Surgery here we come

I say surgery here we come with feelings of anticipation for a better future and feelings of fright for the worst case scenario.  The trach fistula has been colonized with MRSA and Staph which has been wreaking havoc on Meg for months.  After we had to cancel a long awaited trip to Minnesota's Mayo Clinic due to her waking up with every color coming out of her trach it was the last bout that her ENT could stand either.  The decision was made that if the infection came back after the last treatement that ended in early December the stoma would have to be closed. We have been running Tobi Nebs for over a month and had to start the bactrim again 2 weeks ago and it is  not doing much.  Surgery is set for the second Wednesday in January to sew her up.  The procedure requires intubation which is what makes me worry - we dont want to end up back where we came from and dont want to face "big" decisions.  She could never go through a trach again - we would not allow it for her.    Christmas came and went fast - it was very wierd to have a nurse in the house in the morning in the middle of our Christmas.  The boys were wigged out.  Better that I got to sleep though instead of being like a zombie in front of the Christmas tree.  I had to explain that to them so they could see that it was a necessary component of life for us to function and it is not what we "love" either.   We have a hearing coming up for nursing hours soon - had to appeal a riduculous decision that came down right before Christmas.  It is always something! Praying for a successful surgery and a great 2011 for Megan.

Dream Calendar

Megan's Dream Calendar Photo.  Well - I did not know it when we shot the session but we were just hours away to being told she was very sick with MRSA.  No wonder we could not get a smile and she was a bit wilted.  If it had been a week later it would have been great.  Oh well - I still love it!

Minnesota Bound

So the last month has been nuts.  We have determined that Megans trach site and right ear have been infected with MRSA and some other strange bacteria...she has been battling the dog ear smell as I call it since the end of July.  She has been treated with a/biotics but it kept returning.  Culture finally found it.  Infections Disease was lame about culturing - they said that of course it would grow bacterias because there would be skin flora in it too...ENT did it and figured it out.    We spent two days in the PICU for a new EEG with an epileptologist.  Seizures are off the charts again and have seen some infantile spasms.  No wonder with a raging infection...that is what happens.  Anything that stresses the body lowers the seizure threshhold and it creates a bunch of problems.  She finished her antibiotic this morning and I have seen some smiles in the last three days which means she is feeling better.  We reculture Tuesday.

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!

Can't believe it is already October in a few days.  Where does the time go?  This past month has come and gone so fast my head is spinning.  I guess Megan being sick all month on and off , mostly on - has made it a bit more blurry than usual.  Hoping we are on the mend now finally.  She went through Rocephin shots (3), 10 days of Levaquin and has about 4 more days of Tobi Nebs left.  If this doesn't do the trick I guess we will talk to infectious disease about an admit for IV a/biotics.  Yuck - makes me sick to even think about a hospital stay!!  Ryan and James are taking turns with their stuff - who is sick, who hates school - who lost a binder with all of their work.  My patience for this stuff is very short these days.  Some of the stuff that is coming home from school is just absolutely riduculous. 

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!!!

Tragic Widnes tot Leoni's short life may lead to cure of rare condition - Runcorn and Widnes Weekly News

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 .

????

