Baby Shane

Our grandson Shane was born in Dec. of 2005. At birth he was found to have a Congenital Heart Defect known as Ebstein's Anomaly of the Tricuspid Valve (severe form), pulmonary stenosis and a hole in his heart. He was transferred to Jackson Memorial Hospital in Miami, Florida. At 4 weeks of age he underwent heart surgery and had a temporary shunt put in so that he no longer required full-time oxygen use. He will require surgery again at 6 months of age for another shunt and at 3 years old they will attempt to fix the chamber of his heart that is defective.

Update: 3/22/06: Cardiologist report was great! Shunt is working as it should.

Update: 5/04/06: Shane's oxygen stats have come down just a little but he stll continues to grow. Surgery has ben scheduled for July 6th, 2006 at Jackson Memorial Hospital in Miami to put in another shunt.

Update: Surgery has been moved up. Will have heart catherization on June 20th and open heart on June 22, 2006.

Update: 06/10/06: Shane was taken to ER last Sunday evening. They said he had a rotavirus. I took him back to his pediatrician Monday and Wednesday because infection had gone into his lungs. Went back to doctor this morning and he seems to be improving some. He will see cardiologist Monday morning to evaluate heart.. Not sure at this point if they will do surgeries on 20th and 22nd because his lungs are weak at this point.

Update: 07/05/06: Shane is scheduled for his surgeries on the 18th and 20th of this month. He is doing much better. Have incraesed his diet to include rice cereal. He goes to pediatrician Monday for 6 shots.

Update 8/8/06: We got Shane down to Jackson Memorial. He had a heart catherization on the 18th. They found an artery that was in the way and so they "coiled" it. We were told this would be common. However, we had to put off the new shunt until Sept. 5th. He continues to grow. He can roll over by himself now and enjoys being in his walker. We are working on his crawling, but he still doesn't like to be on his stomach. BY THE WAY....all of his precious red hair has fallen out and he has the biggest blue eyes and blonde hair! We wonder sometimes if we came home with the same baby!

Update: 9/8/06: Once again we had Shane ready for surgery at Jackson Memorial but he broke out in a rash. The physicians said it looked liked he may have a viral infection and didn't want to risk surgery. Surgery will be rescheduled in a couple of weeks.

Update: 9/24/06: Baby Shane has had a little set back. He was to see the cardiologist in Miami this Wednesday to set up surgery, but he became ill Friday morning. Is now on antibiotics. Saw pediatrician Saturday morning, If not better by AM we take him to ER in West Palm Beach.

SURGERY UPDATE: Baby Shane finally had surgery last week and a Bi-directional Glenn Shunt was put in his heart. He spent 7 days in the hospital and is now home where he belongs. The surgery went very well with a few complications during the recovery period. He received a couple of transfussions and had a lung deflate which is requiring special attention. Tonight he wanted to sit up and also let out a good laugh for us! His oxygen stats are not up to par yet, but it is because he still has a lot of mucus in his lungs. We are so thankful that this surgery is behind him now. He is our little miracle baby!!!

Update: 12/12/06 Baby Shane went to cardiologist today. His oxygen stats were up to 93% which AMAZED the doctor! He is doing GREAT! As it stands now, instead of having the next shunt at the age of 3, he may be able to wait until he is around 6-8 years old depending on how well he is still doing. He will see the cardiologist again in two weeks before Crystal and Craig moved to their new home in Beverly Hills, Florida. The little stinker will have his first birthday on the 29th. He is still not crawling, but he has his own way of scooting to get to where he wants to be.

Update: The kids have moved into their new home in Beverly Hills, Florida. Shane was evaluated by a cardiologist at Shands Hospital in Gainesville. He is doing very well. Will need another heart cath this June. He is trying to walk now and enjoys listening to music and dancing.

Update: 3/8/07 Shane is up and walking now. He runs out of breath easily so he will be seeing a pulmonologist to see if it as anything to do with the pulmonary stenosis. He is off his bottle in preparation for his heart cath in June. He is such a good baby. Will see his doctor again next Tuesday.

