Dream vs. reality part 2

Walking at our waterfall

If you got through my previous post without falling asleep I applaud you.  lol

The past couple of weeks have been very eventful it seems.  Almost everyday there has been something. From my aunts lovely dinner and ice cream sundays to Kaylie waking us up in the middle night with a sky high fever.  I've spent a good amount of time trying to get the medical supply companies all set up.  We have a lot of the transfer complete just working on some minor and then some major things like her feeding pump and some particular supplies.  Hopfully we can get that all smoothed. out. 

Friday my parents watched the kids so we could go out and went to a get together with my cousins.  Can I just say that this was the most fun we have had in a really long time.  We felt normal for a night, and yes I got a bit tipsy... maybe laughed a little to loud at someones jokes and ate mcdonalds at 2am but it was nice to have a break from all the responsibilities of the world.  I liked being able to let go a little.  If you had asked me that the next morning when I felt like death I may have given you a different answer.   Especially seeing as the rest of the world wanted me to wake up and all I wanted to do was bury deeper under my blankets.  But it was worth it.  Thank you Becky and the rest of my cousins who were there and Auntie Laurie for a great time, I needed that. 

Saturday my parents, us, my grandparents, Matt, Mary, Ella, Katy and Kira went out to eat for my birthday.  It was so nice to get together.  However Alexa was not having it.  She was miserable, so miserable that Kevin ended up leaving and taking her home without even eating his dinner.  We found out later that she was terribly constipated, and having a ton of pain.  Poor baby.  The food was excellent the service eh... not so much.  However it was quite embarrassing when the dj guy took the mic wished me  happy birthday and had the entire (yes entire) restaurant sing happy birthday to me.  Everyone turned in their chairs and sang.  I was so embarassed!  but I can laugh about it now. 

Sunday should have been uneventful.  Our only plans were to grocery shop watch the football game, and for me to finish organizing all my records for the trial.  I had to reread all the documents DCF had on me and got very depressed.  I felt like the whole thing was so hopeless.  Kevin decided to give me a break and do the groceries with the kiddos so I could have some time alone.  About 20 minutes later Kevin frantically comes into the house holding Alexa.  He accidentally pulled her GJtube out.  It got stuck in the grocery cart, and Kevin felt so terrible.  This has only happened one other time when I got it stuck in Alexa's carseat.  Needless to say this meant a trip to the hospital.  After speaking to the GI doc on call they told us to just go to Boston.  I was feeling so depressed about everything I dont think I could handle a trip to the hospital.  Feeling like people were looking at me like I pulled out her tube on purpose.  Not saying thats what would have happened but thats how it feels, when your suspected of something.  Kevin decided to take her in to help me out.  This is the first time I havent been with her when she was in the hospital.  I felt awful,, I should have just gone.  They ended up staying the night so she could get IV fluid, and they put a new tube in first thing the next morning.  GJtubes have to be placed under interventional radiology.

Kaylie was so upset by this entire thing.  She was at the grocery store with Kevin when this happened  and she absolutely hates blood.  Of course when a big ballon gets squeezed through a tiny hole in your stomach there will be pain and there will be blood.  Kaylie was crying saying I wish my baby sister wasnt sick.  I pray to God everyday that she doesnt have to be sick, but she still is.  Then she was crying because she couldnt go to the hospital and she thought Alexa would be afraid without us. 

Turns out she was right.  Alexa is not used to being away from me ever, and especially not when she's in the hospital.  I have only ever left her for about a half hour when she's inpatient.  Poor baby didnt go to sleep till almost 1am.  Everytime I would call I would here in the background this pathetic momma whimper.  It made me so sad.  Never again, I have to be there for her no matter what.

Alexa at the hospital with her lovie

Alexa has a green blanket that is her absolute lovie.  She has loved that thing completely since she was very young.  Anyway she usually just needs it during naps or when she sleeps.  If she is having a bad day I'll give it to her for some added comfort, but it's not something she has to have.  Up until this hospital stay.  Now she has to have it touching her at ALL times. 

