Jacob Tollefson
TrachKid Profile
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Our son Jacob Michael Tollefson was born June 24, 1998. He was born at 25 weeks and weighed one pound two and a half ounces. He was eleven and a half inches long. He spent five and half months in the NICU at St. Paul Children's Hospital. He came home December 4, 1998. Jacob got his trach in October of 1998 due to a web in his airway. There were many attempts to extibate him but was always unsuccessful. A trach was the solution. He also got a G-tube and Nissen in November 1998 a week before he came home. Jacob also has BPD and ROP. He also had severe bronchial and tracheal malacia, which we didn't know about until April of 1999. At that time he ended up on a ventilator until October of 1999. Then he was put on CPAP until January 2000. Now he is back on heat and humidity. We are very excited to announce that Jacob is having reconstructive surgery on April 3, 2000.
Update, April, 2000 - Jacob finally came home Saturday (April 22). Over all things went well. On Friday he had to have a bronch to check his airway because after a few days the strider got bad. All the doctor could see is a stitch that could have been irritating his airway. So she clipped it. Now the strider is almost unnoticeable. It was a long hospital stay. April 3rd to April 22nd. It is so nice to have him home. We are going back in three weeks for a follow up bronch.
I guess the hardest thing over the past few weeks is the severe drug withdrawal from the Morphine and Vec. The first day they tried to extibate him on Wednesday April 12th things went bad. He was weak at first, then they reintibated him and said later in the day they would try again when the sedation wore off. So then around noon we tried again because he was looking strong and wanting to get that tube out. That lasted about two hours and then his heart rate dropped and his sat's dropped down in the 70's. So they decided to use Propofol until Friday and try again. On Friday things went smother but he was very weak and couldn't do anything until about Monday. Then he smiled and started to act like himself. He has a way to go, and doesn't walk yet but I'm sure it won't take long.
I forgot to add about five days after surgery his tube became dislodged in his nose, his heart rate went into the 40's and sat's into the 30 to 40's. I read in their notes that they gave him some chest compressions. Then they reintibated him through the mouth. This only lasted about one or two minutes. (THANK GOD). I got a phone call after this happened. I am glad that is all over with. Well I thought I would update you. It was a successful decanulation!!!!!!!
Update - May 2000: I have another update on Jacob. Thursday night (April 27) we noticed Jacob having difficultly breathing, with some strider. I called the doctor at 11:00pm because his sats started to fall and I needed to put him back on O2. We tried an epi neb and it didn't seem to help so we tried to let him sleep through the night and Friday morning we took him to the ER at Children's Hospital in St. Paul. The doctor decided she needed to do a bronch, but we had to wait until 6:00pm because Jacob had eaten. So he was admitted to the hospital. While doing to bronch she took out some more stitches on the back graph and I think she removed a small piece of scar tissue. She told us it would be best to restart the Dexamethasone and watch him in intensive care for a few days. Then on Saturday night about 6:00pm the same stuff happened with the strider and retractions, so the doctor had to come and do an emergency bronch again. She found some swelling and injected some Kenalog into the two sites that had the swelling. She also reintibuated him through the nose and said we should let him rest for a couple of days until she thinks about what we should do next. She said the surgery looks good, but he must still have some malacia in his airway. So for now it sounds like Tuesday (May 2) will be the day that she will take the tube out and let him wake up. Hopefully we will find out what the problem is.
Crystal and Kevin Tollefson
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