed animal per hospitalization. We almost missed getting him one for his July hospitalization, but thankfully the 3 AM visitor brought him Mystic.

Hopefully we will get to see him awake today.

Transfering to the PCICU

The surgeon just came and spoke to Lee and I. The surgery has ended and they are transfering Graysen to the PCICU right now. We will be allowed to see him at 3:45 PM, so we are just waiting for them to move him.

The surgery went well. He is doing "fine." The Rastelli (baffle, shunt, and valve) part of the surgery went well. When the opened him up, they found that the artery going to the left lung was more narrow than anticipated, and the surgeon had to do a patch there. The reason that he had to go back on the heart-lung bypass machine for a second time was that there was a bleed near the left pulminary artery. They stopped the bleed, and he is stable.

The surgeon said that he does not have any additional concerns for Graysen at this time. They will have to watch the bleeding very carefully the next few hours. That is his main concern.

We will find out more information when we go into visit him. The pediatric cardiologist will speak to us on how Graysen is doing. The surgeon's job is over. Graysen is now turned over the pediatric cardiologist, whose job is to keep him stable, manage his recovery, and deal with any unexpected issues.

The good news is that Graysen's O2 saturation is reading 100% for the first time in his life! We can't wait to see our little boy with so much oxygen. Based on what I have seen with 70% oxygen, I think that he is going to be a handful with 100%!!!

Seventh Update

From the update pager at 2:40 p.m.:

"hey there, great news. Graysen is on his way over the PCICU now. Surgery is over. Please stay in the waiting area and Dr. Bradley will be over to talk with you!"

Sixth Update

From the update pager at 2:08 p.m.:

"things are going well in the OR. they are now back off heart lung bypass and Graysen continues to do well and remain stable. They will now take some time to take care of any bleeding,which is normal. I will update you again in an hour!"

Fifth Update

From the update pager at 1:16 p.m.:

"hey there, i wanted to let you now they had to go back on heart lung bypass to do a little more work. This is something we have to do sometimes. Graysen remains very stable and continues to do well. I will update you in an hour."

Fourth Update

From the update pager at 12:06 p.m.:

"Hey there, everything continues to go well in the OR. Graysen remains very stable. They should be getting ready to come off heart lung bypass shortly! Will send another update in an hour."

Third Update

From the update pager at 11:17 a.m.:

"hey there, they are in the rewarming phase of the operation, which means we are about 75% of the way there, graysen remains stable, will send another update in an hour..."

Second Update

From the update pager at 10:15 a.m.:

"hey there, forgive me for being a few minutes late with the update, they are working away and graysen remains very stable, will send another update in an hour..."

First Update

From the update pager at 9:07 a.m.:

"...all is going well in the OR, started on time, graysen is very stable and doing well. will send hourly updates until they are finished..."

Surgery Day

We handed off Graysen to the anesthesiologists at about 6:30 this morning. They gave him a mild sedative to relax him, bundled him into a warm blanket, and took him back to surgery. Graysen was oblivious to it all, probably unaware that he had more in store for him than the usual poking and prodding that he's used to from doctors.

We had to get up at 3:30 to get ready to go to MUSC, so we're a bit tired. We ate some breakfast in the MUSC cafeteria and have been trying to entertain ourselves sitting in the PCICU waiting room.

We were given a pager with which the surgical staff will send us updates about the progress of the surgery. We plan to share the information here as it becomes available.

Pre-Op Work Up

The pre-op appointment went very well. They did an echo, took x-rays, performed an EKG, and took blood. Graysen is going into this surgery as strong and healthy as possible. They said that he looked great! His O2 sat is 71%, which is to be expected. The surgeon said that it is time for this surgery. They would not want for his O2 sat to get much lower.

We met with the surgeon, pediatric cardiologist, and anesthesiologist. Graysen will receive the Rastelli procedure (baffle in the heart to direct blood in the left ventricle to the aorta, and connect the pulmonary artery to the right ventricle), and the surgeon will replace his current shunt with a larger one. The surgery is expected to take six hours.

They do not have any concerns for Graysen, besides for the usual risks associated with this type of surgery. Lee and I were happy to hear that. I learned that the process for getting to the heart in a second surgery is harder than the first. They are going through scar tissue and it will take longer to "dissect" and get him on the heart-lung bypass machine than last time. That anticipate that it will take 1.5 hours from the time that they open him up to the time that he is on bypass. They also said that it will take longer to get him off the bypass machine because there is more bleeding in a second surgery and it will take longer to "dry up."

