Malcolm Turner
TrachKid Profile
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On March 7, 2005, Malcolm was born at 26 weeks of gestation - 14 weeks early - because I had preeclampsia. I was put under general anesthesia for the delivery because her platelets had dropped below 50,000. Malcolm was born a not-so-healthy 1 lb 9.5 oz and 12 inches. He was immediately intubated and given surfactant. Despite subsequent doses of surfactant, Malcolm failed an initial extubatation on Vapotherm. He lasted about 24 hours off of the ventilator, but tired out and had to be reintubated. This pattern repeated itself for months.
In between, he was treated medicinally to close his PDA (patent ductus arteriosis), diagnosed with a Grade 1 (left) and Grade 2 (right) IVH (intraventricular hemorrage), and a PVL (periventriuclar leukomalacia).
By the time he was two months old, Malcolm's vent settings indicated that he was strong enough to breath on his own. The "rate" settings were at their lowest breathing between 25 - 30% O2. They NICU doctor had given him steroids (dexamethazone) to reduce any inflammation in his lungs and Lasix (a diurectic) to reduce fluid build up. Every time he was put on the Vapothern or CPAP, severe stridor ensued anywhere from 4 - 36 hours later. He could barely draw breath through his trachea. A pediatric ENT was consulted. He suggested a different schedule of dexamethazone to keep tracheal swelling down. He suspected tracheal stenosis probably due to his long-term intubation. One of the NICU doctors suggested he might have tracheal malacia (floppy airway), but the ENT nixed that. He indicated that he was too small for a tracheostomy, but might be a candidate for it in the future. Once he was big enough, though, he caught an infection.
His last attempt at extubating him on Vapotherm ended in disaster. It started out great. He looked so calm and relieved to have that tube out of his throat. He lasted about 18 hours. I called the NICU around 11 PM to check on Malcolm. The nurse who answered said Dr. Sacks was reintubating him. I asked her if the doctor couldn't call me when she was finished. Dr. Sacks called me back and said alcolm's stridor was too severe. He was working too hard to breathe so they had to reintubate him. The respiratory therapist had had trouble because the airway was so narrow. The doctor barely was able to reintubate him with his standard 3.0 mm ET (endotracheal tube). She had had to push through some resistant, edemic tissue. Then she said to me, "I have to go," and hung up. I sat by the phone a nervous wreck. When she called back, she said Malcolm had promptly extubated himself. She had tried to visualize the vocal cord and barely could. She attempted to intubated with a 2.5 ET tube, but came up against too much resistance. The staff was manually oxygenating him via his nose and mouth with an ambubag. The doctor told me she had paged and then talked to Dr. Poole. He was coming
to do a trach and could she have verbal permission. Of course, I agreed.I actually fell asleep waiting for ENT to call back. He said the surgery went very well. He hadn't lost more than a couple drops of blood. He had kept in oxygen sats up during the surgery and was now resting comfortably (well, on morphine) and well ventilated.
Unfortunately, three days later, the opthalmologist diagnosed him with ROP+ (retinopathy of prematurity with plus disease). He was grade 3 with plus disease - a candidate for immediate laser surgery. He performed the surgery and Malcolm was back on Fentnyl, his favorite morphine derivitive. His vision and retinas were saved but would probably be near sighted and have some loss of peripheral vision. Today his vision is corrected for an astigmatism, but Malcolm doesn't care for wearing his glasses much.
Malcolm soon was off the ventilator, and onto CPAP, and then humidified oxygen. Unfortunately he caught triple pneumonia - pseudomonas, seracia, and staph - and was back on the ventilator. With treatments of three different antibiotics - gentamicin, vancomycin, and one I can't remember - (the big guns, as the nurses called them), he eventually got off the ventilator and back on humidified oxygen. Then we were just waiting for the state's approval to go home with sponsored nursing care. In those three weeks (yes, that long), Malcolm became deathly ill, again with pneumonia with the same organisms, but this time the staph was MRSA (methycillin-resistant staph aureus), a particularly hardy sucker.
