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Thursday, January 28, 2010

Seeking Help – Draft Letter


My typical day starts with medicating Megan beginning at 6:30 am & continuing until approximately. 9 am. This allows for preparation (crushing, mixing) and administration through her G-Tube and absorption. Once done with this her daily feeding routine is started. It consists of enteral feeds that run all day in increments of three hours/one hour off throughout the day and night to obtain nutrition. All basic daily activities and care are completely performed by me.  Placement, positioning, suctioning, venting, feeding, changing, play, interaction, seizure monitoring, medicine preparation and administration, timing of all meds and feeds. Making sure all of her medical equipment is functioning properly, cleaned and medical supplies and prescriptions are ordered and on hand. Doctor visits for continuing and urgent care, follow up for all medical needs, health insurance and billing issues (phone calls for mishandled claims) and coverage concerns are also part of caring for Megan. There are so many specialists to follow up with I cannot count off hand. Hospital stays are also a frequent part of Megan's life.


Megan cries much throughout the day for unknown reasons to us.  She cannot talk so crying is the only way she can communicate that something is wrong. Megan is severely physically and mentally disabled. Born with a bi-lateral sensioneural hearing impairment and later diagnosed with a bilateral cortical vision impairment has left no part of Megan that functions normally. She cannot hold her head up, cannot sit up, crawl, or walk. She cannot speak any words. She cannot hold anything in her hands. She cannot reach for an object nor grab one. Opening her hands is problematic. She cannot scratch an itch if she has one, rub her eyes if she is tired or reposition herself if she is uncomfortable. Megan does not sleep well or consistently. Megan receives physical, occupational and speech therapy every week Speech is more for oral motor and feeding skills which Megan no longer does by mouth since February of 2009 when she was intubated for 6 weeks which eventually led to her undergoing a tracheostomy which to date is still in place.
  Megan wakes all night long, sometimes for an hour or more at a time.  It can be due to seizures, reflux, suctioning or all of the above.  Many nights I get a total combined 2-3 hours a night (sometimes we have an all-nighter) which can last for days on end until I literally am so tired that I am nauscious. The floors and walls appear to be moving and unstable when I walk as if I were on a boat.  Megan's appointments that require me to travel don't care if I slept so that I am alert to drive.  This is dangerous.   I am physically exhausted and emotionally numb at this point.  There are days I feel like I cannot go for another minute, let alone another day.  The choice to slow down is not one that I have, nor does my husband.  We have two other children ages 7 and 14 that also need us to care for and love them. I cannot provide care 24 hours a day. Nobody works 24 hours a day every day -  not even in prison camps.


Arranging help to get to the necessary medical appointments is a difficult task, especially if they are unexpected, like an acute illness.  Her tracheostomy requires that somebody has to be able to drive and somebody be able to care for Megan if she needs suctioning.   The same applies for my other two children.  I am unable to seek medical care and necessary treatments they need due to the travel difficulty and/or not having anyone capable to watch Megan so I am able to take them without her.  It is not wise to take her to a pediatrician's office for one of her sick brothers if she is well as she is very susceptible to illness.


