Tuesday, August 21, 2012

another pre-surgery day....

Well, it's my birthday.  I am 39 today.  For probably the first time ever, it truly requires no attention.  Of course, I've said that in years past and would probably have been sad had I got no cake or acknowledgement but today, I just will be waiting for our guests (they stayed in hotel instead of coming last nigh partly because their youngest wasn't well though it sounds like he just indulged at the treat table at a wedding a bit more than needed) ...and we'll be waiting for the call from Primary's to let us know when Connor's surgery time will be tomorrow.  .........I did get up to beautiful flowers and one of the best cards ever from Mikey.  ........I got up early because Connor has been up pretty much ever hour to two hours.  It was time to just get up and throw him in our bed.  I can sleep there too but it's not very comfortable because he's got equipment to bring along.  Can be done, has been done, but better for all for me to just get up.  ......I'm a bit worried his reflux is just getting worse.  It's something I'll need to discuss with his pediatrician or possibly try to get input from GI while we're in the hospital even though the GI department technically are not part of his team this time.  We've been paying attention and even during the day it seems he has more and more of his 'episodes'.  ........since he is on a continuous feed at night, it just has me wondering if a constantly full belly means even more acids in the stomach.  ........who, tomorrow's surgery will be a game changer.  The G tube will either make everything better or it'll make things worse.  It is time to find out and we can only pray he'll be in the better category.   ..........I ended up getting a call from Dr. Siddiqi (plastics) yesterday.  We (his medical team and I) decided to NOT do the tongue tie surgery.  It will get done when his cleft palate is permanently repaired but with him getting the screwed in palate tomorrow, that is enough trauma in his mouth for one day and we do not believe the tongue being cut is going to be a significant change when it comes to swallowing.  The prosthesis will hopefully make a huge change in this area.  It'll also hopefully change the gunkiness he's always having due to so much mucus.  Simply having the NG tube out of his nose should help this too.
............I ended up joining a group on facebook specific to kids with special needs in Utah.  I may be meeting one of the mom's from that group tomorrow.  I hope I do.  It will be so nice to meet someone who's dealt with the kind of things we've been going through.   ...........I also joined another group that is nationwide and specific to kids with tube feeding issues.  This group is pretty cool because I can just go through prior discussions as well as ask any question and almost instantly have an answer from someone who's dealt with the same issue.  .........I love technology.  Seriously, we can  say this isn't easy but 10 years ago it would have been a much lonelier road.
....I keep hearing the G tube is easier but I sure am nervous about this thing.  It's been a huge mental hurtle.  To know we're placing something directly in Connor's stomach just feels wrong.  It feels like we're violating him somehow.  He'll have another scar, another appendage, me, it feels wrong even though we've had enough discussions and researched enough to realize it is the route he needs now.  ........I'm wondering what my reaction will be when I first see it.  I have looked up images and videos on caring for it.  It is truly foreign looking even though it essentially acts the same as an esophagus.  ........His going public will be easier in that he won't have something continuously stuck to his face (as in the ng tube).  He'll also finally be able to have a tape free face and that will probably feel so good.  He won't have something irritating his nose. ............we're doing the right thing so I really don't need to convince myself.  I just hate the unknown.  Is this going to show that his reflux is even worse or will it be the answer to simply giving extra nutrition until he can handle eating and drinking all on his own.  Time will tell.
.........I'll surely make posts to facebook to give the immediate details and at some point will post a few pics.  I won't post the g tube pic on facebook so will warn that I will post it on this blog.  Some may not be able to stomach the initial look of it and really, it's a little too in your face to post on facebook.  .........however, this blog isn't just for friends and family but also for those googling to see that they're not alone in this crazy journey  .........wish us luck to get through tomorrow.......pray for Connor to heal quickly tomorrow and each day.......and a little prayer thrown in for my boys and our family coming to visit today.
.........I also should quickly add a thanks for thinking of us while we continuously deal with our emotions lately.  Not only for Connor and the everyday family things but for knowing that Ireland has been especially close in our hearts lately.  ....I'm not going to lie.  Sunday morning was a hard morning.  She would have been 3 and I truly had a moment where I was extremely upset and just felt the world was not very fair to my family.  That moment lasted most of the day really.  ....ya try to swallow your tears but some days it's just hard.  Sunday was one of those days but I know people were praying for us, thinking of us and wishing things were easier.  I appreciate that.  It helps more than you know.'m such a horrible blogger...write too much but anyway....wanted to say today should be fun.  I am truly excited to see my family.  My husband's cousin, his wife and three kids will be here. sucks we won't be here the entire time but Sawyer will get to play each day with the kids and I will have additional support here.  We will make the best of this time.  ...........also, despite Connor's being up so much at night, he's definitely having his rough times during the day but he's also learning to want to play some.  He loves things that light up.  We're starting to think this has alot to do with his hearing but who cares, he loves the different stuffed animals with light up hearts and faces.  He also has a small, hand held type toy with a mirror that he loves.  ....Sawyer is hilarious and it's hard for us to keep up with him sometimes.  He's really into cars, plain ole' finding something to push while he runs everywhere, he's an avid hoser-downer (gardener of anything he can spray with a hose) and loves singing the itsy-bitsy spider (no words that make sense but he's got some moves!).  ...Tristan is seeking a J-O-B.  Harder than we would have thought.  Hopefully, something will turn up soon.  Also, gotta say, my man child is growing up.  He's been so much help since he's been home.  He doesn't seem as 'mouthy' and is truly helping around here.  He's sans girlfriend (and we're so glad, she made me feel I was ready to turn into a teen at times) and realizes (hopefully) that he's better without said girlfriend.  ........he actually put Sawyer to bed last night.  Have no idea if he knows how incredibly helpful that was.  I actually sat my butt in a bathtub last night because there was time for it.   Sooooooo nice. for the hubby, Mikey, I married well.  Yes, he can be a pain in the butt like all men have simply been made but he is a goooooood husband and father.  I have a best friend in him like no other.  ...he actually changes diapers, mops floors, does laundry, fixes formula and tends to Connor every night when he comes home from work.  Yes, in true man fashion sometimes he seems to think he should have an award when he does these things but more times than I can count, he just does these things because it is who he is.    I am lucky and so are my kiddos. today, my birthday, I'm happy.  I've already got a nice amount of well wishes from friends and family.  I've got family on the way.  I have some gorgeous flowers on my kitchen table.  I have a family that exceeded my dreams.  Friends that are amazing (and Lori, wanted to give you a shout ya!).  ....things are good.  Could be better but hell, everyone has something going on.

Hilarious moment from Sawyer.  He has started doing this when Connor is fussy.  We do not do this, he just manages to do random acts of silliness and God, I'm thankful.  We get to laugh every single day because of this amazing little guy!!!

xoxo......This one is coming into his own.  He's going to be soooooo happy when this tube is off his face.  Just last night he pulled it out to let me know he's sick of it.....every single day this one smiles and melts our hearts.  ...he has a commanding presence that sucks you in to just dropping everything and providing him complete attention.

1 comment:

  1. My dear, beautiful sister! You are so amazing!!! I woke up this morning around 3 with thoughts of you, my nephews, and as always my beautiful niece! I really have NO clue how you manage to juggle all that you do and still be who you are!! The worl is certainly a better place because of you and your amazing pack of boys! I wish I could be there with you today... You know that if you need me I can be there, will be there! Kisses to you all from us all! Xoxoxoxo