Matthew & Thomas Burkholder
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Matthew (left) Thomas (right)
March 2002
August 16, 2003
I was excited but totally overwhelmed to find out I was pregnant with twin boys. My daughter, Hannah, was only 9 months old and the thought of 3 in diapers was more than I could imagine. When the boys, Matthew and Thomas, were born 3 months early on July 3, 2001, totally unexpected, we were shocked but tried to stay optimistic. So many friends and family shared success stories of preemies they had heard of who were home by their due date, had no health problems, and were now full-size kids! I felt certain that my boys would be home by their due date, healthy, and we would go on with our lives the way I had envisioned. About 2 weeks into their NICU stay, I heard the doctors begin to describe the boys as having chronic lung disease…then they began to call it BPD. The doctor told me they would not be home by their due date, but that they would be in the NICU many months and probably on oxygen when they went home. I was devastated, but began to accept the facts and continued to pray for God to do a miracle.
One Sunday morning on my way to church, I called to check on the boys. Matthew had
extubated, and the team of doctors and nurses had a very difficult time re-intubating him. They broke the news to me that we needed to start considering a tracheostomy for Matthew. His lung disease was severe, and
re-intubating him was becoming more and more treacherous each time. He needed a more stable airway. The idea of a trach took a couple of weeks to come to grips with. I didn't want that for Matthew. I deferred the decision to my husband, since he seemed to be thinking more rationally than me. Hindsight is always 20/20, and I'm thankful that my husband decided to go forward with the tracheostomy, otherwise I may not have my Matthew today. Once he recovered from the trach surgery I was so glad to see his face and get to interact with him without the ET tube! I'll never forget feeling overwhelmed to the point of tears as I learned all there was to learn about taking care of a trached child. I wondered how I would be able to do it all - and with a toddler and another infant on top of that!
As the medical team continued to slowly wean the boys from the ventilators, we were still hopeful that we would be able to get Thomas off the ventilator without problems. The day they took the ET tube out we could hear bad stridor and we could see him struggling with each breath. The medical team was willing to give him some time to see if the stridor would get better. But it didn't… instead it got worse. When our ENT doctor, Dr. Edmonds, scoped him, he found subglottic stenosis and
re-intubated him immediately. I couldn't stand to see him intubated any longer, so we agreed to tracheostomy surgery for Thomas ASAP. Two baby boys with trachs (and G-buttons)! It was so much to accept, and yet all I wanted was for them to come home, no matter what it took.
Once home, we were thankful for private duty nurses who helped carry the load and provide relief so we could rest. Those first few months were long and hard. It was of more benefit to us to schedule our nursing care during the daytime hours since I had a toddler to take care of as well. So our nights were always interrupted several times by the beeping pulse ox monitors. It was only by the grace of God that we survived those first 5 months.
In May, we took both boys for laryngoscopy procedures. Thomas had already been diagnosed with subglottic stenosis and we had been told months before that he would probably need surgery. Dr. Edmonds said that if everything looked good with Matthew's trachea, that he might be able to be
decannulated. So were expecting good news on Matthew and bad news on Thomas. We got the opposite. Thomas' trachea, although narrowed, looked much better than it had 6 months prior and Dr. Edmonds wanted to try to decannulate him that day! What awesome news! Matthew, on the other hand, was diagnosed with Grade IV subglottic stenosis, meaning a complete closure of the trachea. Dr. Edmonds asked us if Matthew had ever had signs of reflux. I was shocked! We had noticed reflux since coming home from the NICU, but none of Matthew's doctors thought it was anything to worry too much about. Matthew's trachea looked red and swollen, as if stomach acid had aggravated the already tender tissue in the trachea, contributing to the complete stenosis. Both boys were admitted to the hospital that day, May 10, 2002 -- Thomas for decannulation, and Matthew for a reflux work up.
Once Thomas' trach was removed, he never looked back. He immediately became a "normal" 10-month old. I wasn't used to all that loud crying!! He began to eat all kinds of foods and by October, 2002, we were no longer using his G-button at all. He pulled it out Christmas Day, 2002 and we decided not to replace it. He is 100% boy, a big eater like his daddy, talks up a storm, is into everything, and is a bit temperamental! Sometimes I can't even remember what it was like when he had his trach. He's come so far since then, and we're very proud of his remarkable progress!
The next year with Matthew was challenging -- going through the winter months trying as best we could to stay healthy so as to keep Matthew out of the hospital, dealing with his reflux and subsequent eating issues, and waiting (impatiently at times) for Spring to come when Dr. Edmonds would perform trachea resection surgery.
After months and months of trying to manage Matthew's reflux with medicines, we finally agreed to fundoplication surgery, which was performed in March of 2003. The reflux had to be under control in order for Dr. Edmonds to perform the trachea resection. Otherwise, stomach acid would once again irritate the trachea tissue and cause the same problem Matthew had before. In May of 2003, Matthew had trachea resection surgery. Yea! Since then we have been back for 4 laryngoscopy procedures for Dr. Edmonds to observe his trachea. Matthew's body still wants to grow scar tissue in the trachea, so Dr. Edmonds is trying to identify that tissue growth early and reduce it with laser treatment. Once the trachea looks as though it is no longer scarring, he will attempt decannulation. Hopefully, this will be very soon!
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Matthew (left) Thomas (right)
July 2003, Twins 2nd Birthday
January 12, 2005 Update: Well, Matthew has had several failed attempts at decannulation since my last entry. Apparently the trachea is just a tiny bit too narrow for him to breathe comfortably on his own. Our hope and prayer is that the trachea will grow as he grows so that next spring he can be successfully decannulated.
Since August of 2003, Matthew has become a different child. After fully recovering from the CTR surgery, and no longer having problems with reflux and a distended belly, he began to eat like a normal kid! That's enough to make any Mom very happy! He was taken off oxygen, and successfully wears the Passy-Muir 24/7. His secretions are significantly decreased and he has learned to cough up the secretions around the trach instead of being suctioned. His verbal skills have improved so well wearing the Passy-Muir valve. He is talking at the level of a normal 3-year-old and is now attending preschool with Thomas and loving it! Thomas is still bigger than him, but Matthew is growing, thriving, and not allowing the trach to slow him down at all.
We are so proud of both our miracle boys!!
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Update, August 17, 2005: We had begun our plans to move to Corpus Christi, but thought it best to give Matthew one more attempt at decannulation before moving 4 hours away from all of our doctors at Texas Children's. In God's perfect timing, Matthew was successfully decannulated on June 16, 2005, just 2 weeks before his 4th birthday and 1 month before our move to Corpus! It all happened so fast and with so much other stuff going on...we didn't get a chance to really celebrate the way we had imagined we would. In fact, it's amazing to me how quickly the trach becomes a faint memory once it's gone! I am forever grateful to Dr. Edmonds for being gutsy enough to operate on a "hopeless" airway! I am also grateful for Aaron's Page. I have received so much emotional support through this website -- THANK YOU to this community of champions! May God Bless, Kristen Burkholder (Pictures are from Matthew and Thomas' 4th birthday party)
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Matthew Decannulated!
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Twins 4th Birthday