My other two children also have needs.  My 14 year old has a mild scoliosis which has been assessed by an orthopedist and confirmed by MRI.  He has been ordered to receive PT which has been very intermittent due to my inability to get him there.  Neglecting this could lead to serious and more severe scoliosis with ensuing complications.  My 7 year old is generally healthy.  He is in the second grade and still a child that needs much guidance and support with his schoolwork and interaction with his parents.  Not to feel that your parents have no time for you because they have to focus on another child all the time. Finding the time to listen to him read should not be so hard or near impossible some evenings. Add in a sporting or school event for either of them and it is simply too much. Mealtimes are not possible in our home as a family.  One major reason is the inability for an adult to prepare the meal so that we can eat together, or at least take turns eating with the boys.  We used to eat together every night up until about a year ago and would have Megan at the table and comfort her as best as we could. Our family is split in too many directions and the unity that was once there is hard to remember. It is very sad that our family is forced to live this way because we do not "qualify" for nursing help for Megan or if we qualify there are no funds and we are told the wait is 5-7 years long. My family is in crisis and is at risk. Can a family like ours survive the wait? I understand the statistics of families with special needs children are at a higher rate for divorce and for siblings to have emotional problems. I can see why this happens. To raise children is a responsibility and job that we desired and strive to do our best job to raise happy, successful adults. Meeting the needs of our normal children is falling to the wayside and it is not fair. As a married couple we have been blessed to be partners and friends with the same core values and beliefs. We are productive members of society and live with morals and ethics that have gotten us through much of this with Megan. We also feel like because of this we are being punished. Why does a family that has less than we do deserve a better quality of life for themselves and their children than my family? Their child will have the label "less fortunate" but in reality my daughter might actually be the one that is "less fortunate". Maybe their child is mildly impaired and is mobile, but the family has not strived to reach their potential as we have while my daughter is severely impaired with no mobility. The other family may receive in-home nursing assistance to help with the care for their child allowing them to partake in other parts of their life, while my child will not therefore disengaging us from life. Nursing care is unaffordable on any income level. $35 per hour is not feasible. Why income is so relied upon for this service does not make any sense.


I have had comments made by professionals suggesting my husband could help more. This leaves me almost speechless as they have no idea the schedule he keeps to maintain our family. I question what they think is going on. Do they think I have all the responsibility of caregiving for Megan and Pat comes home and sits in a recliner with the TV clicker. I am the primary caregiver but certainly Pat participates when he is home. My husband's work schedule is unforgiving as he is self-employed and owns a small business.  He is a public adjuster and insurance loss consultant.  He handles many catastrophic claims for personal and commercial property owners.  His schedule requires him to travel almost daily with some trips necessitating overnight stays as they can be accross the state or out of state.  In catastrophic situations such as hurricanes he can be gone for the entire week with a trip home on the weekends then back to the loss location.  I realize that we are not in a situation like that now but these claims can go on for years until settled which does require him to travel for depositions, appraisals, on-site inspections with other professionals etc. until it is closed.  For instance he can still be required to travel by plane for a claim from 2004 today. 


His local client base is generally within an hour drive from Tampa and entire days are dedicated to time spent out of the county.  He usually leaves by 7:30 am and returns home on an early night at about 6:00 pm but it can be as late as 9:00 pm.  Average is 7:00 pm.


As he drives sometimes all day to appointments he cannot assist overnight due to the hazard it would pose to himself and others.  It would be irresponsible as we could not afford for him to be out of work due to an accident nor does another family need to suffer a loss due to an incident he could cause.  If he does not go to work and bring business in he does not receive pay from anyone.  He is the employer.


When he returns from work the other children may have sporting, school functions or homework that requires one of us to attend to while the other attends to Megan's medications, trachea care, bathing, glucose and ketone monitoring among other things. I can stress enough how she requires constant and continual assistance and can not be left alone.


I work for my husband's company as well which has afforded me the opportunity to work from home by logging in remotely.  I handle payroll, accounting, 401K plans, office supplies, tax issues, workers compensation, property, general liability and health insurance.  There are also many bonds associated with the adjuster licenses and general licensing renewals for him and the other adjusters and employees who work in the office.  I function in an office/accounting manager/human resources capacity. It is a small business that requires us both to wear many hats.   I still work as it is necessary for our income.  If he had to hire someone to replace me the financial burden would be greater than what I am paid. My position is a full time position. It is very difficult to work under these circumstances with little sleep.


My own health concerns are not able to be addressed. I do not have the ability to schedule a doctor's visit for myself. I absolutely cannot get sick. Megan's care has no flexibility and will not wait until I am better. It is a petrifying thought to think about the what ifs. Lack of sleep, high anxiety and stress and neglect do take its toll on your mind and body. My husband and I are aware of the consequences and the irreversible damage this can put on your vital organs.  We both run at a pace that most people collapse after a couple of days like ours.




