Katelyn Benjamin
TrachKid Profile
-
My wife Vickey has been an Insulin dependent Diabetic for the past nineteen years. She is dependent on daily injections to keep her sugar levels stable. She had always been concerned about becoming pregnant, thus she consulted her physician. She was told many diabetics have healthy, safe pregnancies and that we should begin trying for a baby. In the fall of 2000 our prayers were finally answered. We found out we were expecting. With all the excitement and joy we felt, we never expected to encounter so many obstacles. Being diabetic and pregnant, Vickey was considered high-risk and she was closely monitored. After many routine ultrasounds, to everyone's surprise, another heartbeat was found and we were informed that Vickey was carrying twin girls. Some concerns did arise with this discovery. The second baby was smaller and seemed to be behind in development. At one point we were informed that the second baby would not survive and we should discuss aborting the smaller baby. We were absolutely against aborting the baby and even refused any kind of chromosomal testing. Days and weeks passed and the baby would continue to grow and she would later be born, Katelyn Elizabeth Benjamin.
Vickey was sick every morning. The vomiting affected her ability to eat which affected her blood sugar levels, which affected Vickey. She was seeing her obstetrician, a diabetic specialist, and after blurred vision occurred and would not go away, she began seeing a retina specialist (to try to stop the damage that was occurring with her eyes). She was forced to stop working when she was unable to drive or read. Because of her disability she was removed from her companies "regular" insurance plan. Without the "regular" insurance plan, we were forced to pay $800 a month (out of our own pocket) for COBRA insurance. Vickey was now a prisoner of her home because of her inability to drive. Not only were we stressed by the loss of Vickey's vision, the stress of the loss of income and the high cost of her health insurance, but major health issues were developing for Vickey. She began to experience major drops in her blood sugar levels throughout the pregnancy. Myself and the entire family were in constant contact with her on an hourly basis to make sure she was not in need of help. At one point we thought we had lost Vickey when we were unable to contact her by phone. Even throughout the night I would wake Vickey to make sure she was still conscious (there was always the fear that she could slip into a coma). One afternoon I remember calling every member in our families to see if they had spoken to Vickey. No one had. Both I and Vickey's sisters raced to her house after I had tried to converse with Vickey on the phone. Her speech was slurred and she couldn't communicate and she was crying. I called 911 and told them they may need to break down the door. Fortunately, Vickey was able to crawl to the garage door and press the garage door opener and then laid on the garage floor waiting for help. After that we never left her alone. She stayed with her sisters or mother while I was away. Shortly after, we called her obstetrician to report that her body was swelling up to her chest and that she had shortness of breath. I brought her to the emergency room where she spent the next five weeks in the hospital until the emergency delivery of her twin daughters. While in the hospital Vickey suffered from Pulmonary Edema (lungs filling with water), Diabetic Retinopathy, Congestive Heart Failure, Anemia, Toxemia/Preeclampsia, High Blood Pressure, High and Low Blood Sugar Levels, and she had four Blood Transfusions. They found protein in her urine and were also concerned her kidneys were shutting down. No one was sure Vickey or the girls would make it. On Saturday, April 28th, 2001, Brianna Victoria and Katelyn Elizabeth were born. Vickey remained in the hospital for an additional two weeks, losing over 50 pounds within the first week after giving birth, due to all the water weight. She left the hospital empty-handed and in need of rides to and from the hospital because of her poor eyesight.
After the difficult pregnancy, the struggles continued. Brianna Victoria Benjamin was born first weighing 2 pounds 13 ½ ounces, and she was only 15 inches long. She was immediately placed on a ventilator, she was fed fluids intravenously, she was Jaundice and she was placed in the Neonatal Intensive Care Unit (NICU) at the hospital. On day three, she was given her first Blood Transfusion. Because of her low birth weight and the hundreds of blood-gas tests, her body wasn't producing the needed amounts of blood. She was fed breast milk through a tube in her nose/mouth (NG tube) a week later. Despite the side affect Vickey was experiencing from pumping her breast milk, she continued for her daughters. Brianna was given many medications to force a valve in her heart to close (PDA). It usually takes one dose; it took three tries to close her valve. Brianna extubated herself from the ventilator on several occasions in the first month. This later caused vocal cord and airway problems because they had to re-intubate her every time she extubated herself. Even as a baby this intrusive tube bothered her. Vickey spent her first Mother's Day at the hospital with the girls. By the end of May Vickey was physically, mentally, and emotionally drained by her DAILY visits. She would be at the hospital for eight plus hours every day. Her pumping had taken its toll (fighting with a severe Mastitis infection) and she stopped pumping soon after. Shortly after that, Brianna developed Pneumonia and a Staff Infection. During this time she extubated herself again and had to be re-intubated. The NICU tried a CPAP on Brianna, but it didn't work. Infectious Disease got involved with Brianna's case because the hospital couldn't get rid of the Staff and yeast infections. After