Caleb Matthew Williamson
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On March 3, 2003, Caleb Matthew Williamson was born weighing 7 lbs. 12 oz. and 20 inches long. I wish that were the end of my story, however, it gets much more complicated.
I had had a uneventful pregnancy and was overdue by one week when I lost my mucous plug (about 4 a.m. on March 3) and started having contractions. They weren't very regular, so we didn't go to the hospital right away. I called my doctor and she said to go to the hospital. They decided to admit me and sent me down for the bio-physical profile (an ultrasound). Then, they discovered the baby had an irregular heartbeat and also that I was low on fluid and the baby wasn't moving, so they delivered Caleb immediately by C-section.
The doctors suctioned his mouth immediately, but he inhaled meconium before they could get all of it out and went into respiratory distress. I saw him for a few brief seconds before he was taken upstairs to the NICU. Thankfully, Broward General Medical Center has a Level III NICU and is the best in the county. He was fine under the oxygen hood the first few days, but on the third day, his oxygenation went way down, and he had to be intubated. He was put on a ventilator, and the doctors told us it would probably be just a few days until his lungs cleared up, and then we could take him home. However, those few days turned into 3 1/2 months.
His lungs didn't clear up as fast as they thought they would. It turned out he had inhaled a huge dose of meconium, and it coated his lungs very badly. During the next several weeks, the doctors tried different ventilators (oscillator, jet and regular) to try to clear up his lungs. Then, he developed PPHN (Persistent Pulmonary Hypertension) and was put on 11 different continuous IV's, plus 100% oxygen and Nitric Oxide. We could hardly find a place we could touch him because of all the tubes and wires. Because any stimulation would cause him to get excited, we weren't allowed to touch him except at "touch times" every 6 hours when they would change his diaper and re-position him a little. It was extremely difficult for me--my first baby and I couldn't even touch him! After a few days of the nurses pulling their hair out trying to keep Caleb from pulling out his tubes and wires, they decided to put him on Norcuron to paralyze him until his lungs cleared up.
Towards the end of March, because of the high pressures of the ventilators, he started developing pneumothoraces (air bubbles caught between the chest wall and the lungs), and this caused pressure to be put on his heart. He had numerous chest tubes put in and out to try to relieve the air (a total of 13 in and out), but the holes in his lungs just wouldn't heal up on their own. One morning, the doctor called the house and said they could not put off surgery any longer. When we saw the x-ray, you could see his heart had actually been pushed to the right side because of all the air trapped there. The surgeon went in expecting to have to cut out part of his lung, however he was able to sew up the big holes and put something called fibrin on the rest of the holes to patch them up. (Its similar to fixing a flat tire). Anyway, that worked wonderfully and the next week, he went in and did the same thing on the other lung. He has not had a pneumothorax since then.
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After lung surgeries and still intubated
Because of the prolonged intubation and the possibility of damaging his vocal cords, they decided to trach him on May 16th. They also decided to put in a g-tube in at the same time because of the oral aversion he may have when he was extubated. The trach was a hard decision to make, but it was the right one. I cried when I saw his face for the first time. He had to have tape on his face and a tube in his throat for so long that it was hard to imagine what he looked like without all of that.
They finally took him off the Norcuron on April 24th. However, because he had been immobile for so long, his muscles had become atrophied, and he did not have much strength at all. Also, he was heavily sedated on morphine and fentanyl, so they had to start the weaning process very slowly. He didn't respond as fast as they thought he should so when he was able to be moved, they took him down for a CT Scan and an MRI. It was then that they discovered his brain damage. We had a meeting with the doctors, and they told us he probably would not be able to learn to crawl, or walk or talk or do any kind of "normal" functions. We also were told we could take him to a skilled nursing facility and let him live there. My husband and I decided that we wanted to work with him as much as we could and as long as we were able, so we finally were able to bring him home on June 25th, 2003.
Right now Caleb is ventilator dependent because he does not take deep enough breaths yet. He does all the breathing on his own, just needs the pressure support. He is on a low amount of oxygen (3/4 of a liter) and is being weaned off gradually. He is being fed by a g-tube, is getting speech therapy, we will hopefully be able to feed him by mouth eventually. As far as his movement, he is doing wonderfully. He is moving all of his limbs and his head and acting basically like a 1-2 month baby would because he was asleep for 2 months! He tracks with his eyes, although they move back and forth constantly. He smiles and responds to us and looks and acts for all the world like a "normal" baby.
The respiratory therapist comes every day and he said that his lungs are improving and aren't producing as many secretions as they were even a week ago. He is gaining weight and is about 12 lbs. now. So, we are hoping the trach is a temporary thing. We have 24-hour nursing care, and the nurses for the most part have been wonderful. We have a few mishaps with the equipment, but so far everything has gone well. We have been home a month now and just about everything that can go wrong has, and so now we know what to do when equipment malfunctions! Caleb is very stable now, as long as he gets the oxygen that he needs. Hopefully that continues.
We could not have made it through this trial in our lives without our faith in Christ and other Christians praying for us. I sent out weekly emails to friends and family, and they sent it to their friends and family, and soon people all over the world were praying for Caleb. There were many times that we thought we were going to lose him, but no matter what happened, we always knew there were people praying for us, and that God is good. We don't know how far Caleb will progress mentally (although the signs are very good now), and we are rejoicing in even the little improvements that Caleb has made and continues to make, we know that God has a purpose for everything and we trust Him to give us the strength that we need to face each day.
Update, December 2003: Caleb was decannulated on Thursday, December 4th! He is doing very well and is learning to cough and swallow his secretions. He has made so much progress the last few months. It only took about a month and a half to get used to the passy-muir and then the cap. He was capped and taken off the vent altogether on November 19th and had no problems with de-satting at all. Also, he had a head ultrasound last week, and it came back normal. He is sitting up very well, although not crawling yet, he will be soon. We are still working on feeding by mouth. He still takes everything through his g-tube, but we are going to work on that more now that his trach is out. He turned nine months last week and is growing fast. We are praising the Lord for the miracle He has worked in Caleb's life. What a blessing he is to our family and to those around us.
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Update, November 2004: We praise the Lord for Caleb's continual growth physically, mentally and developmentally. His lungs are doing great, and he is no longer on any medicine or treatment for them. He started walking in July when he was 16 months old. He is still 100% g-tube fed, but has been tasting anything we will give him to eat. We are currently involved in a program at Miami Children's Hospital to help him learn to eat by mouth. He is doing everything that the doctors said he would NOT do! He is definitely our miracle baby!
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Sincerely,
Sharon Williamson