Management of Megan and this devastating disease is a full time job. She is considered chronic and medically fragile and/or complex. Her condition is neurological, metabolic, and muscular. Her diagnoses include encephalopathy, intractable seizure disorder, infantile spasms (Lennox Gastaut Syndrome), neuromuscular disease, mental retardation, GERD, hearing and vision impaired, and failure to thrive. From day to day – sometimes hour to hour her condition can change dramatically. A muscle biopsy in 2007 revealed mitochondrial dysfunction in Complex IV(COX) of the respiratory chain. The mitochondria are the powerhouse of our metabolism. At this point there is not a cure for Megan's disease. Proper care is essential to trying to avoid catastrophe and manage her symptoms as best as possible. . We desperately need some help to eliminate this area of medical need that has and is going unmet for our little girl. The needs of my other children, a household and work still exist. Basic human needs for me and my husband are going unmet.


It is a tragedy that we work so hard and are entitled to so little. Where is the quality and justice in this for our family and all of our quality of life? Megan's life span is predicted to be short due to the severity of her disease. It is my greatest hope that while she is here with us that she knows the best of this world that we can get some help so that we have the opportunity to enjoy her and love her the way any child deserves and hold the best memories of her in our hearts. Megan is a beautiful child that we are privileged to have been given. She has shown me love in a way I never knew existed and that many never will. The positive changes she has brought to those who know her and the lives she has impacted is greater than you would expect. Her smile gives me a feeling that is unmatchable. God created her different but I am certain he did not mean for her to suffer or for the rest of us too either. Our wanting help is not to shun our responsibilities. It is because we realize without help we will not be able to fulfill our responsibilities as parents to all of our children at this pace.

Friday, January 22, 2010

An Actual Smile!!

This says it all I think. The best day in soooo long. Still some crying - but some smiling too - about equal amounts!!

Wednesday, January 20, 2010

Heading Home

Tomorrow we get sprung! I cant wait to get home. Megan looks better and I hope that we got rid of this infection for real. It took the lab 7 days to identify the bacteria. It seems it is one of the rarer ones that they see. I cant even pronounce it - alcaligenes xylosoxidans - it is one of those that only IV antibiotics works on and it is resistant to almost all. At least we know what it is and can treat it. The bad news is that now that it is colonized in her trach she is more susceptible to it, just like psuedomonas. When infectious disease does see this one it usually is in a trach because they like it there. It is a common bacteria in our environment - our houses, etc but usually it does not cause infection. Key word there is usually - that does not apply to Megan. The change in her skin tone and eyes is so obvious. This thing really had a hold on her. Today was the first day she looked this good and it made me see how bad she has been looking. It is hard to see it when it develops every day right in front of you! Been talking to the pulmonology doctors about decannulation all week and Pat and I have discussed our feelings with them about it and how strongly we feel. This trach served its purpose. It was there to deal with an acute illness and recovery but the acute illness is gone, her airway is fine as are her lungs. Time to get rid of it. The Dr's point was that she can develop a respiratory infection after it is out and can have trouble. My point is that she is developing respiratory infections from bacteria now and is having trouble.........her risk of developing the infections goes down instantly once the trach is gone - no more open wound in her neck that allows germs to bypass her natural defenses and filters in the mouth and nose. And no hands constantly touching it, suctioning - we eliminate so much exposure. Also no more psuedomonas or the other thing there either. Cant live there anymore and wait for an opportunity to attack.

The boys have been wonderful again. James had finals last week. What timing - finals while your sister is in the ICU, your mom is gone so things are out of sync already and then final exams. Talking to Ryan on the phone is sad - he asks with such desperation about when I will be home. To top it off the boys had no school Monday and Tuesday and then Pat had to go away for business and flew in about an hour ago so both of us were gone. Grandmas were there to help out but they want their "normal" home life just as I do. Pat and I have seen each other in passing for weeks now. Really strange.

