Ethan Jarred Smith
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Ethan minutes after birth
ASD/PDA/Talipes equinovarus, bilateral (club feet)/Hypotonia/Facial dysmorphia/cryptorchidism,left/undiagnosed low muscle tone/moderate to severe hearing loss/weak optical nerve (severe farsightedness)/undiagnosed syndrome/mic-key button/Wolff-Parkinson White Syndrome/fundoplication/low birth weight/scoliosis/kyphosis
It all started when I was 16 weeks pregnant. I was in full blown active labor. They eventually stopped my labor with breathine shots every four hours, but there was still a very serious problem. They could not find a fetal heartbeat. They sent me to ultrasound. There on the screen was a little baby bouncing around, waving and scratching it's head. It had a strong heartbeat. She told us it was a boy. The only problem was that he was frank breech. Over the next five months it became a routine. In and out of the hospital and on and off of bed rest. I kept telling everyone that something was wrong with the baby. I never felt him kick and I rarely ever felt him move. My doctor ordered bi-weekly stress tests and weekly ultrasounds. She also did extensive blood work just to ease my mind. Everything always came back normal, except that he was still frank breech. We started discussing a planned c-section in case he didn't turn before my due date which was September 6th. August 18th, 2004 was a very normal day. I went to work, did a stress test, an ultrasound and was waiting at the doctors office for my weekly checkup. At about 5pm Dr. Evans came in the room. She told us that it was time to have the baby, right now. She assured us that the baby was fine, it was just that the ultrasound was showing limited fetal growth, low amniotic fluid, poor cord circulation and still frank breech presentation. The ultrasound tech had told her that the baby looked fine and was 6 lbs. 9 oz. So at 8pm I was prepped and in emergency surgery and at 8:21pm Ethan Jarred Smith was born. But something was very wrong. Ethan was blue and floppy and wasn't breathing. They gave him oxygen which did nothing. Next they intubated him and with maximum ventilation and oxygen they were barely able to maintain his sats. After they somewhat stabilized him they weighed him. We couldn't believe it when they told us he weighed 3 lbs. 12.4 oz. He was 17.25 inches long. We still didn't really know what was wrong with him. The attending pediatrician was concerned that he may have an enlarged heart, and he wasn't hearing good air flow as Ethan was taking breaths, so he decided to send him to the Jackson Madison County General Hospital NICU where we eventually spent 3 months. The next several weeks were a minute by minute situation. The neonatologist Dr. Donna-Jean Walker was very uncertain of what would happen. She was very honest with us. They had a hard time getting a feeding tube down his nose, so they put one down his mouth. A few weeks later Ethan went to bi-pap, and then to a bi-nasal cannula. He was doing so well we really thought we were on the homeward stretch. They started doing well baby exams and he failed his vision and hearing. They called Dr. Raymond Stefko , an orthopaedic specialist to cast his little feet, they were severely clubbed. Dr. Stefko also diagnosed diagnosed him with scoliosis and kyphosis which he will surgically correct when he is about a year old. Then one night we got a phone call and they told us that they had to intubate him again and were doing everything ot save his little life. We were devastated. Losing him never crossed our minds. Dr. Walker suggested that we go to lebonheur Children=s Hospital in Memphis for a tracheostomy, a g-tube and a fundoplication. She told us that may be the only way we would ever be able to take him home. September 9, 2004, Ethan received his surgeries. It took about 8 hours, the longest 8 hours of my life. Ethan came out of surgery doing so well. His sats were 99-100, he was fairly pink, and for once we could see all of his beautiful face. He received a 3.5 Bivona trach and a 18 french foley catheter as his g-tube. We spent 4 more days at lebonheur and then went back to the JMCGH NICU. They were able to take Ethan off the ventilator, down to c-pap and then eventually to a trach mask with half a liter of oxygen. We were a week away of finally going home. We did our 48 hour stay, everything was ready. We had our 24/7 nursing set up, all the equipment in our house, all we needed was Ethan. My mom, who is a nurse, agreed to ride home with us just in case. We said good bye to all of our doctors and nurses that had been such a big part of our family for the past 31/2 months. We will always remember and want to say a special thank you to: Dr. Walker, Dr. Go, Dawn RN, Melissa RN, Keita RN, Wendy RN, Ginger RN, Helen RN, Amy PT, Kenny RT, Dorinda RT, Debbie S. NP, and Mary Lou, PT. And also thank you to Debbie B. For helping to become a successful breastfeeding mother! But unfortunately........less than five miles from our house, Ethan plugged and stopped breathing. He was completely blue, and within a few seconds had no heartbeat either. I was too upset, and completely out of it to even help him. So my mom did CPR and I called 911. After a few minutes of CPR, Ethan pinked right up but was still in respiratory distress. The ambulance took him to the Henry County Medical Center, and within an hour or so, the JMCGH mobile unit was there to take him back to the NICU. They decided sitting up in the car seat was too much, and ordered him a car bed. We stayed about a week and we were back home. Things went well for a couple weeks. We were all just trying to get into a routine, and to really figure Ethan out. Then morning a nurse overfed Ethan by double of what he was supposed to get. Later that night Ethan spiked a temp and we were unable to maintain his sats. We took him into the ER, and we were transported to the JMCGH PICU. This is where we stayed until Ethan turned 5 months old. They made the decision keep him on a home vent because the overfeeding led to aspiration pneumonia. His lungs were nowhere near as strong as they used to be. Since then we have been back and forth, from JMCGH PICU to home. The longest we have been home has been 29 days. He has had 6 cases of pneumonia since then. A special thank you to Ethan=' PICU nurses: Mary RN, Alicia RN, Rhonda RN, Robbin RN, Robin RN, Tara RT, Trina RT, Laura RT, and Pam RN. Although it is a day to day struggle, and in and out of the hospital adds to it, we see through it all, and see what a beautiful blessing Ethan is. We couldn't ask for a son who is more perfect than he is! Ethan is no longer casted, his feet have corrected. He now wears leg braces 23 hours a day. We are planning to have a tendon release surgery on both feet in the next few months. So far we have tested Ethan for: Prader-Willie, Smith-Lemli-Opitz, fatty acid chains, homosystanuria, Marfan's Syndrome, and Cystic Fibrosis. We hope to test him next for X-linked myotubular myopathy in the near future.
