Saturday, August 13, 2011

Old fears, new fears... New hope

So much has happened since I was last able to write.  I'll start at where I left off, and try to catch up with everything.  However I do want to mention quickly for those of you have left comments or emailed me saying you tried to leave a comment but couldnt...  I am not very good with this IT stuff, and cant figure out how to make leaving comments easier.  I havent been able to respond to them lately either, and its my own blog!  So please dont think I'm ignoring you.  I appreciate all the words of encouragement I have recieved, it really means a lot to me. 

Last week I left off feeling really grim, and questioning whether Alexa had a seizure.  The following day we were on our way to Childrens to get Alexa's dreadful tube changed, when I got a call back from her neuromuscular doc.  Who insisted we take her into the ER immediately and to skip the appointment.  Fortunately the ER staff made it possible for us to go to her appointment so we wouldnt miss it.  (So hard to get last minute).  Alexa was less than pleased.  After a complete day wasted in the ER we were sent home with a diastat kit for more seizures.  Alexa and Kaylie were both exhausted and we didnt get home till almost 10pm, no fun!  The docs would have liked us to stay so they could monitor her...  ummm...  I can do that.  Anyway we had a follow up with Alexa's neuromuscular doc that coming Monday.

I have to say that around this time Alexa started taking a turn for the worse.  Her fevers kept spiking to unbelievable highs, with no reason, and sometimes the meds wouldnt even bring them down.  She started getting soo weak.  Not being able to stand at all and just laying there.  She would just limply point her little finger to what she wanted.  Either me or her bean bag chair, and limply laid there.  At this point we thought we were losing her.  It felt as though she were just fading away in front of me, her little spark of life gone.  What can we do to make her better?  We dont even completely understand whats wrong.  How can I make her more comfortable?  How do we say goodbye?  I dont want this, I want her to continue being the miracle she is.  I need her to show me through her own fight how great life really is. 

On Saturday we got some great news.  A spot in the dream day camp had become available, yay!  We just had to pack up and leave the next day.  Now that was stressful!  You may be thinking why would we add this when things seem so uncertain with Alexa.  The only thing I can say is that the entire family needed this, and that we would do the same for Alexa there that we were doing at home.   We just needed to be doing something, and if at anytime she seemed to be doing worse we were ready to take her home or to the hospital. 

I would love to say that we got to the camp and everything was instantly better.  However thats not how this story goes.  We got to the camp on Sunday evening, Alexa had a temp of 103.5 and the tylenol and IBuprofin were not touching it.  After a long night I left for Boston Children's early Monday morning (5am, didnt get there till 9am), where Alexa had an EEG.  Which showed that yes it did appear she had a seizure.  We didnt have Ali's appointment till late afternoon so I spent the day walking the streets of Boston.  Literally everytime I stopped she would start getting fussy again. This is so embarassing but I got so lost I had to call Kevin to help me find my way back.  Then I got the bright idea to go shopping in Best buy and I got a great deal on a printer that we so desperately need for $20.  Umm... great idea Amy,  now I just had to find a way to get the thing back to our car over a mile away.  So off I go with a big old box on top of the stroller.  I couldnt even see in front of me.  What a picture that mustve made.  Did I mention that it started to downpour halfway back...  Anyway after that I decided to keep my wondering to inside the hospital.  Alexa was so off, I barely heard a peep, and she couldnt even lift her head. 

She spiked another fever just before we were to be seen and I had already dosed her with her meds.  She lost weight since the Thursday before, and she just looked awful.  I remember looking at her doc at one point and begging him to tell me what to do.  He didnt have an answer other than we will keep on looking.  I tearfully told him that I felt like we were losing her, and he wasnt able to reassure me like I so desperately wanted him to do.  He said that he was so sad to see her so out of it, last time she seemed so perky.  It just seemed like all the fight just left her.    We decided not to start Alexa on any antiseizure meds as it would most likely tire her out.  Our hope is that this was a one time thing.  If it happnes again we have her diastat kit, and the understanding that she will have to start meds.  He also didnt think Alexa was stable enough to be at the camp. 

What could I do, I still had to pick Kaylie and Kevin up.  So we decided to take it hour by hour.  If at anytime we needed to leave we would.  We stayed at the camp all week, and although Alexa continues to spike these fevers, and have apnea at night.  We slowly started seeing a little more life in her.  Yesterday she had her best day in a really long time. 