I dont even know what to write anymore. I dont even know what to say when people say - I hear Megan is doing great. It is one of the hardest things to answer without sounding like I am wallowing in her disease or a totally negative unhappy, unappreciative person. You would think this should be one of the easiest things to respond to....Great is not a word I would use to describe how Megan is doing...and I feel like an ass for even saying that. While I KNOW that she has made huge progress from last year with coming off the vent and having her trach removed, there is so much still going on every day. Seizures just plain suck. I am not even counting them through the day anymore. It is too sad because I know they are peeling away at her and we have tried everything to stop them. And we have the muscle spasms where she is stiff as a board and crooked all at the same time. It is getting very difficult to hold her and comfort her through these because of her size and her strength. She has a very strong right fist..I have great bruises to prove it. The crying fits from pain are also very painful, for all of us. I am so angry that nobody can stop her pain. It is so unfair to watch this. Yes - I am asking myself quite often why, why, why? And the disgusting stoma that wont close is driving her crazy - and me - it is an oozing snot hole that gets clogged up - so gross. I think she feels like her air is stifled at times because of it and it stresses her out, which then leads to the muscle spasm, which then leads to a seizure, and crying, and on and on - every day - all day - throughout the day. God help her if she does not go to the bathroom in the morning - we just add the stomach discomfort in for some extra fun. I probably sound like an insane person but it is how I feel. It's one of those days that I have had it with all of this and dont know what to do anymore which then makes me feel guilty because in other aspects of my life I know I have so much. Guess I might kind of be feeling like I'll be punished someway for feeling so pissed off. I really feel like punching my fist through a wall and screaming until I have no voice left. Ryan was trying to read Ripleys Believe It or Not to me tonight but couldn't because of Megan's screaming - what else is new. He takes the backseat again.....which I'm noticing is starting to wear on him. He feels unimportant. Sandwiched between James who is the oldest, in high school - funny, and between Megan who is so pretty and so sick and needs so much. I guess I would feel that way too - middle child and 4 years of this.

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.

Is summer over yet?

 

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!

We just got back from the trip to Atlanta with the geneticist that specializes in mitochondrial, metabolic and inborn errors of metabolism. She gave us the swab kit that we will do early next week and send off to Philadelphia for enzyme studies. So far all of the enzyme studies done have matched the muscle biopsy results on other patients with the exception of two - which were both coincidentally processed at the same lab. Sounds like a lab problem on those two. I guess I will be looking for the enzyme studies to show the mito complex IV deficiency again. Hopefully it wont be adding any other complexes to our diagnosis. I will have to schedule Megan for an updated EEG, MRI and MRS. Like what we did in NY 2 years ago. It is important for diagnostic reasons. Right now having this blanket mito label is like being told you have cancer but that is it - that is all you get - no type....

The Dr. does think that she fits the Leighs Disease which is what I have always thought. It is not what I wanted to hear though. The prognosis is very poor. The majority of the children die within one year of onset of symptoms. Others live a few more....7 would be considered old for this disease although there are a couple I have heard of at 9 and 11. Needless to say I am very sad inside and I hurt so much inside.

I swear Megan gripped me tonight tighter than I have ever felt and I dont think it was involuntary muscle contractions. She had her little grin on. I hugged her so tight and kissed her little cheek and told her how much I love her and how special she is. She looked so content and like she understood somehow what I was saying or understood my emotions. I pray that she did and that she knows how much I love her. To look at her lying still sleeping you would never guess anything is broken. She is so perfect and pretty. And soon to be four. My mind started to wander today looking at the boys. I was thinking what age will they be when they lose their sister - how will they deal with it and that it is not a question of if they will lose her, but when will they lose her, and her Daddy - WHEN WILL I LOSE HER??????? I feel bad to even think it - let alone put it in writing. It feels like I am deserting her but I am not. I never will. I need to find my faith and trust that God will do what is best for her and for us and love her as much as I can for as long as possible.

Even though I was sad at the end of the stay in Atlanta, it was good to see Gwen, Mike and Erin. It was wierd with Amber not living there anymore but that is what happens - they grow up and move out. The boys had a ball with Aunt Gwen. While Pat and I took Megan to the Dr. they went to Stone Mountain with Gwen. At the top of the mountain carved in was GARRETT M. Ryan saw it and Gwen said he told her that it was for Megan Garrett. I thought that was really cool that of all things that was at the top, and that they saw it and got a picture of it! I guess she was kind of there with them in a way too.

Summer Already

Cant believe school got out for the boys last Thursday and summer has begun. The month of May was really busy with end of the year awards and ceremonies so I have not had much time to do much of anything.

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.

Bye Bye Trach

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.  

July of 98- Wow!

