Jacob Gregory Adkins
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Hello - our names are Tasha & Greg Adkins. This is our son Jacob Gregory. He was born April 26, 2001 at 26 weeks due to preeclampsia. Jacob came into this world weighing 1lb 2oz and 12 in long. At his smallest Jacob weighed 11 oz. We have had some rocky times-especially at the beginning. At every attempt to come off the vent, Jacob was either sick or did not tolerate it. In August 2001 all vent settings were low enough that he should have came off the vent with no problems. But we were unsuccessful. That's the 1st time a trach was mentioned to us. Three more tries were performed and all unsuccessful. On August 21, 2001 Jacob was trached and for the first time we actually saw our sons face. Over the next few months, we learned how to care for the trach, change it, learned all about Jacobs equipment and how to place a NG tube for night feeds.
On November 26, 2001-after a 7 month stay in the NICU-we left our nurses, now our friends and our doctors and finally came home. Jacob was on oxygen during the day and a vent at night, we also had a pulse ox and a Kangaroo pump for night feeds. In December, 2001 Jacob was back in the hospital for Hernia Repair and a one night stay. Four hernia surgeries and 16 days later, he was finally home with us again.
In February 2002 Jacob came off the vent at night and was put on oxygen 24 hours a day. In June 2002 our 1st bronch scope was performed. It was determined that Jacob had stenosis and would require reconstructive surgery. In April 2002 a new obstacle came along- Reflux. For four months our weight ranged 13 to 13-8. In August we finally broke the 13 lbs and we made it to 14-10. We are now just under 17 lbs. We are on 3 types of medicines for his reflux. It has helped but he can't seem to gain weight. Jacob has eaten all foods by mouth since January 2002. He unfortunately doesn't eat enough to gain weight-only to sustain his weight. We are trying Nutren 2.0 and adding Duocal to his solids. We are about to see a surgeon for both a feeding tube and a Nissen.
Jacob makes all kinds of noises, he blows kisses and is all around a happy baby. In June 2002 Jacob only required oxygen at night. And in December 2002, he no longer required oxygen. This makes life a lot easier. I take Jacob to his therapy sessions alone. We have never had any nursing since we left the NICU, and all of our family lives over 2 hours away. We have just learned to adapt. We do not use the pulse ox-we actually hear him at night. Jacob attends feeding therapy 2 times a week, Physical therapy 1x a week, and Occupational therapy 2x a week. Jacob loves to take baths, play in the water, and he loves to play with his toys and everyone. Jacob doesn't walk alone, but he does cruise along the wall and the furniture, crawls everywhere and pulls up on everything. He already has 16 teeth which makes us laugh. Our goal right now is to try and gain enough weigh and to stay healthy so we can have the trach removed. We have learned to be happy for the smallest of things. We are hopeful that someday soon this experience will be a distant memory.
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Our email address has changed since our last contact about Jacob. Our new address is
Update, July 2003: On March 12th, 2003, Jacob underwent surgery for a Nissen and a g-tube. What a blessing this surgery has been. He
no longer loses his feedings and I don't have to worry about what to do if he refuses to eat. Before the surgery, Jacob lost
weight and was under 16 lbs. He has started to put on weight faster that we could have
imagined. He now weighs over 20 lbs. On April 26th, we celebrated Jacob's 2nd birthday. That afternoon he began to walk without any type of encouragement and he hasn't stopped yet. He is into EVERYTHING! His eating has not improved. He is mainly living on Cheetos, goldfish crackers, french fries, cookies, and has to have a taste of whatever we are eating. The doctor and his feeding therapist assure me that this comes from his age and needing to be
independent in some way. And I have talked with other parents of 2yr olds who are also dealing with this problem.
On Monday June 16th, we visited our ENT Dr. Werkhaven. He said that Jacob was healthy enough and weighed enough to have surgery to remove his trach. So, in July we will have a bronchoscope that will determine if laser surgery will correct his airway. Or if we will have to have complete reconstructive surgery. The thought of this surgery scares us to death. We would love to hear from parents who have had to deal with this type of surgery.
Update, March 2004: On August 19th, 2003 Jacob under went his LTP surgery. His airway was only 1 mm wide. Our ENT stated that this was as close to being a complete closure as you could get. For 7 days we stared at our son waiting for the day for his to be taken off the paralyzing meds and the vent. Finally, on Wednesday August 26th, Jacob was allowed to wake up--without a trach and with a 12mm wide airway. He did have a little difficulty breathing, so he was put on a helium/oxygen mixture. Well, 3 days later he was still having trouble breathing so on Friday he was put on a bipap machine and later in the afternoon taken for a bronch. The bronch showed that his vocal cords were swelled, and the graph looked perfect. So back on the vent and on steroids for a few days to allow the swelling to come down. This was all on Friday. Saturday afternoon, Jacob had other plans. He self-extubated by coughing his vent tube out. He was put on a Oxygen tent...and by Sunday he no longer needed Oxygen!
