We have been denied nursing yet again! Yes we got him put on the Medicaid waiver critical list and yes, we got put at the top of the list. But when we sent off the paperwork to see how many hours of nursing he would qualify for, it came back denied because he doesn't meet the level of care for a mentally retarded child. Of course not! I decided to write an open letter to the media. I sent it to all three local news stations and the local newspaper. I also had my advocates at Family Connections forward the letter to every influential person they knew including senators and the Governor. Here is a copy of the letter
To Whom It May Concern,
I need your help. I am trying to raise awareness for families with medically fragile children. I am the parent of a medically fragile child. My name is Rene ****** and my youngest son is Tommy. Tommy is 14 months old and is medically fragile. I cannot work outside the home because I am his sole caregiver. Because of the laws in this state governing Medicaid, my family cannot receive services that would make our daily life with Tommy easier. My main concern is that we do not qualify for home health nursing because Tommy does not fall into the specific categories that Medicaid deems critical to receive services.
These categories are: Being mentally retarded or have a related disability, having HIV/AIDS, having a spinal cord or head injury, or mechanical ventilator assistance for breathing. Because Tommy does not fall into these categories, we have been denied a Medicaid Waiver and home health nursing. Now I will give you some background on Tommy so that you may see what at injustice this is for him and our family to not be getting the help we need and deserve.
Tommy was born 7 weeks premature on September 25, 2006 at the Medical University of South Carolina. He was diagnosed with multiple congenital heart defects (CHD) that require him to have 3 open heart surgeries before he is 3 years old. These surgeries will not fix his heart, but merely reroute the way his body pumps the blood so that his heart will not have to work so hard. Tommy only has one ventricle (or lower chamber) in his heart instead of two. He has very low oxygen levels in his blood and he is often blue. So far, he has not been able to have the surgeries he needs, but has had two other open heart surgeries to help him along until he is healthy enough for the rerouting surgery. The first one was at 4 weeks old and the second one at 9 months old. After the first surgery, he spent 5 weeks on a ventilator. The vent caused scar tissue in his windpipe and Tommy could not breathe on his own. He now has a "trach".
A "trach" , also known as a tracheostomy tube, is a plastic tube that is inserted through a surgical opening in the windpipe through the neck so that Tommy can breathe on his own. It also leaves him very open to germs, dust, fur, or any other small foreign object in the atmosphere. We cannot vacuum with him in the room or use anything with a harsh smell because it can burn his lungs. We must also manage his secretions by suctioning them with a small machine and carefully care for the area daily. He is also very susceptible to germs and must be kept at home as much as possible.
He has a birth defect that affects his swallow. The clinical name is Congenital Cricopharyngeal Achalasia. It means that when Tommy swallows, only a little gets swallowed then his esophagus clamps shut and the rest of the saliva, food, etc, then slides down his windpipe into his lungs where it irritates and causes him to have scar tissue. The condition is so bad now that he often has asthmatic type episodes of wheezing and coughing to the point he can't catch his breath. Just last week, a mild lower respiratory infection that would give a typical child his age a runny nose and a cough put him in the hospital for over a week. Since his second heart surgery at 9 months old (done in June of 2007), Tommy has been oxygen dependant. He wears a small collar over his trach that is attached to about 15 feet of tubing that is connected to a machine providing oxygen to him constantly. If we go anywhere (rarely, unless it is to the doctor), we must take tanks of oxygen with us.
Lastly, because of Tommy's poor swallow, he cannot eat by mouth. He has never taken a bottle or eaten anything since birth. He is fed through a tube in his stomach called a gastronomy tube (g-tube). Twice a day, and then again as he sleeps at night, I hook him up to a pump that feeds him Pediasure. I have to be very careful to measure exactly how much he is getting and keep track of the amount of calories he gets in a day.
