Where's Alexa part 2

I want to update just a bit.  Right now I'm finding it very difficult to write about whats going on with Alexa.  Writing has been very therapeutic for me, however sometimes it makes everything much more real.  I cant seem to gather my thoughts, and put them down on paper lately.  So I'm going to give a very brief update, and post a bunch of pictures.



Alexa in pain

Alexa has been on a very difficult road since her surgery in April.  She developed an abdominal infection, which we think was introduced to her during her surgery.  We have had many ups and downs with her since then.  To the point where we were thinking we were having to say our good byes.  Alexa was needing oxygen almost continually, and was in so much pain...  Pain...  She at times has cried continually through out the day and night.  The pain cry...  Seeing my baby shake from pain, being unable to move, and looking at me begging me to fix it.  I feel so helpless during these times.  It's not right that she be in that much pain.  Sometimes it all gets to be to much for me.  I find myself escaping when the nurses are here so I dont have to continually here my daughter cry and not be able to fix it. 

Kevin and I have started talking about the time we have left with her.  This is a very sad and hard thing to accept.  We've talked about how we need to make the time we have with her count.  Quality vs quantity.  I've come to realize that sometime in the past 2 years we started just making it by day to day.  Our focus was on getting through one bad day or period to just start all over again the next.  WE need to start living each moment like its our last.  So cliche I know, but very true. We have to stop focusing on all the things we cant change and start enjoying what we are given.  Which is two amazing beautiful little girls our gifts.  WE want to be able to look back on this time as time well spent.  If that means just cuddling with Alexa and reading her a story or visiting the pet store because she loves animals thats what we need to do.  No, we do not have a lot of money right now, and yes our lives have taking a drastic turn from where we were financially before to where we are now.  That stuff doesnt really matter.  I want to look back on this time with no regret.  I dont want to be feeling like I should of spent more time with her just being with her is enough sometimes.  I dont know if that all makes sense, but it has given us a fair amount of peace about things.

Now I'm not saying we ignore the other things going on in our lives.  Finances are important... I actually just got a part time job (I dont know when I start though), this should help.  Also there are times when I just need to cry.  I've come to accept that this is needed, and it's OK to cry.  I just cant be sad all the time.  Anyway thats all for now.  Just please pray for our sweet baby, and that the doctors can find a way to help control her pain a little better.  Here are a few pictures of our lives recently. 

Where's Alexa???

I might have to break this up into two parts.  I want to update about Alexa's Surgery but there has been so much else going on I'd like to update as well.  I guess we'll see how it goes, and how the thoughts decide to flow...

So if you've been following along I'm sure you know we've been preparing for Alexa's surgery and recovery.  This was not an invasive surgery so recovery time should be short...  Alexa had four different doctors working on her so although this wasnt a very invasive surgery it was a very long surgery.  The concern with her is because she has so many respiratory issues how would she respond and recover with the anasthesia.  I wasnt nervous about this procedure until the week prior when the anasthesiologist seemed all concerned. 

So Tuesday 5am rolls around its time to get up and out of the house.  Alexa has been getting pedialyte from her tube all night to keep her hydrated.  We have to stop this at 5 am.  Alexa is not very happy we decided to get her up so early.  First stop preop.  Here it seems like you're waiting forever just to get a bracelet and do insurance paperwork.  They had a nice set up with childlife specialists that played with Alexa and did some arts and crafts with her while we were waiting.  Ali was happy because they gave her stickers. 

Finally...  Time to go to our preop cubicle.  Alexa's was so upset at this point she knew something was going to happen that she wouldnt like.  This is where the patient is supposed to get undressed put the johnny on, get an IV and sign all the consents for surgery and anasthesia.  Well the only thing Alexa allowed us to do was sign the consents, and talk to the docs.  They gave her some meds through her gtube to calm her down.  Someone also gave her a balloon which also became pretty hillarius to Alexa in her loopy state.  Off to the OR I dressed in some blue scrubs and was able to bring Alexa to her OR room and hold her while they gassed her to put her to sleep.  This was around 9:30am. 

Kevin and I head off to the family waiting room.  There is a nurse liasion there that you check in with who will give you updates if needed and also takes your cell phone number so you can leave.  However she didnt think it was a good idea for us to leave because Alexa had so many procedures and we would be getting so many updates.  We just prepared for the long wait.  Until we got the first update both Kevin and I dont usually talk to much as the tension is high as to whether everything is going ok.  After that we are able to relax a bit more as the day goes on.  I remember looking at my toenails at one point and being mortified that my toenails werent painted and were OMG chipped!  For some reason that became all I could focus on.  I started worrying that everyone was looking at my toenails and thinking terrible things.  I ended up running to CVS and buying nail polish remover, hiding in the bathroom and taking all the paint off.  It seems silly I know, but I think it was my minds way of letting me focus on something else other than Alexa.  Guess what, it worked...

One by one the docs working on Alexa started coming out to give their updates.  After almost 4 hours we were finally taken straight up to the cardiac ICU to see Alexa.  Baby girl was recovering nicely.  She only had a couple of instances where her oxygen dropped, but was able to rebound nicely.  At one point Alexa started to spike a fever and I felt like the nurse wasnt really listening to me when I said that it would continue to spike unless we gave her something.  We had already given her tylenol.  She needed Ibuprofen, but it needed to be ordered.  It took nearly 4 hours to get her the ibuprofen by which time she was already very flushed and burning up.  The nurse never even took a temp...  Needless to say I was a bit frustrated.  I was putting cool cloths on her just to bring her temp down.  It finally broke in the middle of the night and she was drenched in sweat.  Yes I know she spikes fevers all the time.  I was nervous because a) she just had surgery and I didnt know how this would affect her autonomic system, and b.) if we dont medicate her right away her fevers tend to keep on rising being very difficult to bring back down.  Her little body was dealing with a lot of stress already. 

While we were inpatient I wanted the wound care nurse to take a look at Alexa's gtube site.  Its been pretty bad lately very red with broken skin, and painful.  It leaks all the time.  Well the wound care nurse looked at it and said GI nedded to come take a peak at it.  They came in and said it was too tight we needed to get the gtube changed ASAP and changed her dressing completely.  This delayed our discharge time and was going to make Kevin late for work, but it was worth it.  We made the gtube change for the following day. 

During this time Alexa seemed pretty good, she was definately fatigued, but didnt seem like she was in any real discomfort.  The following day we headed back to Boston to get her g-jtube switched out.  This seemed to push Ali over her patience tolerance.  She was so mad!

I wanted to write more, but unfortunately i dont have the words right now.  Alexa is having a very difficult time, she is in so much pain, and very unstable.  We are trying to enjoy the time we have with her.   Please keep her in your prayers