Tuesday, March 18, 2008
Here are some of our favorite pictures from the last month......
Enjoy and Happy Spring!!
Monday, March 17, 2008
Friday, March 7, 2008
Wednesday, March 5, 2008
Daniel's esophagus did narrow a bit but the Dr. was totally ok with it and was still happy with Daniel's progress. So we are pretty happy!
So, we also got a little bored waiting for our surgery time so we measured Daniel. (I know - poor kid!) According to the hospital scale he is weighting in at 18 pounds but that was with clothes on and before he pooped three times. Mind you we were only waiting for an hour and a half. His feet measures 3 inches and his head is 44 cm around. I said we were bored!!
Once we get home on Friday we will post some "stupid" facts from our trips since January. Something to look forward too...... Until then!!
Tuesday, March 4, 2008
So here's our moment - as I was getting ready to pull out the stuff for Daniel's 5:00 feeding I quickly realized that I left his food and G-Tube in our frig in Mahwah. Now it wouldn't have been a big deal but we were about two and a half hours away from home. Thus an "Oh Shit" moment. Luckily the NICU nurses provided us with all the necessary supplies and the crisis was adverted. Though we did need to stop for bottles. I was so hoping I would not need to crack into this bag but apparently I am not the best packer in the world - I also forgot socks for me for the rest of the week.
Despite my lack of brain power - the Comfort Inn in New Stanton, PA thinks we are pretty special. Upon arrival this evening we found out we were selected as "Guests of the Day." What did we get - a parking space right in front. How funny is this....
Tomorrow features Daniel's last dilation!!! YEAH!!! Until tomorrow....
Monday, March 3, 2008
After a healthy and uneventful pregnancy, Daniel Duker was born on May 18, 2007 at 38 weeks weighing in at five pounds, four ounces. Immediately after his birth Daniel was taken to the NICU for observation. This would be the beginning of the journey to determine what exactly was wrong. The Doctors and nurses instinctively knew that something was not quite right, but needed to determine exactly what that was.
Approximately 1 baby in 4,500 is born with some form of TEF. Nobody knows exactly what causes them and research has shown that TEF occur within the 6th week of development and may be the result of a defect in three chromosomes. They are not normally detectable through ultrasound and are usually diagnosed during the first few weeks of life. The only correction for this birth defect is surgical repair.
Daniel’s first surgery was May 25th - exactly one week after he was born. Initial postoperative results appeared promising and it seemed as if Daniel was doing well. However, one week later, on June 7th, he developed an esophageal leakage and was rushed back to the OR for a second TE repair. Postoperatively he was intubated and maintained on a heavy morphine sedation to keep him immobilized.
Again, within the week there was esophageal drainage noted in the neck wound and on June 18th, Daniel was taken back to the OR for a tracheal repair of the bronchial stump and narrowing in his esophagus and trachea. During his hospital stay Daniel developed a significant stridor (narrowing of the trachea) and respiratory distress. On June 20th, it was determined that Daniel's right vocal cord was paralyzed and he had decreased movement in his left vocal cord. In addition, he was aspirating into his lungs due to his inability to swallow.
Given Daniel's persistent respiratory distress, his vocal cord paralysis, and the inability to feed, he underwent a tracheotomy along with the insertion of a GI tube into his stomach on July 3rd.
This time his postoperative recovery went well and he was released from the hospital on July 23rd – after 64 days in the NICU.
Initially there was hope that Daniel’s vocal cords would come back on their own, but it has now been determined that they will not. With this knowledge we began to do some extensive research, undergoing additional testing, and traveling to specialists all over the area. After discussions with the Doctors at the Morgan Stanley Children’s Hospital at Columbia Presbyterian in New York, Children’s Hospital of Philadelphia (CHOP) and Cincinnati Children’s Hospital Medical Center, it was decided that the best option for Daniel was to travel to Cincinnati Children’s Hospital Medical Center and be seen by their world renowned Aerodigestive and Sleep Clinic Team.
After additional testing and review of the case, the team of Doctors determined that Daniel’s airway could be fixed surgically and that they would be able to remove his trach. They also believe that with time and therapy Daniel will be able to breathe, speak, and swallow normally.
The only problem was that his esophagus was narrowed and would need to be stretched before airway surgery could be performed. Since January, we have been traveling to Cincinnati Children’s Hospital every two weeks so the Doctors could perform procedures to stretch Daniel’s esophagus. As of February 20, the Doctors were pleased with his progress and were ready to recommend that Daniel move onto airway surgery.
The recommendation from the Doctors in Cincinnati to repair Daniel’s airway is Single Stage Largngotrachoplasty Reconstruction (SSLTP). SSLTP is a surgery in which the airway is made larger by placing a graft in the area that is narrowed. Most grafts are made of ear cartilage, thyroid cartilage, or rib cartilage. The Doctors have stated that the graft will be a rib graft which will be placed in the back of Daniel’s airway thus opening up his airway. Since Daniel has a tracheotomy tube, the tracheotomy tube will come out during the surgery and the hole (also known as a stoma) will be closed, making him trach-free.
There will be a horizontal incision in Daniel’s neck where the surgery will be done. Since rib cartilage is expected to be used, there will be a small incision made in his chest as well. A breathing tube (also known as an endotracheal tube or ETT) will be in place through Daniel’s nose after the surgery with the purpose of holding the airway and graft in place while it heals and preventing it from shrinking back down. It is expected that Daniel will have his ETT for a week to 10 days. The main surgery, which is scheduled for April 21st, is followed by a series of scopes (Microlaryngoscopy and Bronchoscopy) in the operating room to check that the airway is healing. It is expected that Daniel will be in the hospital for approximately one month.
DANIEL'S VOICE is a non profit foundation that was started by friends to help defray medical costs that are not covered by insurance, lodging for the hospitalization period, and any additional home health care that may be required upon his release or return trip home.
Any monies not utilized to support DANIEL'S VOICE will be donated to the Ronald McDonald House which offers housing for families and their children who are seeking medical treatments.
To make a contribution to DANIEL'S VOICE, please make the check payable to DANIEL'S VOICE and send it to:
C/O Claire Mandel
59 North Spruce Street
Ramsey, New Jersey 07446