Your keyboard should have a mute button

There is something to be learned from the old saying "if you don't have anything nice to say, don't say anything at all".  I'm not saying that I always adhere to this little piece of advice that we have all gotten at one time or another but last night...I did hold my tongue (or my keyboard in this case).  On one hand, I am glad that I didn't continue to respond...and on another I am pissed at myself.  Because I held my "keyboard" I tossed and turned and fumed all night and have woken up fuming.

I love facebook and I love my blog but a few things have happened on there over the last week that have really gotten underneath my skin.

For one, I made a political reference about the occupy movement last week.  I don't normally comment about political issues.  My real father is a crazy political person who cannot let anyone have their own opinions or beliefs so I learned how to just nod and agree when people speak about politics.  So my political reference on my facebook page was commented on by a friend with a sarcastic joke which in turn set off another friend of mine and by the end, it was a full blown insult fest directed at me!  The friend of mine actually said I could look like an ass, I didn't do my research, I didn't know what I was talking about etc etc etc.  So I deleted the whole thing.  I don't like to be attacked.  I'm not good at holding my tongue and I can get very snarky and nasty when people come at me with insults.  

Last night, one of my facebook friends had some accusations slung at her about some t shirts that she has had made for herself and that she is now offering to all of our cri cu chat families at cost.  The accusations were really horrible and made references to her doing it for her "own personal game" and that she was in fact keeping profits and taking away from the 5 P minus society.  My friend making the t shirts has been asking all of us on facebook and in our support groups for our opinions about the shirts.  We voted on them and decided on colors.  It was an open conversation that included the price that it would cost to get them made.  There was even a post from my friend where she was super excited because she got a cheaper price then we all originally agreed to pay.  Anyways, I am sure that the person who was slamming her just had a crappy day (as we all have on this road).  I am sure that the mute button on her keyboard was temporarily broken.  

The reality is though that I have too much going on in my life to be slammed by people on cyber space. I go onto facebook and blog because the people who read my blogs are supportive.  Because they have become my friends.  My cri du chat friends have become my family.  And families all have bad days.  There is always a sister or a cousin or an aunt or someone in the family who heads off the keyboard deep end.  

I am just hopeful that they can realize that sometimes it is just best to say nothing.  If you don't have anything nice to type, don't type anything at all....

Thankful for Tubie

Hailey has been out of the hospital for a little over a week now and oh what a week it has been.

I really wanted to hate the g tube and I do for the most part.  I mean, I hate that she can't eat cake and candy.  I hate that she can't have salad or bread.  I worry about how she is going to do on Thanksgiving tomorrow with all of that food around and how she is going to do at her cousin's birthday party this weekend.  How am I supposed to explain to her that she can't have any cake after the Happy Birthday song?

But here is the flip side.  We have been dealing with Hailey's pretty severe behaviors since she was about 3 or 4...some of the behaviors began even before that.  The head banging, the rocking, the sensory seeking behaviors, the self injurious behaviors and then the aggressive behaviors.  We have had her on a few different types of medications over the last few years and she has been in behavioral therapy for as long as I can remember.  I expected those behaviors to continue when we got home from the hospital...but they haven't. 

Some of them have remained of course.  The rocking and the sensory behaviors are still there.  She still pulls her sister's hair occasionally to see what reaction she will get and she throws things and gets frustrated.  But for the most part, they are dull in comparison.  And right now she isn't on any behavioral medications at all.

It is actually quite amazing.  I love it.  I don't know how long it is going to last or if it I am going to regret typing this out (you know the old spoke too soon analogy) but I'll take it for what it is for now.

The sad part of all of this is.  I have been thinking that maybe her behavioral stuff has been more medical for the last 7 years then any of us realized.  I mean maybe she was refluxing and aspirating so badly that it was creating a need to have the behaviors.  Maybe she has been silently choking on her food and that was her way of trying to tell us.  I look back and see all of her flapping at dinner, the vomiting when she would swim, the grabbing and hitting...Maybe she was hurting.  That makes me sad.  It makes me sad that we were trying this whole time to modify her behavior and here it was something else causing them...and that she was most likely in pain.