I asked Maxim Healthcare for a night of nursing. Should be $385 per week for one ni of nursing. $1540 per month for 4 nights of sleep. Who knew sleep could cost that much - 385 a night? I guess sleep can be considered a luxury item or pampering in some way. Like a spa day!! That makes it seem better I guess.

Megan is sleeping - O2 is 94% and heart rate is 73. Just last week her heart rate was averaging 180 and as high as 210 and she needed oxygen.

Thank you God - thanks for seeing Megan through this one too. Please see her through a healthy and successful decannulation so she can enjoy a better life. Ryan asked me why you just cant fix her. I told him I dont know the answer but I know you dont want her to hurt either. He asked if she would be able to go on vacation with our family this summer. I told him I hope so..and to aks you for it when he prays and I will too. Amen.

Wednesday, January 13, 2010

4 AM

Here I sit watching Megan sleep at 4 am in the PICU. I am so tired but can not sleep. I was lying next to her holding her hand and thinking of how I just want to play with her at the beach. Let her feel the water on her little legs and smell the air and watch her smile. It seems like an impossibility and it makes me cry. I am trying to not make sound so no one hears but it just comes out anyway so I got out of the bed to ...... I dont know what I got out of bed to do, but here I am. The pain in my body that I feel hurts so bad. It feels like it is crushing my midsection and my chest. I feel so sad and at such a loss for everything. The reality of this whole thing feels like too much right now and I want to have someone help her so badly but am so let down by the incapability of those in the position to do more to be so clinical and unable to know what this has and is doing to our world. My poor baby has such a poor existance because she is always so sick with some kind of acute illness that seems unavoidable with this trach. A sterile world is where she would be able to escape the germs. That is not possible. She has been crying for 10 weeks with one type of infection after another all because she has a trach. She has been able to wean from the ventilator and breathe on her own. In order to get the trach removed she must be able to have it capped off and breathe completely through her nose and mouth again....but you cant do that if she has an infection in there so we are stuck - being sick - losing out on the things that we should be experiencing and enjoying. She does not have to be normal to live life. Just not sick. Why??????????????????????????????????I dont understand so many things. Why does this happen to beautiful little babies. Their lives should not be filled with such torment and pain. I love to just look at her. She is so pretty and so innocent and pure. So unscathed by the cruelties and callousness of all of this. I am trying to absorb all of the discomforts and pain for her but I know that I can not. I can not absorb them for her or absorb them for James and Ryan either. They worry and fear for Megan too. I dont know what do with this anymore. I feel like the walls are closing in and I cant stop them - suffocated and desperate for someway to stop this. You know the hourglass filled with sand and how they are always used in a race for time and they are almost at the end. I see myself inside one of those and the sand is at my neck. James is 14 this month and Ryan is 7 1/2. Their lives are racing past me in a blur as Megan's is too. How did the last three years happen. 2006 was the last time I can remember happiness. The thought of our new baby and growing our family. We were so blessed. I knew it then too. Please know that I could care less that Megan is disabled or that she will not ever know the same things that she would if she did not have this disease. I think she is the most amazing, beautiful, resilient little girl in the world and am grateful that she is my daughter. I am proud of her. She has changed all of us forever and has touched us in a way that she never would have been able to if she were "normal". I love to see her smile, braid her hair, kiss her ear and watch her react with anticipation for me to do it again. The glimpses of her personality come through and I long to see more of it, the way she is when she is not ill. I pray that we can get this trach out successfully. Go to the beach with the people I love and play with Megan in the warm water in her pink tutu bathing suit, build in the sand with Ryan and hang out with my teenage son - laugh at his take on things - have time with my husband without feeling like we are in a pressure cooker and remember why we are together in the first place and look at what we have created together. I pray that we have the strength to endure all things good and bad and remain together throught the rest of our lives, the way we intended it to be.