Ethan's Doctors and Resources:
Vanderbilt Children's Medical Center-Nashville, TN-
Genetics-Dr. John Phillips
Pulmonary-Dr. Christopher Harris
ENT-Dr. Shelagh Cofer
Vision-Dr. J. Lekse & Dr. Donahue
Audiology-Dr. Lauren Cordle
GI-Dr. Arthur
Neurology-Dr. Sharp
Urology-Dr. Adams
Orthopaedics-Dr. Green
Cardiology- Dr. J. Johns
Dermatology-Dr. Michael Smith
Dr. T. Paul Evans is Ethan's PCP in Huntingdon, TN
Dr. Raymond Stefko-Sports Orthopaedics & Spine-Jackson, TN-Pediatric Orthpaedics
Chris Plunk-Snell's of Jackson-Orthodics
Jan Hosford-ST-Henry County Medical Center Center for Wellness and Rehabilitation-Paris, TN
Debbie Jelks-PT-Henry County Medical Center Center for Wellness and Rehabilitation-Paris, TN
Jennifer Davis-OT-Careall Home Health Services
Equipment we use at home:
-LTV 950 ventilator
settings:
mode-simv
rate-10
total minute ventilation-2.0
Fio2-21
pressure support-10
peep-5
set inspiratory pressure-18
i:e ratio-.5
Peak airway pressure-22
mean airway pressure-7
average respiratory rate-31
average spontaneous tidal volume-68
-Pulse oximeter
-Nebulizer
-Suction Machine
-O2 rescue tank (PRN w/ ambu bag)
-concentrator
-Bivona trach
-Dale trach collar
-Littman Lightweight II S.E. stethoscope
-Kangaroo feeding pump
-fisher paykel humidifier
-8 fr. Suction caths.
Resources
Tennessee Early Intervention System (TEIS)
Careall Private Duty Nursing (24/7)
Children's Special Services Medical (CSS)
Tennessee Infant Parent Stimulation (TIPS)
Methodist Alliance-respiratory DME company
Medical Center Medical Products-Infusion DME company
Kiwanis Center
Ethan's Meds
Robinol 1ml q d
Lasix 1.5ml q d
Albuterol 2.5mg q 8
Pulmicort 2.5 mg q 12
Enulose 1/4 tsp. PRN
Tylenol .9ml PRN
Motrin 2.5ml PRN
Simethicone .3ml PRN
Poly-vi-sol c fe .5ml q 12
Bactroban to GT stoma PRN
Saline 3 drops per trach PRN c deep sxn
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Update March 2005: Our attending physician at JMCGH made the decision to send us to Vanderbilt Children=s Hospital for higher specialized pediatric care. The main reason for admission was Ethan=s heart episodes, such as V-tach, bigeminy, and tachycardia. He started out with just PVC runs and pairs, increased heart rate and missed beats and then progressed for the worst. His cardiologist diagnosed him with Wolff-Parkinson-White Syndrome which just means that his heart has an extra circuit. So far he is asymptomatic, so they have decided not to treat it at this time. He was diagnosed using an echo, EKG, and a heart ultrasound. He also saw neurology, which sent him to MRI. The MRI showed big portions of Ethan's brain is missing and what is developed isn't developed properly. He was also diagnosed with hydrocephalus. Opthalmology saw him and found he had a weak optical nerve, which ultimately will cause a vision weakness. He will receive glasses in the future. Audiology saw him and found he has moderate to severe hearing loss, and he will also be fitted for hearing aids in a few months. Orthopaedics ordered a hip ultrasound, scoliosis survey, and knee, feet, and AP & lateral x-rays. They will follow up with surgeries and more appointments. Genetics also saw him, but they couldn't come up with a diagnosis after only the first consult. They did mention Zellweger syndrome as a possibility though. Most excitingly though, on 3-10-05, Ethan received his Mic-Key button. It is an 18 fr. 1.0 cm. Vanderbilt was a wonderful hospital, but of course we were very happy to come home!
Update May 2005: Ethan underwent surgery to place a VP shunt on May 17, 2005 under the care of Dr. Tulipan and Dr. Yao. The surgery went well with no complications although he did get a post-op infection. We expect a great recovery, and for things to go back to normal soon. We can already see a difference in his head circumference, and his overall health has improved since the pressure is off his brain.