A typical day for us begins with a breathing treatment with a nebulizer to help open Tommy's lungs. This takes about 15 minutes. After it is finished, I move on to caring for his trach, which includes cleaning the site with peroxide and saline, then rinsing and drying. I then apply ointment to any spots on his neck that may have been rubbed by his ties. The trach is held in place by foam and velcro ties. They must be changed daily as part of this care. I must be very careful because his trach is his only airway. If he wiggles or coughs too hard, the trach can accidentally come out while I am changing these ties and Tommy will not be able to breathe. This is a two person job. Right now, my nine year old son is our extra set of hands.
After we clean his trach site, we clean around his g-tube and coat the skin around it with ointment so that his stomach acid doesn't burn his skin. We then change his diaper and dress him. Next it is time for his morning medications. Tommy gets 4 different medications each morning, 2 in the afternoon and 5 each night before bed. After his medications have been given, if it a day he has therapy, then a therapist comes to our home for an hour to work with him. One day a week for occupational therapy, and one day a week for physical therapy. Tommy cannot sit, crawl, walk, or navigate on his own yet. Twice a month, an early interventionist comes to our home to work with him as well. If it is a clinic day, which is approximately once a week, we load up oxygen tanks, suction machine, emergency bag with his trach supplies, his feeding pump and a full size stroller to carry it all into our van and drive to MUSC.
Tommy usually takes a light nap after his afternoon feeding and a longer nap with his dinner feeding (at about noon and 5 o'clock) He gets a breathing treatment every 4-6 hours depending on his level of wheezing. I must stay by his side 24 hours a day in case of an asthma attach, a mucous plug in his trach that I must clear so he can breathe, and just to monitor his coloring and demeanor. He is first and foremost a child with a severe heart defect. He is susceptible to cardiac arrest at any time. He also cannot make a sound with his trach. I must monitor him closely at all times.
In addition to all that Tommy needs, we are a homeschooling family. Tommy can pick up germs anywhere, so to cut down on the exposure and because Tommy is frequently an inpatient, we decided that homeschooling was best for our family. I teach my nine year old at home. He is my extra set of hands with Tommy and my extra set of eyes to help keep an eye on his four year old brother. We do our best to not only take care of Tommy, but to do the typical family things, like clean house, do laundry, grocery shopping, and do school work. There are many things we can't do as well. Things like take a walk, go to the mall, play outside (because I cannot supervise them and be with Tommy at the same time), wear perfume, have friends over, take a nap, take a shower (unless someone else is sitting next to Tommy), or sleep in my own bed. For six months, I have slept on my couch with a video monitor in Tommy's room so that I can see and hear him while he is sleeping. There have been many nights I must get up to clear his airway for him. Sleeping in my own room would be too far away from him to hear or to get to quickly.
So you see, I am in a difficult situation here. Home health nursing would give us the much needed help we deserve. Even though Tommy technically qualified for a Medicaid Waiver and is considered critical, he was denied home health care because he does not meet the cookie cutter standards that Medicaid has in place. The only help we receive is through a grant from Carolina Children's Charities, who graciously gave us a grant that paid for 8 shifts of nursing so that we could have the much needed help that we need. However, since the grant was only enough for 8 shifts, once we have expended them, there will be no more nursing assistance. We cannot use typical respite care because due to liability reasons. A typical respite worker may not suction Tommy's trach, or give him food or medicine through his g-tube. Even if I could work out a schedule for Tommy to not require food or medicine during his respite time, there is no way around not suctioning his trach. It is his airway, and if it is not kept open, he will die. He could use an off duty nurse for respite, but again, we don't qualify for this level of care.
Tommy needs skilled nursing care with a person experienced with premature children, heart conditions and tracheotomy care. A nurse must be in our home who can assist us with his care, and who knows how to administer medications and feedings by g-tube, CPR with a trach, what to do if his trach came out, and general pediatric knowledge. We cannot be the only family in this state in our situation! Help us please to raise awareness that not only do our laws need to change, but to alert the general public that there is a need in our community for assistance for medically fragile children. We should not be discriminated against because we are on Medicaid. We deserve home health nursing. Tommy deserves it.
Thank you for learning a little about us. Please feel free to contact me at the address, phone number and email below. Something needs to be done for Tommy.