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Thursday, September 29, 2011

Longest cardiology appointment ever..........

We went in for an annual cardio check up today - I am plain worn out.  We were gone for five hours at their office but it was the most complete and thorough appointmet I think I have ever had.  No messing around - EKG, Sonogram of heart - exam - halter monitor - wow!  And a great doctor.  Very in tune with kids like Meg and what to look for.   Meeting with him made all the wait times in between worth it.  Heart checked out good.  Apparently the mitochondrial disease has not affected the heart from the standpoint of it pumping and beating.  That is great news.  I had a lump in my throat while we waited to hear.  The heart and brain are the organs that use the most energy.  I feel relieved.

Decided that tomorrow we are going to go back in to the HBOT chamber for 90 minutes a day.  Got to just do it - help that brain out!

Tuesday, September 27, 2011

New twist

Okay - so here we go already.  It is not even 8 am and I have more nursing crap already.  Agency thinks they have a nurse that will fit and wants to do M,T,W, and Th.  Going to meet her Wednesday for the first time and see.  So I think that this might smooth out pretty quickly and the night nurse I have that has been doing Friday, Saturday and Sunday decides that she is going to ask for MTW and is thinking that she should get it and the new nurse should take her nights.  Problem with that is the new nurse could work the nights that were open - not the nights the other nurse has.  My stomach is in knots.
So far this week I have cancelled Megan's cardiologist appointment and James appointment for a filling and it is only two days into this week.  I guess everyone has to wait until I am steadily getting sleep so I can make it to the appointments.  They are going to stack quickly.  Megan's pulmonology appointment is on hold too now..............

The worst part is my Mom is leaving on Sunday for New York to help my brother out with my nephew.  I do not know how long she will be gone.....she helps me a lot and is available if there is a 30 minute window where I can crash like I did yesterday afternoon in between Ryan's podiatrist appointment, the orthodontist and his homework.  30 minutes helps!!!!  Not having to arrange her to be here makes little things like that possible.

I am so frustrated and upset.  I am so sick of everything being like this.

I wish I could tell these nurses to go ***************.   I hate having to depend on strangers.  It sucks.  Especially because I am such an independent person.  It absolutely kills me to not be able to take care of things for myself and my family the way I know I could and feel that I should.  

I feel angry - but at who?  Myself - Pat(????-why) -  God???? 
Yeah - all of the above. 
I just want some normalcy and peace and not to be on the stresscoaster.   I am so tired and feel defeated today.  Sobbing at 8am over things out of my control. 

Megan is lying here next to me drifting in and out of sleep.  I feel guilty for all that I just wrote when I look at her.   Not her fault and it hurts my heart that I feel so defeated as a result of her disease.  But not because of her.  Might not make sense but I know what I mean.

Tears are put away - going to get on with the day.  Start meds, nebs - work - I can't contain my excitement. 

