Tuesday, December 28, 2010
Tuesday, November 9, 2010
Sunday, November 7, 2010
Also have had new hip x rays and both hips are popping in and out.....we now will have to see the orthopedist for follow up and whatever else..I know it hurts. She has been letting out some blood curdling screams. But we will be going ahead with some botox in the legs to help relieve some of her muscle spasms that make the hip thing worse. Cant do it until January 14th though - that is the next opening. I guess it will go fast with the holidays coming and all.
This Saturday the 13th we are heading to Mayo Clinic for them to have a look and see at Meg and maybe get some new ideas - help??? I dont know - cant hurt to try and I have been having the feeling to do this for the last 2 years. So I took the inititiative and faxed her information to them and they called me back and said - yup - we would like to consult with you on her. It all fit in perfectly and it was so easy it must be meant to be. I am always hopeful. Like I said - nothing to lose and certainly she needs medical expertise far greater than I can get here. They dont understand her at all. What gets me is that because she is so pretty I get the stupid comments like "at least sheis pretty" or they think she is not sick because she is not deformed or characteristic looking of a syndrome.....ignorance I guess!
One more reason to make this trip happen is Ryans prayer for Megan.
Dear God, I hope that there is a cure for Megans mitochondrial disease in 2011 or 2012, if she is still alive to get the cure, and I hope I win my soccer game next Saturday. Amen.
Talk about making you want to cry - what a deep thought process going on there.
Ryan is finally wanting to participate in things outside of our house. He is playing soccer and loving it. Im so glad he does not feel like he has to be here all the time in case something happens. James is loving high school. He is experiencing a little freedom that is new. I remember feeling too big for my britches and having to be reigned in a bit and now I am doing it to him. But I must say he is much more understanding of it than I was. I think girls must be worse. His back brace should be able to come off around Thanksgiving. He goes to the ortho surgeon a couple of days before and I hope his fracture has healed. Then well start PT for his core muscles since he has not used them in several months. Another set of appointments!Uhhh!
Well that is about all I can think of. Anyway have to go start meds for Meg and vest treatments, etc. She is awake and waiting!
Wednesday, September 29, 2010
Still feeling kind of out of sorts with everything. I am in a spot I don't really recongnize. Not miserable - not happy - not anything. Maybe just here....
I know what my responsibilities are - who and what I am responsible for and I am getting the job done. I wish I could say I was getting it done with more UMPH though instead of just getting it done.. My get up and go got up and went??? That is what it feels like. I don't like it so I have to fix this. I want to feel connected to everything instead of just existing FOR everything.
The next couple of weeks are more follow up visits, blah, blah, blah.
Ryan starts soccer this coming Monday - that is exciting - it will be his first team and I can't wait to see him play. James is in a Boston Brace - dont know if I said that before. He fractured his spine between L4 and L5 - probably in football but who really knows. He hates it. It looks like a medieval torture vest!!
That's all I've got!!!
Friday, September 17, 2010
Tragic Widnes tot Leoni's short life may lead to cure of rare condition - Runcorn and Widnes Weekly News
Another one gone from a mitochondrial disease - two days shy of her fourth birthday. Crying for another lost little girl .
Tuesday, September 14, 2010
We do have some nursing and I get to sleep at night now. Huge bonus. It is helping me to feel more human. Day nursing is not so great I find. They have NOOOO clue what to do with Megan. The nurses that are here for a few hours a day seem to think if we just keep pumping drugs into her and request more and more, stronger and stronger it will help her. So what - drug her up like a patient in a mental hospital???? Would they drug their kid up that way? I think not. She is cognitive of her surroundings and loves, loves, loves me. So lets take that away from her too....they are callous and ignorant mostly. But I am in a catch 22 - I can not do this without people that can work a gtube, feeding pump, nebs, meds....a second person to help carry all of her crap to ALLof her 10,000 appts a week...it is exhausting. And it is stressful to have to manage all of their personalities - they are all women so lets face it - it gets interesting. Of course there is always the sunny disposition I am always supposed to have with them or else I am a bitch. It is hard to always have the sunny face for everyone around me - my kids, my husband, my mom and mother in law, nurses, doctors, therapists...........AAAAAAAHHHHHHHH! I just want to be left alone.
Ill figure it out - probably by tomorrow morning, and hopefully I'll deal well for another while...
I absolutely love Pat and all of my children and the rest of my family and would die for any of them- it all just is a bit much sometimes, thats all.
Thursday, August 19, 2010
Okay – I know it is August in Florida but I could not resist this winter hat. Megan may get to wear it a couple of times this coming winter…. The good news about this hat is it is actually a size 3 which is about the right size for her age. We have always had to buy hats in the 6-12 month or 12-18 month size until recently! I think that is a good sign as far as head growth since I have been told it is too small for the rest of her!