So although I do place some blame for the tube on the ENT who did her botox treatment, in the back of my heart, I am also thankful that she developed this swallowing problem.  Without the swallowing problems, without the tube, without the botox we would still be feeding her lactose which obviously doesn't agree with her...we would still be trying to modify her behaviors that were most likely caused by reflux and aspiration.  

So this year for Thanksgiving, I am going to be giving a small and quiet thank you to Hailey's new and shiny g tube which we are affectionately calling "Tubie".

My Challenging Little Mystery

Hailey had her g tube placed last week.  It was supposed to be a 3 to 5 day stay in the hospital and we were all prepared for it.  I wrote all of the emergency information out for my hubby who was holding down the fort at home.  I did all of the research.  Most of it said that it was a fairly simple surgery and had a quick recovery.  Even in preop, the nurses were asking us if we were going home right afterwards.  So I was pretty confident that this thing was going to go smoothly.  So much so that the surgeon was actually leaving for vacation that next day and I was fine with that.  Of course she had partners on call if there were any complications but she assured us that wouldn't be necessary.

Well if you haven't met my daughter, you wouldn't know that Hailey likes to do things big.  As one of the doctors in the hospital told us on day 5...This is the Hailey show, we are just living in it.  She likes to make the rules and she makes sure that we are all playing by them.

She slept from 7 am Friday morning until 6 am Saturday morning waking up only to violently vomit :-(

So of course, there were complications.  First of all, she was in a significant amount of pain.  When we went back into the recovery room, she was already shocking the nurses with her super human strength and one of the nurses was having to lay on her while the other nurse gave her the morphine.  The pain that was suppose to begin to subside over a period of 12 hours or so was still very present at hour 24.  She was still receiving morphine every 2 hours at hour 36 and they had to add an iv form of ibuprofen.  She would sleep for an hour while the morphine was on board and then wake up in a shocking amount of pain.  In the meantime, we had to begin to slowly feed her.  So ounce by ounce, hour by hour we began the feeds...which she promptly began to vomit up.  They finally stopped the morphine and changed the medication and added a tylenol with codeine to the ibuprofen.  But the feeds would not stay down.  By day 4 in the hospital, she spiked a major fever even with all of the fever reducers on board and would not stop vomiting, even with the anti nausea medication on board...they were talking about meningitis.  They got a chest xray and a belly xray.  We had spoken to the dietitian several times because they didn't have her PediaSure Peptide 1.5 in the hospital so he had put her on a different formula which he said was "the exact same formula just under a different name".  We asked him so many times because of course Hailey is super sensitive.  Her temp broke on Saturday early morning and she was on tons of antibiotics for an ear infection.  She still couldn't keep those feeds down though.  By Sunday morning we were beyond frustrated.  Slow feedings weren't even working so they brought in another doctor and another surgeon to try and figure things out.  

Her sister was so worried about her and she copied the pain chart for her so she would understand it better.

That is when I met my favorite doctor.  On Sunday morning...Day 6.  He sat down on the side of Hailey's bed with me and went over the whole thing.  He said that he didn't know Hailey so he was counting on me to insert my opinion and say whether or not I agreed with his plan.  So first things first, we brought in her formula from home (and low and behold it had 6 grams less of protein than the stuff they were trying to give her in the hospital).  We then added prevacid and reglan.  We then started with 100 ml feeds (1/2 of the normal amount) and started building things up slowly but surely.  He ordered an upper GI after the meds were on board for 24 hours to make sure the reflux was controlled and that her tummy was emptying...And low and behold...It worked!  (well not right away but in about 24 hours!)