The following Wednesday, September 2nd, we were home. The next Monday we were having a few breathing issues as I like to call them. Back to the ENT we went and we again were given steroids and within 3 days back to great breathing.
The next week on September 17th, we again were having breathing issues. They were a lot worse then before. We went back to the ENT and was put into the hospital and given breathing treatments. And the whole time Jacob was playing like nothing was wrong. That night after his 9 pm feeding, he became restless and his oxygen saturations began to drop. When we tried to put him on the oxygen he became mad and started turning a little blue. The nurse came back to our room and as she began to bag him, I was told to go to the nurses station for help. His saturations fell to 23%, and he was taken to the PICU and put on the vent. On Friday another bronch was done and it again showed swelling with his vocal cords and again the graph looked perfect. The whole time I am asking the doctor to just put the trach back in for a few weeks or even months to let the swelling go down. Our ENT did not want to do that. So, for 3 more days we stared at Jacob waiting for something to happen. On Monday he had an air leak around his tube and was extubated with no problems. We were home again that Wednesday.
The next Wednesday October 1st, we again had trouble breathing. We were given steroids, which did not help at all. On Saturday, we made our first trip to the ER. Jacob saturations were not above 89%. Breathing treatments were given but nothing helped. So, that afternoon Jacob had his trach replaced. The problem now was the graph, not his vocal cords. The graph looked to be falling in, which could mean that the area is going back to the way it was before. A biopsy of the area was taken. It has showed to be granulation tissue and a fragment of cartilage. This is hopeful news.
When he left the hospital the next day, the PICU nurses said they'd see us in the Spring at the new Children's Hospital. Vanderbilt Children's Hospital is
opening this winter and we so hoped never to see the inside of it.
Jacob is now completely back to normal. The trach was gone for about 6 weeks, which was nice. But we were constantly in the hospital or at the doctors.
On January 13th, 2004 a bronch scope was done. We do have a thin layer of scar tissue that can removed with laser surgery. He will have three laser treatments spaced 6 weeks apart. Signs of reflux came back in September, so we also had some test run for that. All of those test came back good, but Jacob was put back on Prilosec. The ENT will not do any laser treatments until that is under control. And so far so good.
Jacob is able to say a number of words now by putting his finger in his trach (Bye-Bye is his favorite, along with Mama). He is also making a lot of noises around his trach. He now knows about 30+ signs and doing more and more BIG BOY things everyday. We have started potty training and he is doing well, and he now has a big boy bed.
Hopefully, summer will bring beautiful weather and a trachless child....
Update, August 2004: On March 10th, Jacob underwent the 1st of his laser treatments for his airway. At the same time he had a hernia surgery (for those of you keeping count, this is hernia number 3...hernia surgery number 5). Both surgeries went fine. In the recovery room, we had a little trouble waking Jacob up. The week before he had a slight case of pneumonia. The surgery was not cancelled because the x-rays and cultures taken all came back good. The weeks after the speech therapist and I both noticed that Jacob was not tolerating the Passy-Muir as well as had before the surgery. Both of us started to panic a little. He coughed a lot, and turned red faced often. Almost 6 weeks after the surgery we tired it again. He did beautifully!!!! He tolerated it for more than 30 minutes (we didn't want to push it) and seemed to enjoy having it on so that he could hear his voice. He did a lot of laughing....his and our favorite sound.
On April 26th, Jacob turned 3 yrs old. We had a Hugh Wiggles party with lots of children and adults. He
received too many toys and had a good time. He still only weighs about 22 lbs and is a little more than
32 inches tall. The pulmonologist noticed a trend in Jacob's height.
He has not really gotten any taller in the last year. He wants us to see a
endochronolgist to have some test run so that we can see why he is not any taller. Of course weight is still an issue, along with eating.
On Monday May 10th, we saw a nutritionist. She and our feeding therapist are going to work together to hopefully get some weight on him by age 4.
Jacob is doing great!!! Potty training is up and down...but we are getting there. Everyone tells me that boys are the worse at it. He LOVES to go outside. He cries to go out all day long. He can say many more words now; ball, balloon, bubbles, bye-bye, da-da, papa, OOOH, coke, cake, and many more. He tries to say every word that we say. He has made great progress. He has more signs than we can count.
On May 14th, he had his 2nd laser treatment. His airway is getting bigger, but we will still need one, possibly two more laser treatments before it will be all done. Only 2 weeks after surgery and he was already using the
Passy-Muir a lot better. He even asks for it at times. He can tolerate it up to 2 hrs at a time. Then he starts to pull on it. His next surgery is scheduled for July 2nd. We are keeping our fingers crossed and trying to be positive.