James started high school last week and Ryan starts 3rd grade next week. Looking forward to some quieter days without any boys fighting!
Thursday, July 1, 2010
Tuesday, June 15, 2010
Megan is doing okay so far with the trach gone. We have had some trials already that although were scary proved once again she is tough. A week after she was decannulated she came down with bacterial bronchitis - compliments of Daddy and James. James was down with it bad so I was really afraid of how it would affect Meg. She did need three abiotics but the fact that she did not need oxygen or breathing support via equipment OR a hospital is what counts. I spent an entire week doing nebs and vest therapy. I dont mean periodically either. Every two hours I did nebs and then vest that takes 30 minutes. So it was an hour of treatments every other hour. I think I almost went crazy at one point but reminded myself that it was okay since we were not in the hospital and at least at home doing it. NOOOOOOOOOOO sleep that entire week did not do much to help ease the craze.
Her stoma is almost closed. It is a little pinhole now and hopefully it will close over the next few months. Dr. does not want to stitch yet since it is invasive and requires a two day stay and cutting the skin inside the throat behind the stoma. I agree that she does not need that and we dont need to borrow trouble. She is getting so much stronger in the neck and trunk since the trach is gone. Sits up nice and straight and is activating her own head movement. It is subtle movements up and to the sides but from nothing that is huge. Keto diet is coming along. She is on ketocal now which is milk based and digesting it and growing!!! She is getting nice and full looking. Heavy feeling too.
Make a Wish was here last night to meet with us and we decided on a room redo. New wood floors instead of carpet that is gross from formula and meds. A beautiful outdoor fairy wall mural - some built in shelving to the cieling around the window. A beautiful little girls palace with much more space and hidden medical stuff. I get to relive my dream room with Megan. I am excited.
Traveling to Atlanta the week of the 28th to see the geneticist. Brand new buccal swab DNA test that screens for about 600 different metabolic mutations. Her mito geneticist is certain that a metabolic condition triggered the mitochondrial damage. Although the mito damage is the secondary disease it is the bigger problem not due to the nature of it. If we can find the metabolic primary portion - who knows. Maybe stem cells?? I have hers and Ryan's cord blood stored. Another big deal.
All in all it is moving along. Of course out daily challenges are still large they are much more manageable. Especially since we can move much more freely without equipment. Only a feeding pump and diaper bag. Woohoo!!!!
I know this is a run on but it has been soooooooooooo long.
Wednesday, April 28, 2010
Decannulation done. Trach out as of 4pm on April 26th. Hello Kitty is protecting the stoma which will take about 3-5 months to close, unless ENT stitches it shut first which is what I am hoping for. We see him tomorrow morning. Feel like a ton has been lifted off of us – and Megan looks so much better. Swallowing everything is a bit of a challenge and so is clearing the stuff in her chest, but I think she is doing okay . Really nice to hold her without something getting in the way. Tomorrow is Pat and my anniversary and i cant think of a better present.
Wednesday, April 21, 2010
Wednesday, April 7, 2010
Tuesday, April 6, 2010
Sometimes I fall a long way before I learn how to fly........
Monday, March 29, 2010
Lots of stuff happened in the past week. James got his braces on today. Should be about 18 months to a perfect smile. He still looks cute. Braces are not what they used to be. Megan had her sleep study last Thursday night to look at decannulating the trach. Dont have the results from the Dr. yet officially, but I think the data they got was in her favor. I hope it was in her favor. She was very mad about the entire thing – she knew she was in the hospital for sure! I spent the entire night standing at the side of the crib she was in so she would not scream and they could record some sleep material. It was a night to remember!
Friday, March 19, 2010
Could not resist – she was sleeping so I had to sneak in the fairy wings and the wand – I could never get this if she was awake!
Saturday, March 13, 2010
Today was the Get Fit Tri – Lance Armstrong Live Strong Youth Tri Series. It was the second annual and the benefactors were once again Megan and this year Clouds of Hope was included. Clouds of Hope is the NFP my friend Renee created (she is also fighting a battle for her youngest daughter) that is working on getting the all inclusive park built here for all children to play – differently abled ones too. Megan was in the calendar that her daughter was in last year also for the park. Beautiful day today. Girl Scouts did an over the top job again and worked their little butts off – their Mommy’s too. Sponsorships to get this thing to happen were harder to come by this year too which made it even more challenging. James participated again – Ryan says if it happens next year he will do it too, and so will Daddy. Brenda Golterman, Beth McCullough, Carole Dale – women I respect and admire. They are teaching their girls right. No doubt about it. We are blessed to have people like this i our corner.
Sunday, February 28, 2010
Thursday, January 28, 2010
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
Wednesday, January 20, 2010
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.