Sunday, September 25, 2011

So glad it is the beginning of a new week.  Last week is one I would like to wipe from the calendar!  Megan is on bactrim again for a bacterial infection.  Second one in a month.  Tuesday night she was up all night crying and flailing around.  So Wednesday I spent the morning in the Dr. office - on about an hour of sleep.  Then I got to clean up and go to a meeting at James school which I dont think I was alert enough to convey what I needed to.  Then off to drop James at PT - while he was there I went to CVS to replenish Megan's supplies - picked him up and walked in the door at 5:30.  By 8:30 I was almost in a coma I was so tired.  Thursday morning we were supposed to be at All Childrens for an ABR that we waited 2 months for the appt and had to cancel it.   Of course next available is now in November.  Thursday afternoon was a mess of appointments for James.  I was trying to work on stuff in waiting rooms to catch up on everything I am behind on.  Proved not to work out so well!  So now I am frustrated because I cant seem to accomplish anything completely and I come home and try to work on things.  I open a package containing Megan's most recent MRI report and a disc of images.  You know I had to see if I could look at the images.  Usually I can't because it requires medical software to open and read but this one opened to my surprise.  I have seen the images before so this one was really upsetting to see.  It showed severe atrophy - especially the left side. the left side looks so little and like there is so much space in there.   It is not that I don't know that her white matter is vanishing but I guess you hope maybe it slowed down or stopped happening.   How do you stop a progressive disease?  If I knew the answer to that question.  Talk about helpless.  Of course I am totally sad now but can't show it - still have kids, dinner, Pat, Megan....
I get quiet and just go through the motions.  When the nurse got here at 10pm  I could not wait to go to bed and just sleep so I could stop thinking about it.   
On Friday morning I feel better - still a little far away though.  Definitely ready to accomplish all the things I need to.  Had to start out right away trying to solve nursing dilemnas.  I have two nights that need to be staffed. Each of the night nurses want off of one of the nights they do.  So I start on that and am thinking we will figure it out to accomodate everyone.  I will make it work even if I have to hire someone myself to alleviate the nurses from a night a piece.  Then the rug gets pulled out from under me - the nurse who is with us the longest and is who I feel closest to our entire family and we are very grateful to have tells the agency that it is not just one nite she can't do - she quits completely - with no notice.  I can't help wondering why?  What did I do?   I am baffled and can not understand.  If it wasn't us then why no notice?  You only do that when you are angry or something.  Otherwise you give notice, right?  Ryan asked me why she quit.  I said I dont know.  She did not tell me.  She told the agency.  He said why didn't she tell you?  I thought she was friends with us.  Although there is not any obligation and the proper procedure is to tell the agency there is a bit of personal dynamics that come into the whole situation. Lesson learned - dont expect people to act the way I would.  They are not me and my expectations are unrealistic.   My feelings are really hurt but I have to put it into perspective.  It is a job and a business arrangement.  The job is to care for Megan.  Plain and simple. I will make sure to keep it that way from here forward. I have to move past it and figure something out.  There is no time for setbacks and stumbling around when it comes to Megan.  It affects everyones quality of life in this house as well as our mental health and ability to be productive from day to day.  As I am gaining more experience in this area of my life I am starting to realize that some of the stories I have heard about these awful parents are half truths because the parents get burned out on this kind of crap and have to draw lines or put up a wall to keep it business - no friendships or weakness because then it gets complicated and it cant be. Easier said than done.
To get a good fit - now that is the focus.  Megan is sensitive and too many caregivers is upsetting to her - and me.  Too many cooks in the kitchen kind of thing.  Just having someone in your home is strange.  You get used to it because it is necessary to sleep but it is NEVER normal.  It took a long time for the boys to get used to it.  They know that it is necessary too for all of us.   They remember when we had no help.  It has only been 13 months that we have consistent nursing.  The year prior to that I got my mercy 12 hours per week so I could sleep one night a week.  When Megan was on the ventilator I did not even have that so I am grateful to have the help.  Very grateful to have the help.  The cons too it are the people in your house and juggling the various personalities and any issues they may have.  Whether the issues are with the nursing agency, notes, their own lives.  We have issues too. The same as everyone else  - and we have the weight of worrying all the time about Megan and dealing with the fallout it has on James and Ryan and us too.  Having the nursing shifts provides for us to be able to work and sleep and things every family does - groceries, bills, sports, school, blah blah blah.  It is not a luxury and something I would not need if she was not sick.  Nothing would make me happier than to not NEED this.  That would mean Megan would be better!!!!!

Anyway - Friday sucked.  There was a BBQ cookout at James' high school Friday night before the football game.  Big family event.  Pat went up with James.  They worked the parking lot for the game and James' wrestling team painted themselves up and raised money for their team.  I was supposed to go with Ryan and Megan but that did not happen.  Megan needed nebulizers and respiratory cpt care and was having lots of seizures so she was not up for it. So we stayed home - I took care of Megan while Ryan sat on the couch alone watching TV.  Night nurse was scheduled for 9pm.  At 9:30 still noone here so I called and got the - oh - didnt anyone call you?  She can't come tonight.  When Pat got home with James around 10 I think I looked glazed - just like wth?  Friday night sucked too.

Now you know why I hated last week?  Meg is crying - have to go.......

Monday, September 19, 2011

Almost 5

In a little less than a month Megan will turn 5!  5???????  It is definitely a milestone.  One that seemed very distant and  scarily not reachable.  But here we are.  It seems unreal. 

She is getting so tall and looks like a little girl instead of a baby now - even though she is only weighing in at a whopping 25 pounds!!!  She has little girl braids and little girl expressions - I can imagine her running and playing and what a spitfire she would be.  Correction - spitfire that she is and how much more of one she would be if she were mobile. 

She had an overnite EEG last week to see what was going on with her seizures.  Fortunately there was not the infantile spasms pattern present - but seizures are still all over the brain and happening too frequently. 
Currently she is on clobozam, zonisamide, keppra and gabapentin.  There are only a couple that we have not tried to date.  A few because they are contraindicated for use in mitochondrial patients so our options are limited.  I think the ivig has been the most beneficial thing so far for her.  She really is much more aware of what is going on and interacting a lot more.  Still doing weekly sub q infusions and will continue for at least another 6 months.  Just have to wait and see - as patiently as I can.  My patience have grown immensely since Megan arrived.  I don't even recognize me anymore most of the time.  What is that saying:
I cant remember who I was back then...........that sums it up.