The camp is soo laid back, but perfect for us families that are constantly dealing with doctors appoinment, paperwork, insurance, medical supplies, early interventions, ect.  They have tons of activities that are planned, if you're up for it great, if not thats ok too.  This was perfect for us, because I would send Kaylie and Kevin off to an activity while Alexa slept, and I was able to get some peaceful reading in.  I havent been able to read in so long.  (Thanks Heather for the books you're letting me borrow, I finally finished one and just started a new one).   Kaylie made a great friend, Kevin loved the fishing and turtle catching, we all made tye dyed tank tops and became the tye dye family (so corny, I know).  My favorite part was the beach it was gorgeous.  Alexa had the best time at the play/musical we went to yesterday.  She was even dancing in the aisles!  You have to understand this is the most movement we've seen in a long time, and she was so happy.  I was starting to think we wouldnt see her smile ever again.  After a nice nap she was able to go to the beach play in the sand and look for crabs in the water.  She even tried some ice cream afterwards (first thing she put in her mouth in over a week).  We all so desperately needed the joy this day was able to bring us.  We have our Alexa back.  Yes she is weaker and is doing worse in so many ways, but we got her smile back, and hopefully her will to keep fighting. 

This week came at the perfect time.  We all so needed to be together and able to relax and have fun.  Alexa was able to dig in and find the energy to fight a little longer.  Along with all our old fears rose new hope that things might improve.

Thursday, August 4, 2011

While you were sleeping...

I've been finding myself lately reverting back to my stalkerish days at the beginning of Alexa's life where I would just watch her sleep for hours.  Thinking she was the most exciting amazing little thing, I'd ever seen.  Not that the feelings have changed over the past 20 months it's just that things have become a little more routine.  Lately though I'm bck to breathing in every single second of her life.  I dont want to miss anything and want to treasure every moment we have with her.  I feel like the horrible past couple of weeks have opened my eyes to the fragility of her life.  I need to start preparing myself for the worse case scenario.  I know that sounds morbid, but I've been so scared since this past weekend.  I cant seem to rid my brain of the look in her eyes, when I realized she was just giving up.  It was like she just wanted it all to end, because she was so tired of fighting, and I wouldnt let her.  I look at her in her good moments and see how full of life she is, and its so decieving because it gives me that false sense of security that everything is going to be alright.  It's not...  There will be a time when I cant revive her or make her breathe.  It's not a question of if but when.  How do you prepare yourself for that?  How can I make myself accept this?  I dont want to ever have to accept this, it feels so unfair. 

We think Alexa may have had a seizure today, but arent sure.  It doesnt really make sense though because she has never had a seizure that we know of in the past.  She just lost all control of her body, and was completely unresponsive and her eyes were twitching back and forth with no focus.  Kevin who is usually so calm was panicked, and I just reacted like this was a normal every day occurance, but am very shaken now.  I keep replaying it in my mind.  Shes also had quite a few apneic episodes, and is still requiring more frequent suctioning. 

We go tomorrow to get her GJtube changed which is so traumatic for her.  Imagine being a tiny person in a world of giants, brought into a strange room with huge equipment and tons of giants in gowns and masks.  Getting strapped to this huge  table underneath this scary machine, and held down by 3 of those masked faces while they poke and prod at your already tender belly.  She probably thinks she's their next meal.  I know I would.

I was going to take the girls to the aquarium tomorrow because we're studying ocean life this week.  Alexa just wont be able to physically manage it.  She just gets so exhausted so easily these days, and we have to reserve all her energy for her nights.  I just hate that I have to disappoint Kaylie again.  I usually try not to tell her until the day of as we so frequently have to cancel plans.  But ALexa's hearing therapist was here today and I mentioned it to her, Kaylie overheard getting soooo excited.  We'll have to plan it for another time, I just dread taking Kaylie out to Boston for a long day at Childrens with that disappointment hanging over her head.  She's a good girl, but she has had to take so much disappoinmtent in her young life. 

I wrote most of this last night in the midst of her apnea spells.  With the morning light comes new perspective, and although we do feel that things have worsened it doesnt necessarily mean we will ever stop fighting and I need to keep the mindset that we will NOT lose her.  After reading back over some of my recent posts I realize that I've been sounding so negative.  I think that negative thought process  impacts greatly the way I'm feeling lately, and I need to stop worrying so much.   Alexa is still here and she is still fighting, she just had a weak moment.