finding the correct antibiotic Brianna's breathing was labored and noisy (Striderous). Breathing treatments began soon after, but they didn't work. On June 1, 2000, the hospital performed exploratory surgery on her lower airway (Bronchoscopy). Days later a second Bronchoscopy (on the upper airway) was performed. The results showed there was damage to her vocal cords and that they might be paralyzed due to the ventilator and her lengthy intubations. By mid June there were vision checks and concerns that would be monitored from now on, another Blood Transfusion and another attempt off the ventilator, but no success. Still striderous, Brianna had an MRI done to see if her vocal cord paralysis was brain related. The next day Brianna had her third blood transfusion. Thoughts of a Tracheotomy began to be discussed. A Barium Swallow Study did not bring any answers. After a second and third opinion, Brianna had a Tracheotomy on July 12, 2001. Initially Vickey and I were terrified of the whole trach but after talking to a couple families who have been through this we were more prepared. We took CPR classes, practiced changing the tracheotomy, cleaning the trach, and even spent the night (under nurses care) to attempt to see what it would be like to care for Brianna in our home, but more concerns were raised. The hospital, pediatricians, and neonatal physicians insisted we receive in-home, 24-hour care, but our insurance wouldn't cover the cost. It's approximately fifty dollars an hour for a certified nurse to be in the home for one nurse caring for one child. We couldn't bring Brianna home until we had more help! Other family members could help but they have children of their own and Brianna can't be around other children for fear of catching a cold or getting an infection, not to mention that no one is medically trained to care for Brianna. Victoria's vision is still not back to were it needs to be and she is still a Type 1 Diabetic (Victoria has been Diabetic for 19 years!!).
Katelyn was born Saturday, April 28, 2001, weighing 2 pounds and she was only 13 inches long. She was born with a Cleft Lip and a Cleft Palate. At birth they began monitoring all of Katelyn's vital signs through her belly button (a main vein). She had her first Blood Transfusion on May 1. Vickey and I were informed that there was a Hole in her Heart (VSD). They tried to correct her heart problem with medication (PDA), but it did not work. After becoming Jaundice and receiving Platelets a doctor from Loyola was finally called to surgically close the valve (PDA) on Katelyn's heart. She received another Blood Transfusion and after the (PDA) surgery many other complications arose. Even with the use of a chest tube one of Katelyn's lungs collapsed after surgery. A needle was inserted to draw the air out of her chest cavity so her lungs would re-inflate. Soon after her recovery, she too extubated herself many times. It was harder to get her off the ventilator because of her cleft lip. On May 17th she had another Blood Transfusion. Soon after, her throat started bleeding because of the constant intubation and extubation. She was given medications to stop the bleeding. On May 23, Katelyn had her fourth Blood Transfusion and Infectious Diseases was called in to help solve the type of Staff Infection she had caught (which was a different type of Staff than her sister had). Katelyn was now seeing an eye specialist to monitor the development of her eyes. They were not maturing as quickly as they expected and that posed a concern. When I left for my annual Air Force Reserves (which I serve one weekend a month and two full weeks a year) on June 9th, the Staph Infection went to her blood and they had to use the strongest Antibiotic known to try to stop the infection from possibly killing her. Thank God it worked! On June 16 Katelyn tried to drink from her first bottle; the attempt was unsuccessful and she continued on tube feedings (NG). On June 19th Katelyn began having episodes of dropping heart rates (Bradycardia) and dropping respiration (Apnea). Her vitals began dipping for no apparent reason. These bouts of Apnea lead to a twelve-hour sleep study with more machines. With no answers we elected to do Exploratory Surgery on her airway. The Doctors found that her vocal cords weren't moving properly and they would need to do laser surgery. Vickey and I were stressed even more when we were told that there was a chance of a fire in her airway during the laser surgery??? Luckily there wasn't. On Jul 20th Katelyn had a Barium Swallow Study conducted on her (just like her sister). They discovered that her vocal cords were not protecting her airway, as they should. Because of this Katelyn would not be allowed to bottle-feed and would have to be NG fed. After another Sleep Study on July 24th, the results showed that Katelyn showed signs of Severe Reflux, Apnea and bouts of Bradycardia. Katelyn did not pass her hearing test on July 29th and on July 30th the results of her first MRI did not look promising. After a complex MRI on July 31st, they found part of her skull bone was not developed properly. On August 2nd the Neurosurgeon suggested Brain Surgery to remove the portion of her brain that is invading her nasal cavity because of a missing skull bone (no cribiform plate) and in doing so she would lose her sense of smell. After receiving this information, Vickey and I sought a second opinion. The second neurosurgeon felt the MRI results showed some concern, but he suggested that they wait to correct the missing cribiform plate and protruding brain. Having two opposite opinions, they sought a third opinion. The third opinion (from a plastic surgeon/facial cranial surgeon) agreed with the first opinion, suggesting that they correct the concerns immediately. (The plastic surgeon would also correct Katelyn's Hyper Telorism-widening of the eyes.) Thus, they sought a fourth