Finally she was feeling a little better and got some color back into her cheeks

Finally by Monday she was holding down most of her feeds...even through the hospital switching her room (which was another issue...she has trouble with change anyways so this was a BIG deal!)  She threw up one but then we started again and by 10 am on Tuesday morning we did the last feeding and we were ready to blow that place!  By 11:40, her pump was delivered (we had been feeding her by syringe since September 16) and by noon we were in the car.

If we waited for someone to help us with all of our stuff, we would have been in the hospital room for at least another half hour...No way!  I packed it all up on her wheelchair and we escaped!  She thought it was hysterical!

She is so resilient.  The thing is that once we got in the car, she was dancing to the music and laughing and talking again.  She was so excited to go home.  It was such a long 7 nights and 8 days.  Exhausting for both of us.  Once we got home, we half expected her to be tired...but nope.  She was full of energy.  Running about, playing with her sister.  

She has lost 10 pounds and we are going to be slowly and steadily building that weight back up.  We can't go too fast because we don't want to upset the delicate feeding balance that we have going right now. 

All I can say is that I really appreciate all of the doctors and nurses that worked with us over the 8 day stay.  She can be challenging and she is definitely a mystery in a lot of ways.  I appreciate the fact that they trusted me to give them her history and to speak for her.  I appreciate the fact that when she wasn't doing well, they had different doctors come in to weigh in with their expert opinion.  I appreciate the fact that the nurses were so supportive and helpful and helped me to keep her comfortable.  I appreciate the fact that even when the doctors and the nutritionist were wrong, that they didn't give up, they just came up with a new plan.  

I also really appreciate the fact that I am not jaded.  People make mistakes, experts make mistakes, and doctors make mistakes. They are just working with the information that they have and it isn't their fault that Hailey's body doesn't follow the rules.  I trust the doctors and the nurses.  They have knowledge that I don't have.  I need them to help me to help her.  I trust the therapists, especially her behaviorist who came to the hospital on the first post of day (day 2) to help me to calm her.  Without the therapists, I wouldn't have the knowledge that I do have about sensory input and many other things that help her get through her day.  I trust the dietitian (even though on this one, he screwed up big).  I need him to help me with her calorie intake and with her prescriptions and with advice.  I have to trust the experts and I do.  I am so glad that over the ten years and ten months that I have been a "special needs mom" that I haven't lost my trust in those people that I need.  

For almost eleven years, Hailey and I have been in this together.  It is exhausting but it also refreshing to see how resilient and how strong she is.  I get my strength from her.

My Morning

Every other weekend, Hailey goes to her dads house for a few days.  I get all excited for some respite time and in all of that excitement I tend to over plan my few days.  I generally do all of the laundry, make the grocery list, clean the house, wash the car, straighten up the garage, clean out the cabinets and drawers, wash all of the light switches on Friday...Aubrey gets to have a nice long bath and we read stories and play.  Then I have date night and visit with my friends and go out with adults and generally pack in as much fun as I can possibly take...Oh and we try and go out to eat as much as we can since we don't go out to restaurants with Hailey since she had the tube placed.  I PACK IN THE FUN and THE RELAXATION and THE CHORES!  

So I specifically planned this morning to lay around and maybe sleep in.  But nope.  I can't.  I am so used to getting up at 5:30 that I had to force myself to stay asleep until 6:30.  Then I watched the news, got up and started the laundry, unloaded the dishwasher, made my coffee, read a little bit, swept the kitchen, went back to bed and watched the news again...I cleaned the bathrooms and straightened the laundry room.  I vacuumed the couch and the living room.  

I really want Aubrey to wake up so we can play and start our day.  I am thinking a nice long bubble bath for her while I read...then going to the library and picking up some new books and then to the park.  But she is still sleeping!!  

It is only 8:30 in the morning.  I always forget how slowly time goes when Hailey is at her dads...how many things that I can accomplish in an hour.  How it doesn't take me all day to do things.  

But oh dear!  What a miserable existence it would be without her.  I am happy to have my few days of respite but I miss her so much.  In less than 24 hours, I have had all of the respite that I need to refuel myself.