Malcolm got sicker and sicker in twenty-four hours, and a blood test was done. Doctors didn't give him much chance. One even said he might be "growing out of his lungs." In other words, his lungs could process enough oxygen to sustain life, even with the help of oxygen and a ventilator. Luckily this was notthe case. He had strep-B sepsis - a blood infection that usually only occurs right after birth when the baby catches strep from the mother in the birth canal. Also luckily, while deadly without treatment, the drugs to treat strep-B sepsis were very effective. After 5 very scary days in isolation, we were out of the danger zone, but Malcolm was not improving enough to get off the vent. A pediatric pulmonologist, Dr. Lovrekovic, was called to consult from Augusta. She thought he was having "microaspirations." Even though he was not being fed PO (through the mouth), any bit of aspiration of saliva, formula or acidic stomach fluids were deadly to his delicate lungs. She put him on Prevacid immediately to help with reflux. As soon as possible, she ordered that he have a Nissen fundoplication.
About a week later, 7/13/05, Malcolm was moved to the PICU - he was the old man of the NICU, at least 28 days past his due date and ready to graduate to the PICU. The advantage there was we had a private room so I could sleep there if I wanted to. Two days later, Dr. Fowler did his Nissen. She also
inserted a G-tube, and fixed his double inguinal hernia. The Nissen was a miracle. He was off the vent within a week or so. Malcolm went home on August 3rd - almost five months after he was born.Malcolm went home on oxygen and a host of equipment - pulse oximeter, oxygen, suction machine, nebulizer, humidifier, etc. It was very frustrating trying to simulate the hospital's oxygen humidification set up which is far more effective. We even had to go back to the hospital once because the air was too dry and he developed mucus plugs. Eventually, we got a system going. We had nursing for 12 hours a day, which was incredibly helpful. We had some good nurses and some doozies.
From the trachestomy.com boards I found out about Dr. Cotton and Cincinnati Children's. I wasn't very satisfied with the ENT we had in Savannah so we moved on to Nemours Clinic in Jacksonville, FL. Ultimately, we decided that this was going to be no simple trip and we wanted the pediatric ENT with the most experience and the best reputation. Malcolm had Grade 3 tracheal stenosis - almost Grade 4. There was no functional airway. I emailed Dr. Cotton late one night and I found an email on my computer in the morning from Dr. Cotton. Amazing! A nurse practioner called me within the week to do an intake interview. She confirmed by suspicions that the course that had been suggested to us in Savannah was probably not appropriate. What I really liked about Dr. Cotton's program was that the GI, pulmonologist, the ENTs, the feeding team, the speech team, the social worker all worked together to make the best decisions for their patients. They meet in the same room and "clinic" the child, rather than independent doctors making their recommendations without the consultation of the other doctors. The upper digestive track, the upper airway and the lungs are in such close proximity and have such effects on each other, it just didn't make sense decisions unilaterally. Everyone in Dr. Cotton's airway clinic is so helpful - the scheduler, the social worker (thank you, Lisa!).
It took about three months to get our initial appointments. Malcolm got sick the week before so then we had to reschedule for about a month later. We ended up going in November of 2006. The GI, pulmonologist, and ENTs did evaluations and tests on Malcolm. We had chest xrays, an MRI, test that measures if he is aspirating, and a scope. After going home, we got the results about a week later. Rather, we knew the results of the individual tests, but we had wait for the team to clinic and make a group decision. Dr. Cotton believed that Malcolm would be a candidate for a single-stage laryngotracheal reconstruction, but that he needed to grow stronger in his lungs because the surgery was very hard on the little lungs as they have to stay sedated and ventilated for a week post-op. We were to return in six months for re-evaluation.
In June, we returned to Cincinnati. Malcolm was not progressing with his eating or drinking. We were still tube feeding him. However, Dr. Cotton was happy with his scopes and, more importantly, our pulmonologist, Dr. Wood, was happy with the growth in his lungs. We scheduled surgery for August.
At the beginning of August we returned to Cincinnati for Malcolm's big LTP surgery. I was excited. My husband was nervous, chafing. The surgery took awhile and we met Malcolm in the PICU where the staff is used to coping with these recoveries and understand all the details and protocols. Malcolm wasn't allowed to wake up for 7 days. He was intubated through his nose and ventilated. The tube also served as a stent for the surgical site. Dr. Cotton inserted two pieces of Malcolm's rib cartilege into his trachea to increase the circumference of the airway. Technically, Dr. Cotton inserted an anterior (front) and posterior (back) rib graft. He also inserted a small piece of cartilege on the side of his trachea to help keep it sturdy.
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