We have to be at the hospital at 5:30 AM, and he will be taken back to the OR around 6 AM to begin the anesthesia process. They will start the actual surgery at 7:30 AM. We will receive pages every 1.5-2 hours regarding the status of the operation. They plan to send the first page at 9 AM.

We received very good news today and do not have any reason to believe that the surgery will not be a success. Thank you for your thoughts and prayers. They are a comfort to us and Graysen. He will continue to need them as the next few days will be rough for the little guy.

Caleb at the Taylor's House

This picture was sent to me by Aunt Kim. It looks like Caleb is settling into life at the Taylor's house. I am pretty sure that he is enjoying lots of treats and playing with other children.

Lee and I arrived in Charleston. We had a nice dinner with our hosts, and plan to spend the rest of the evening relaxing. We have to be at MUSC at 9 AM tomorrow morning for Graysen's pre-op work-up. Tomorrow will involve imaging Graysen's heart, doing blood work, running tests, meeting with the surgeon, and signing consent forms. The next 48 hours will be busy for us. We should be able to settle into a routine by Thursday.

Getting Ready for Charleston

We have been spending today getting ready to go to Charleston. We are leaving tomorrow. Caleb helped pack his suitcase for Aunt Kim's house. He knows that he will be staying there for a little while, and that Graysen is going to the hospital to have his heart fixed. Caleb loves spending time with the Taylors, and always has a lot of fun at their house. I think that the separation will be harder on Lee and I than on Caleb.

Future Firefighters

Big Airplanes

Caleb enjoys eating lunch at the McDonald's across the street from the Charlotte airport. We have made it a habit to eat lunch there when we are in Charlotte for Graysen's helmet appointments. Sometimes we get to watch the landing patterns, and sometimes we get to watch the take off patterns. The landing patterns are more exciting than the take off patterns because they go directly above the McDonald's. The take off patterns are a little further away. My hypothesis is that the landing patterns that go over the top of the McDonald's occur after 1 PM, but I need more data points to confirm. I made Graysen's next appointment at 11:45 AM, so that we would arrive at the McDonald's around 1 PM. In any event, Caleb loves the "big airplanes," regardless of the pattern.

Little Gator

I thought that Graysen looked so cute in his Florida gator warm-up suit.  I just had to take a picture!

Halloween Playdate

Today was our last official playdate before Graysen's surgery.  Lisa and Emily came over for a Halloween-themed playdate.  The kids made Halloween crafts, ate Halloween candy, and played together.  It was a fun day.

Family Movie Night

Last night, we had our first movie night with the boys.  We watched "Nightmare Before Christmas."  Caleb loved watching the movie and eating candy.  It was a lot of fun.

Dunkin Donuts

We went to Dunkin Donuts this morning, which is one of our favorite weekend traditions.  We think that Little Gray enjoyed sitting at the table like a big boy.

Graysen Playing

Here is a video of Graysen playing. He loves to play in his exersaucer. Our week has been quiet since we are still trying to keep outside contact to a minimum. We only have one more week, and then we leave for Charleston.

Art

Caleb and I decided to do some Halloween art this evening. Caleb loves Halloween. It is really cute. However, I am concerned about one thing. I have noticed that he only calls pumpkins, "Halloween," and not by their correct name. I think that I might have confused him with all of the Halloween education that I have been giving him.

Helmet Fashion

Lee and I are having fun decorating Graysen's helmet with stickers. Our favorite stickers are the dinosaur stickers.  We are keeping our eyes open for cool stickers.  We are still on the hunt for Tennessee and Florida football stickers.  Hopefully, we will find Florida ones first!

I know it's early, ...

(This video is for my sister.)

but I couldn't wait! I decided to put up our Halloween decorations today since we will be leaving for Charleston soon. The boys, mainly Caleb, and I had a blast. I love having a son that appreciates miniature villages as much as I do!

Future Football Player

So far, Graysen has the build of a football player, and he looks like one in his new helmet. Who knows, I think that we may see him running down the field one day!

He received his helmet yesterday. He will wear it for the next 3-4 months to correct the flat spot that developed on his head.

Caleb Eating

Lee and I have been having fun with his new camera that will take time-lapse video. This is one of Caleb eating his favorite breakfast food, a cereal bar. We think it is funny how he pokes at the food, looks like he doesn't like it, and then gobbles it up.

Quiet Week

This week has been very quiet for us. We have started to limit Graysen's contact with the public, especially with popular kid-friendly locations. His surgery will be rescheduled if he gets sick in the 14 day time period preceeding the surgery. So, we are trying to be careful and limit his exposure to germs. I am enjoying spending time with the boys.

Graysen Singing