Upate: 04/4/07: Kinda a good news-bad news week. Shane is back on breathing treatments and also on medication for allergies and asthma. Will see pediatrician again text week and then has another appointment at Shands Hospital in Gainesville this month to see cardologst. Crystal lost her job last Friday. They knew she had a Special Needs Baby when they hired her, but said it was more then they expected. She is very lucky to have Craig's parents close by to help out and also Craig's grandparents are there for support.

Update: 5/6/07: Shane is scheduled to have a CT Scan of his head next week at Shands Hospital. Has been seeing his pediatrician weekly recently. He is now getting two Synagis injections each month for his lungs instead of one. His cardiologist seems to think he needs to have a third shunt (Blalock Shunt) for his heart but is willing to wait until after his next heart catherization to make the final decision. Crystal & Craig brought him down this weekend for a visit. He is such a "special joy".

Update: July 2007: Shane was recently tested for learning and motor skill disabilities. He is going to an occupational therapist twice a week now. The kids got a second opinion about the Blalock Shunt for his heart and will be putting it off for a while since his heart seems to be doing so well with his shunt now. He is going to have to have braces on his little legs but they are going to wait until he has worked on some of his other motor skill problems first and not put too much on him at one time. The therapist has recommended that he be put in a day care surrounding a few hours a week because he has become to attached to his mom and it may help him mimic other children his age.

Update: Oct, 2007: Shane had good report from cardiologist last month but came down with bad case of ear infections and asthma. Went thru 4 antibiotics and 3 injections of antibiotics. He required around the clock attention for a couple of weeks. Was able to return to his little preschool yesterday. He has started waving bye-bye and slowing adding new words to is vocabulary. The doctor has increased his Synagis injecions to three a month now for is lungs.

Update: Dec. 30, 2007: Shane had his 2nd birthday yesterday. He continues to have asthma and recurrent ear infections. Is scheduled to have tubes in his ears on the 22nd of Jan. Crystal will be having surgery on the 7th of Jan. She will not be able to pick him up for about a month. Will be a trying time for all the family. They came down for Chrismas Eve and we had a wonderful time with them. I will be going up to Beverly Hills next weekend to be there to help out during Crystal's surgery.

Update: March 2008: It's been a while since I've updated everyone on Shane, but he is doing wonderful. Had tubes in his ears and has not been sick since that time! He had the tubes put in at All Children's Hospital in St. Petersburg, Fl and they did a great job. Had some unexpected complications but all ended up going well. Seems his esophagus is scared from being on life support and it made it ard for the Anesthesiologist to do his job. He has started talking and can even count up to 10. We are expecting them tonight for a long weekend visit as he has an appointment Monday at his cardiologist in West Palm Beach for a routine checkup.

Update: March 2008: Cardiologist appointment went great! Doesn't need to see the doctor again for 4 months.

Update: May 2, 2008: Shane is getting over a very bad case of pneumonia. He had started preschool recently and doctor now advises that he not attend school anymore. He gave us all a bad scare this time as he oxygen level dropped. Doing much better tonight. Still has some cough. Back in breathing treatments for asthma.

Update: Sept. 5, 2008: The kids came down for a visit this past weekend. Shane has grown so much. He can count to 10 now and is putting little sentences together. Crystal has been talking to his cardiologist in West Palm and Miami preparing for another heart catherization next month. He still requires breathing treatments each day but as learned to do it himself.

Update: December 2008: Shane had a heart cath in October in Miami and everything went great. He does not need a third shunt at this time. He called me last night and tried to sing Jingle Bells. The kids are not going to make it here for Christmas but they will be here the week after. Can't wait to get my hands on him!

Update: Jan. 2009: Shane is now 3 years old. It's hard to believe. We enjoyed our time with him after Christmas. He tried to sing his ABC's me last night on the phone. Will see him again on Feb 7th.

Update: March 2009: Going to be meeting the Kids at Sharon's wedding on Ft. Myers Beach tonight. I've got to get my hands on Little Shane!!!

Update: March 2009: Shane saw the cardiologist today and received a very good report. Oxyeon stats were in the 90's. EKG was fine. No medications needed. Doesn't need to see doctor for 6 months!