Matthew Alan Smith
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Diagnosis: Persistent Buccopharyngeal Membrane, high palate, tethered spinal cord, g-tube, and nissen.
Matthew was born a month early on November 10, 2001, after a very complicated pregnancy. I had a large amount of amniotic fluid and the doctors had no idea why. I went into early labor and had to be on bedrest and take pills. That worked for about a week and a half, then Matthew decided it was time to see the world.
As soon as he was born, I knew something was wrong. He was blue and was not crying. We found out later he was in severe respiratory distress. I asked the doctor and he said it was probably just stress from birth. He handed Matthew to the nurses and they worked on him in the room for a while and finally took him to the nursery. After a while the pediatrician came in and told us we had a very sick little boy and they were not sure at this point whether he would live. And they didn't know exactly what was wrong with him. That was quite a shock to us. How do you go from it being one of the happiest days of your life to one of the worst? We knew it must be serious, but we had no idea it was this bad. They told us Matthew would be transported to the University of Virginia as soon as he was stable enough to go.
When the NETS team got there they took him right away to UVA . The nurses said usually they bring the baby into the room and let the parents see him but he was too critical to be brought in to us. Jeff and I did not get to see him before he left, all we could do was pray. The ENT surgeon called and said he felt sure he would have to do a tracheostomy upon arrival - would I give permission. I said just save my baby. A tracheostomy was done upon arrival and Matthew was in the NICU for one month. It was a very, very rough month. The diagnosis was Persistent Buccopharyngeal Membrane, a membrane that completely covered the back of his throat, no oral airway at all. He had surgery at 2 1/2 weeks to remove the membrane. At one month old, he was transferred to Kluge Children's Rehabilitation Center for us to learn to care for him at home with a trach. In December, they re-checked his throat and found that scar tissue had grown back and almost completely covered the hole they had made. Then the decision was made to do a feeding tube in his stomach because it would be a long time, if ever, before he could eat by mouth. So on 12/26, he had a feeding tube placed and the nissen performed.
Matthew came home when he was three months old. He was home 2 weeks, got a bad cold, and ended up in the hospital for a week. He got home and about 2 weeks later got RSV and ended up back in the hospital for almost a full month. Finally, we got over that and came back home to try it again. We have a wonderful nurse who comes in M-F, 7-3, to take care of Matthew. We are so glad to have nursing care because we also have a VERY active nearly 4 year old son, Daniel, who is the other joy of our lives. Daniel loves his little brother and is very protective of him and Matthew simply adores Daniel. For all Matthew has been through, he is the happiest baby, he is always laughing and smiling and flirting with all his nurses every time he is in the hospital. We jokingly say that is why he wants to go to the hospital all the time, to see the nurses. I thank God every day for my two beautiful boys. We have been truly blessed.
Once we got Matthew home again, we started to look for other ENT doctors. We found Dr. Cotton in Ohio and have been twice to see him. We are so happy to have found him, he has given us hope that one day Matthew will be able to eat and drink by mouth and have the trach out. On August 8, 2002, we had a second surgery performed by Dr. Cotton and his team and are currently waiting on a post-op check up with them. I will do an update whenever we get more news. Thanks for reading about our miracle baby, Matthew.
I am so glad to have found this tracheostomy site. It is nice to know that we are not alone in our struggles. If anyone wants to email me, please feel free.
February 17, 2003: Hello again, it has been a long time since I updated Matthew's page and a lot has happened since. We got a good report from Dr. Cotton on his throat surgery. The scar tissue has not come back and he now has a small airway!!! Thank the Good Lord for that!!!! But we also got very unexpected news in October at our checkup. Dr. Cotton said that since Matthew's mouth and throat was so small there was not enough room to take out his tonsils and adenoids. They told us he would have to have mandibular distraction surgery. That surgery would be breaking his jawbones and putting a pin in the top jawbone and a pin in the bottom jawbone to bring out his jaw and make his mouth and airway bigger. Of course, that announcement was very unexpected and nearly floored both my husband and I. At first, I said there is no way, but my husband reminded me that we have come so far, we can't quit now. So we agreed to the surgery (unhappily).
Matthew had the mandibular distraction surgery on October 25th, 2002. The pins were supposed to be in for 4-6 weeks. But once again, with Matthew, there is always a surprise. We went back to Ohio for a checkup in November and the plastic surgeon told us that the top pin had slipped out of the bone and would have to be replaced and pins left in for several more weeks. (We turned the pins 3 times a day, 2 fulls turns each time, to bring his jawbone out) So we had the top pin surgically corrected in December. Spent two weeks in the hospital and got home about 5 days before Christmas! So Christmas was not really what we were expecting but at least we were all together!!! FINALLY, on January 10th, 2003, we got the pins out. After 2 1/2 months of misery!!!! Poor Matthew slept better the first night back at the Ronald McDonald house after surgery than he had for the past 2 months. He is such a trooper. He is still the happiest little fellow we have seen. And STILL flirting with his nurses and his pediatrician!!
But the mandibular distraction did a good job. His jaw is definitely longer and he makes more noise now. We are currently scheduled for a checkup February 25th with the plastic surgeon and another x-ray on his jaw. Then we are taking a break until April. In April, we will go back to Ohio to have his tonsils and adenoids removed and see what Dr. Cotton says and where we go from there. I'll do an update whenever I get results from our April visit!!! God Bless and thanks for reading Matthew's story!!!
