Lucian's Journal

Surgery was 26 days ago...things are looking up! Fever is all but gone. Very, very low grade in late afternoon. Ventured out yesterday! Felt good to see Lucian with all his \'football\' friends! Boys were full of questions...\"are you \'stapled\' together or \'sewn\' together?\" Just to see him among his peers again was priceless! He will return to 8th grade on Wednesday for half days! It\'s a big week for him...lots of giant steps forward! He\'s exhausted today from being out for a few hours yesterday.

The first round of blood tests all came back negative!! YAY! Unfortunately we are still dealing with a low-grade (100.5) fever every day. So off to Yale we went today for another round of tests. Xray looked good. Echo looked good--fluid around the heart is all but gone! They thought about keeping him overnight for observation! Yikes...glad they decided to take blood and send us on our way home! No school tomorrow (Lucian likes that plan)! We had planned on sending Lucian back half day but doctor asked us to wait another day. So tomorrow\'s plan is to take absolutely NO MOTRIN! Doctors are puzzled by the fever and want to be sure everything is A-OK before returning to school.

Still awaiting blood test results. From what I understand, they could take up to 5 days! It\'s frustrating because we are \'spoiled\' usually by instant gratification/quick results. Anyway, Lucian is fine while Motrin is in his system. Last night we held off to give him the Motrin till dinner so he could take with food...not our best idea! He rocketed up to 101.9 and was pretty miserable. Today he is having a good day...I even took him out a bit. \'Cardiac-wise\' he is in good shape...once we get this fever thing figured out it\'s back to school!

Long, long visit at Yale. Good news...the valve is working perfectly...no leakage. And we are amazed that the right side of his heart which had been enlarged is now \'normal\' in size. The fever is worrisome though. Dr. Friedman (cardiologist) speculates that the fever is caused by one of two things: first, it could be that his immune system is reacting to inflammation related to the surgery. Secondly, they were able to see a small sac of fluid near Lucian\'s heart...this could be an infection which would explain the fever. After many blood tests and speculation as to whether they would admit him it was decided to let him come home while they awaited blood test results. The cardiologist will be in close contact with us over the next few days to monitor Lucian. Please keep him in your thoughts and prayers as we navigate around this \'bump\' in the road to recovery.

Looking forward to seeing Lucian\'s cardiologist today. It\'s hard to believe it has been two weeks since surgery. He has good days and some not \'as good\' days. Darn fever keeps coming back...yesterday he spent most of the day on the couch feverish. We look forward to speaking with Dr. Friedman today and hopefully getting some answers about the ongoing fever. Will post later.

No fever this morning! Appointment with Dr. Kopf...heart surgeon. Xray looked normal...pulmonary valve sounds good...removed stitches from chest drains. Dr. thinks Lucian is doing amazingly well. He examined the incision and said it looks great. Gave him orders not to overdo it...just relax and rest--not always an easy order for a 13-year old! Slight fever this afternoon...100.4. Lucian is in bed now sleeping after his first adventure out to the doctor today. And so...the recovery continues.

Lucian had a couple of great days...today not so great. He has been feverish (low-grade) for two days. Today he has no energy and his temperature is a bit higher. I spoke with the cardiologist\'s assistant this afternoon. We have an appointment tomorrow at 12:30 with the surgeon. The cardiologist is going to squeeze us in and take a look at things and see what\'s going on. I will sleep with one eye open tonight watching him! Please pray that everything is fine...I will post after tomorrow\'s appointment at Yale.

Today was another good day. Lucian continues to recover. It was a beautiful day and we were able to take a walk. He continues to amaze me with his strength and determination. He can have visitors now...so give a call and feel free to stop in for a short visit. We look forward to seeing everyone. Lucian probably especially looks forward to visitors because he\'s tired/bored of only seeing me, Tom, Alicia and Matt!

Lucian spent most of the day sleeping on the couch yesterday. He slept another 10 hours last night. Today he was awake all but about an hour. He watched football with Dad (JETS!), played video games with Matt and even ventured out into the yard with Matt for a bit. We removed the last bandage from the third chest drain tube. The chest incision which is about 8 inches vertically is healing well. We will visit the surgeon on Friday for a follow up and see Dr. Friedman next week. Amazingly pain is minimal...he is taking Advil and Tylenol as needed. Lucian is truly a miracle. He was put on this earth with purpose and I just know he will fulfill whatever it may be. Let the recovery continue,,,

Word just in...we are heading home today to continue Lucian\'s recovery!! We are sooooo excited! 3 days ago...almost to the hour Lucian was on the heart-lung bypass in the early stages of surgery. The doctors are ecstatic he\'s recovering so quickly! Many, many thanks for all your thoughts and prayers. I will continue to update his recovery at home. We look forward to lots of visits from Lucian\'s many friends.

One big step forward...small step back. Last chest drain out today! Yay! Nothing holding him in bed now. Spent most of the day out of bed in chair. Played cards with Alicia; watch lots of movies; and enjoying Yankee game tonight! Still in ICU...Some lung issues cropped up today...prayers, please! Pray especially for the lungs! Thanks all...we had hoped to get Lucian to answer some messages today but he wasn\'t quite up to it...maybe tomorrow.

Lucian had a fabulous night...Tom stayed with him and is taking FULL credit for his vast improvement. Today we will read Lucian all of his messages. Currently he is sitting up doing a word search. Surgeon will take the last chest drain out today. Possibly moving to regular room later today. Cardiologist just stopped in...there\'s \'chatter\' about breaking Lu out of here tomorrow!! Fingers crossed!!

As I write this Lucian is sitting in a chair almost tube/wire free! He\'s made huge strides forward today. We are hoping he will be transferred out of ICU tomorrow. Keeping our fingers crossed for a pain-free night of peaceful sleep.

Hello All! Please keep the prayers coming this way. Pain management is today\'s goal. Can\'t wait to read Lu all your messages...we are touched by all your kind messages. We will let you know when he can have visitors here at Yale and when we get home. Thanks again for your support. Tom and Bev

Lucian is out and done! The doctor said his heart looks strong and the new valve is working just fine. Right now they are setting him up in his icu room. We were briefly able to see him as they took him up the elevator. He is slowly waking up. We will be sure to tell him about all te lovely prayers, texts, and messages he has received today.

About a half an hour ago we heard that they have started to close and Lucian is almost done! We are waiting to speak with the heart surgeon, as they move him into an ICU room.

We kissed Lucian and they took him to O.R. At 8:45 a.m. As of 1:30 he was still on bypass in the O.R. And doing well. Waiting to hear he\'s done...hopefully soon! Please keep praying!

Lucian just read all your good thoughts and messages before heading off to bed. He will go into surgery tomorrow feeling your positive thoughts and prayers! It\'s a comfort knowing we have so many friends and family praying for us!

This is the area where I will keep everyone up-to-date on Lucian\'s progress. Alicia or I will update the journal daily. If you subscribe and add your e-mail address, you will receive notices of journal entries. I do not have e-mail addresses for all of Lucian\'s friends so please feel free to share this website with others who might like to follow his progress. Thanks for keeping us in your thoughts and especially your prayers!