opinion. The fourth neurosurgeon agreed with the second opinion, suggesting they wait until Katelyn is older. Greg and Vickey took the last surgeon aside and explained that they now have two doctors telling them to correct the problem immediately and two doctors telling them to wait. Everyone agreed that something must be done, but when was the question. They needed some direction. The director of the department stepped in and told Greg and Vickey that he would take the MRI films to a Neurosurgeon Conference (that is being held at the end of the month). His plan was to have all the neurosurgeons (in the Northern Illinois area) look over the MRI films and debate over what is best for Katelyn. Greg and Vickey agreed and they are waiting for their suggestions. Of course this great idea never happened because the initial bone-headed Neurosurgeon forgot to bring the films to the conference. In the mean time, still fighting the severe reflux, and no help from the prolonged use of medicines, surgical procedure had been warranted. As they prepared Katelyn for surgery on August 14, she did not respond well to the sedative and her heart rate dipped and she stopped breathing. After stabilizing Katelyn they again encountered trouble. Because of Katelyn's cleft lip and palate, there were problems trying to intubate her and she had to be intubated in the operating room. During surgery (to eliminate the reflux problem) they wrapped Katelyn's stomach around her esophagus (fundoplication) and they also inserted a G-tube to aid in feeding directly into the stomach. After the surgery was completed, Vickey went to the Emergency Room where she was admitted because of a severe infection that originated in her breast. She was kept over night and released the following day. She was not able to see her daughters for an entire week. On the morning of August 15th Katelyn had a seizure. Her arms and legs were shaking for five minutes before they medicated her. The hospital did not know the cause so they stopped all other medications and gave her an anti-seizure medication. An EEG was used to check Katelyn's brain. No unusual results were found, but another EEG was scheduled. On August 24th Blue Cross & Blue Shield denied Hospitalization for Brianna and would no longer pay her Hospital bills. August 28th marked the girls four month birthday at the Hospital. Central DuPage Hospital has never had critical children stay in the Hospital over four months since.
On Tuesday, September 4, 2001 Brianna was sent home with a trach, monitoring machinery and humidifier hose and only Vickey and I to take care of her. On Friday September 7, 2001 Katelyn was discharged with a feeding tube in her stomach, wheezing when she breaths, monitoring machines and humidifier hose. It is frightful to think that in this day and age two very vulnerable little girls are fighting for their lives with no help in sight. We have been doing the best we can to care for our two brittle angels but we have no medical background and don't forget Vickey is diabetic. We are still trying to get some kind of in-home Nursing Care; it is definitely needed, but BLUE CROSS & BLUE SHIELD COBRA insurance STILL REFUSED to pay anything.
Katelyn is being scheduled for a battery of tests including a new MRI, CT for the near future. The surgery to correct her cleft lip will be done when she is more stable.
9/12/01 : As of today, Brianna and Katelyn are home. Brianna came home September 4th and Katelyn came home September 7th. They are NOT receiving nursing care so our families have been taking turns staying with them on weekends and during the day. Vickey is averaging three hours of sleep per day. She sleeps on the floor in the girl's bedroom because she is afraid something will happen or she won't be able to hear the monitors. If you entered the girl's bedroom you would see two APNEA monitors, two Respiratory Humidifier, two Pulse Oximeter Machines, an ambulatory enteral feeding pump, a kangaroo feeding pump, a suction unit (to suction Brianna's trach), two oxygen tanks, two air compressors, a portable oxygen tank, a portable suction unit, IV poles, self inflating ambio bags and hundreds of feet of tubing running through their bedroom. Vickey sleeps near the girls because she is afraid she won't hear Brianna cry (she is unable to make sounds because of her trach. She also worries about Katelyn since she is known to have problems with APNEA.
11/27/02: It has been quite a while since the last update and lots has happened. Things are much better now. We have Nursing help now thanks to DSCC here in Illinois. We are very fortunate to have such a great case worker at DSCC. We are also very lucky to have such great doctors.
The girls are doing much better. Katelyn has had all (three) of the Cleft Lip/Palate repair surgeries and she also has a trach which she has had for over a year now. Katelyn is eating some by mouth now but she is still being fed primarily through her G-tube. We have therapists at the house everyday of the week. My wife Vickey is the strongest, most loving, greatest wife a man could ever have. Even with her disabilities she should win the Mother of the Decade award. We are hoping to get through the winter without too many colds and hopefully next summer Dr. Holinger can do the throat reconstruction surgeries on both girls. We will be so happy when the trachs are out!
I will post another update as soon as possible but in the meantime please checkout our website or Email me with any questions/comments you might have. Remember, if you are in a similar situation there are always people to talk with who can relate and give you support. Please send Emails!
My Email address is: greg_benjamin@yahoo.com
Our website is: http://www.geocities.com/greg_benjamin/
History
- Blog
- View recent blog entries
- Member for
- 31 weeks 6 days
Location
- Country
- United States
- State/Province
- Illinois