She's been a lot more fatigued lately.  I guess thats to be expected though as she's been very busy.  (may be TMI for those who get grossed out easily)For the past 3 weeks Alexa has been getting very constipated.  For Alexa this is strange as she normally has loose stools.  She was so constipated the other day I thought she was having a seizure briefly because her entire body was shaking.  I actually got up to run and get her medication.  Then realized what was happened.  She screams in pain and it sometimes can take hours to get a little pellet out.  This is bad news for Alexa as she has dysmotility and this could cause a blockage of some sort.  So she is going to start taking a stool softener on top of her metamucil.  I just hate seeing her in pain and there is nothing else I can do about it.

Also today she was very uncoordinated with her movements.  She couldnt even stand up.  It scared me.  I thought well maybe it's her shoes and they're hurting her feet.  So I took them off but there was no change.  She couldnt place one foot in front of the other even with me holding her hands.  So we rested and about an hour later she seemed much better.  Still fatigued but at least able to support herself.

We went to Boston yesterday to meet with a cardiologist who specializes in autonomic disorders.  Unfortnately he gave us news that we really did not want to hear.  That she has something wrong with her central nervous system.  That she has an autonomic disorder, but pinpointing a specific diagnosis may take years if at all.  As there are so many unkowns with this field.  So even if they did figure out a gene that may be causing some of her issues she may be only one of a handful or the only one who presents the way she does.  What does this mean for Alexa?  He said that right now we need to be providing her comfort.  So we're going to treat her symptoms.  There is no treatment or cure to "fix" her. However he doesnt feel right starting her on a beta blocker or another medication just yet because the side effects may be more uncomfortable than the symptoms right now.  I asked what this would mean for her prognosis, and he said that although he can not predict the future.  We can assume that she'll have periods of stasis and periods of rapid decline where the symptoms get worse.  In times where she appears to be declining fast we need to be prepared for anything.  The best thing we can do right now is to try to keep her healthy.  He explained it to me like this.  There are 3 types of cars the ferrari's the midgrade car and the jalopy.  Alexa is a jalopy (yes he just compared my kid to an old beat up car)anyway if you keep the jalopy tuned up to the best of it's running ability  you can have that car for a few good years.  He said it doent matter if its a ferrari or jelapy if you dont do tune ups and it break it still breaks.  I thnk he was just telling me to try to keep her body as healthy as I possibly can.  That illness and dehydration can really cause her a major setback and in her case may be life threatening.  As far as the fevers her sweating and heartrate we should try to treat the fevers with what we have and if the heart rate becomes more of an issue we'll address that as well.  He said that he will be discussing things with the major players in Alexa's care, and we'll go from there. 

What do I take from all this?  It's very distresing news but I have been preparing for it since August when we had that major setback.  I see the little bit of decline in her.  Just a bit more fatigued, sleeping more attempting to eat less and her eyes.  The sicker she is the droopier they get.  It seems now we cant go out in public without someone exclaiming about how tired my kid is.  I just nod and smile, but part of me cringes inside, because if a stranger can see it, it's not just me being overdramatic...

Alexa wearing daddy's shoes

Today was another very busy day.  I had Kira and had to take the 3 girls to Childrens so Alexa could have a hearing test and her ENT could check out how her perforated eardrum was doing.  She absolutely failed the hearing test doing much worst than she has ever done before.  However she has developed another ear infection in her left ear and this may be causing more hearing issues.   So the decision has been made to put tubes in her ears.  While she's under he will snip her attatched frenulum.  He said something that made me a bit nervous.  He said that if Alexa hasnt started developing speech yet there is a good chance she doesnt.  For some reason I was under the impression that we still had time...  Hopefully we can get her hearing at her best, so this can e avoided.  After her tubes are place we wait 6 weeks and have her tested again.  I was really hoping that while she was under we could do ABR testing but apparently once they get tubes placed it can mess with the results. 

My SIL Maryanne was able to calm me down about the speech issue.  She's a speech therapist and has seen kids who can only say one word start to speak in sentences.  I would love to hear Alexa talk.