Today I got the call with the date for the bronchoscopy and the "tentative" trach removal. Monday, April 26th. It is exciting and scary all at the same time - if they take it out and she does great we come home in 24 hours with no trach. If they take it out and she isnt managing they will put it right back in. She is sedated for the bronchoscopy so if the airway looks good they pull it out then and leave it out. I am afraid she will be too sedated to switch over to mouth/nose breathing - too unaware. The other scenario is that we come home and then she starts to get into trouble. That is the worst scenario because then Pat and I have two options - let them reintubate and then re-trach or not put her through the trauma at all and let things happen naturally - whatever the outcome. I dont want Megan to suffer any more trauma naturally but then there is that selfish side of me that just wants to hang on. I am really positive about it but I have to be realistic. Nothing is guaranteed and there is no way to know for sure until it is out. The tests we have and are doing point us in the direction but that is all that they can do. It is a risk. Without risk there is no reward though - that is how everything in life is it seems............

When you come to the edge of all the light you know, and you are about to step off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on, or you will be taught how to fly.

Sometimes I fall a long way before I learn how to fly........

Success!!!

Finally got a call this morning that Megan passed her sleep study. That is the greatest news I have gotten in a year!!!! And the Dr. was certain she would not pass it. He also said she would probably be ventilator dependant for the rest of her life!! Next step is we go in for a bronchoscopy to make sure her airway is good and if so the trach comes out on the spot and we see how she does. I am so excited I cant stand it. Ryan asked if that meant if she was going to be able to eat baby food again and if we could throw away the suction machine! YES AND YES. With a little work - nothing we cant handle.

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!

New hair cut – mixed feelings about this.  Pat is very upset that I cut her hair.  It will be so much more comfy for her.

My fairy princess

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!

 

 

Get Fit Tri

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.

      

Getting Stronger!

 

Today Megan went back in to the hyperbaric chamber with Pat for the first time in a long time. She was pretty smiley after it for a while and now she is sleeping - well - like a baby!!! It was the prettiest day here today. Sunny, cool and breezy. This time of the year through April is really nice. May it is already too hot for me. Unless of course I am at the beach and then bring it on - I can always jump in the water. We had a weekend of family time. Just Pat, myself, the boys and Megan. We went shopping yesterday afternoon for a few hours and then went to dinner together at Buca. Megan did good. She did decide to blow through her diaper 3/4 of the way through dinner which meant I was also wet...I have had worse things happen and it is nothing that James or Ryan have not done to me. Megan just does it still and much more frequently than they did. Still on the ketogenic diet. Seizures are up and down. The mucous and secretions are still very problematic and keeping the colonized bacteria at bay is tough. It is ready to jump on her at any moment. Doing nebs every 4 hours all day and night and doing Tobi nebs 2x day - 1 week on and 1 week off. We were ready to start capping her trach in preparation for a sleep study for decannulation prep but had to halt all of that until we can control this stuff. A vicious cycle. The cold and flu season really needs to end. That will help a bunch I am sure. I am really hoping that in April we can be done with this trach. April 1st will be one year she has it. Feb 19th was a year ago that she was intubated and the last time I heard her little voice. I really miss it. Watching videos of her with a voice really gets me. Have some paperwork to do as always once everyone is asleep. Have to fill out some admissions paperwork for James for high school next year. Tough choices. He wants to go to Tampa Catholic which is private. He tested and was accepted, but tuition is expensive and with Megan's needs it is really scary to assume that debt. What if we cant afford it or have to have him change schools? That would be worse. I want him to have the best high school experience he can. I did not really and wish I would have taken more from it when I could. Regret......His other choices are Tampa Bay Tech Architectural Program and King KAPS Program. Have to wait and hear from these two which are both public and free. He is also going to be going into braces very soon. Ryan got fitted for upper and lower retainers just a few days ago. Think I better go and fertilize the money tree growing in the backyard!!!!

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.

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!!

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.

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.