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Thursday, August 2, 2012

Maybe some DABDA....maybe not

Well, it's been awhile.  We've been busy and I've frankly been tired.   ...........anywho, this week started Monday morning with me having to make a ton of phone calls.  I think I was in a sense of denial that Connor was doing so great and well, honestly...for once, I am stumped.   ......I don't know if I wrote it here before or not, but I read somewhere that when your child is born with a special need that we go through the same grieving process as someone who's lost a child.  Well, we are familiar with the entire DABDA (depression, anger, bargaining, denial and then finally, acceptance) process.  We got a ton of information on that after Ireland passed away.   ........I wasn't sure if this was true or not with Connor because I wasn't depressed at first.  Or, maybe I was.  I do remember screaming and crying the first night he was born.  I recall being sleepless but remember mostly, just wanting to know what was wrong and how do we fix it.  Ok, maybe that was my anger.  Bargaining?  I'm not sure about that one at all.  I don't recall screaming to God and asking if I could take his place.  I don't know if because we'd already dealt with another baby, another illness that I already knew that a scenario like that sure wasn't going to happen.  I think I just knew that we needed to know what he had and to find the answers to deal with it.  .....so, to me anyway, I skipped the whole bargaining step and went straight to a sort of denial last week.  Then again, maybe I was just being lazy.  A sigh of relief maybe.  I just know we had an easy week.  I had to see the pediatrician and it felt nice to have a sort of break from doctors and all their opinions and the seemingly endless amount of frustration of their extremely differing ideas on what was best, what is good for Connor, what isn't so great of an idea.  ....It was nice to sit with my boys and call Tristan.  We ordered pizza, watched a movie, had baths, threw blocks, threw tantrums....felt somewhat normal.   .....then at some point, I got a call from the speech therapist and she asked if she could see me at 5pm on such and such day...nope, Mikey's working...Connor's good....he's slated for the g-tube anyway, we'll see you after that.  Then I missed the call from the GI department that said Connor indeed needed an upper GI (xray to see that his esophagus, tummy and intestines look good).....that's when I realized I better wake up.  I still needed follow up appointments with plastics to make sure he was healing well from getting the distractors out, I needed to get a hearing test for Connor and a follow up with his ear tubes, I needed to set up times for early intervention to come out and start working with him, and I still needed to set up a time for our G-tube class....oh, denial.   ...or laziness.  or just needing a break.  Who knows?!   .....anyway, I did all these things finally on Monday morning.  The week looked crazy on the appointment book.  I had to immediately go to Primary's Monday afternoon for his upper GI.  That took quite awhile because there was no paperwork that he needed it.  And of course, Connor decided to pull his tube out earlier so the tech had me wait for the doctor.  Luckily, my doctor was a no nonsense kind of guy and he said for me to go ahead and place it so we wouldn't have to wait around for paperwork saying that it was ok for him to place it....oh, how we must cover the doctor's assets with a paperwork and charge for every little thing.  Bless this doc for having common sense and hope it doesn't screw him down the road.  ....well, the upper GI showed significant reflux after just 2 ounces of formula in Connor's stomach but the anatomy was all where it should be.  After a small discussion, we decided that it's possible the GI doctors will possibly try to push a surgery on us that twists the top of Connor's stomach to prevent him from refluxing.  We (the radiologists and I) agreed that surgeons will push surgery and that the speech therapists would try everything else before ever suggesting this sort of surgery.  Mikey and I agree that we will continue working with speech therapy before we'll consider a surgery of this magnitude.  There are a lot of complications that can happen with twisting anatomy and frankly, it'll be a last resort before we go there.  We've already had the discussion before with our pediatrician and anticipate having the discussion again with others.   ....well, Tuesday morning was time to see plastics.  Dr. Siddiqui believes Connor looks great and we'll just be using some vitamin E oil to work on healing Connor's scars further.  To date, his scarring is minimal and his big cheeks cover everything.  In time, they will fade.  And his actual jaw looks wonderful and his airway is very much open.   We did discuss the need of a prosthesis for Connor's cleft palate.  Because he has so many feeding issues and issues with horrible amounts of secretions (mucus), we figure a prosthesis can only help Connor.  So, next Thursday, we will visit with a craniofacial orthodontist at Primary Children's.  We won't see Dr. Siddiqui again until December or January to start discussing fixing his cleft palate.....once I came home from the plastics appointment, I had about two hours before my friend would be at my house to go with me to the G-tube class.  ....there isn't alot to say about the class.  It was informative to the point of confusing.  There are quite a few different types of tubes used and their are minor differences with these but the differences are important enough to be beyond important for your particular case.  At one point we were told a "peg" tube (the peg being the plastic part that is connected to the tube and seen from the outside of the stomach) needed to be turned once a day.  Then we were told if your baby would require a "G-J" tube (the actual tube that would go instead of in his stomach to go through the stomach and to the intestines) that this could not be turned as it would turn the coils of the intestines and be traumatic.  Wouldn't you know that Connor's surgery for Wednesday was cancelled because "peg" tubes were on back order.  Wouldn't you know Connor's surgery for a G tube may become a G-J tube surgery because of his reflux.    ......Contradiction???...yeah.    Also, the class discussed many things that simply wouldn't apply to Connor's particular condition and finally, I just sat back and thanked God that I had a great pediatrician that happened to train here at Primary Children's and knows all about these tubes and such.  I was nervous the first time we came home with Connor and his various tubes and all that was entailed with caring for him and the tube itself.  Today, it's just part of his routine.  Nothing too dramatic though I wish I could just throw a bottle in his mouth.   .....the G tube is a serious thing though.  I definitely got that from the class.  It will be a blessing in many ways but it is a very serious surgery.  For atleast 2 months, he will not be able to take a normal bath.  It will be an opening from the outside world into his insides.  If it were to be pulled out, it can close in 20 minutes due to the stomach being a muscle and contraction would take place.   ....all in all though, I know in time, it'll become part of our routine.   ......Connor is scheduled for his G-tube surgery on the 22nd of August.  There are other types of tubes that he could have but his particular doctor is trained for the peg tube.  I could get Connor to see another doctor and have a different sort of G-tube placed but by the time we would see another doctor, and have him rescheduled...it'd probably be right around the same date as he already has.  Part of me would like to see the doctor because honestly, I've only spoken with his GI doctor for all of about 5 minutes but apparently this is how things are done.  Connor has pages of files, multiple caretakers/doctors and this is where we are at.   .....so, I'm back to not taking breaks and doing our thing.  Tristan will be home Wednesday.  YAY!!!  Prayers for a good year for him and us during our teenage dramas.  Connor will see the craniofacial orthodontist and his speech therapist next week.  I am currently trying to get ahold of early intervention (where the heck did I put that number?!?!).   ....this morning, maybe denial again, I said screw it and after dipping a binky in Connor's mouth, I put thickened formula in his special bottle with the pigeon nipple (fancy nipple that he needs for cleft palate).  Yeah, I did it.  Because I'm his mama and I'm knowing him waaaaaay better than any doctor.  And of course, I'm thinking he's going to do this thing like he's never had an issue.  ...after 40 minutes, he may have got 10 ml (one third an ounce).  Yeah, crushing.  BUT, he loved it.  I will discuss it with the speech therapist next week.  I think the formula is too thick to even go through the stinking nipple but then again, he needs it thick so he doesn't aspirate the stuff in his lungs.  I'll binky dip later...or rather I'll dip the outside of his bottle nipple.    .....crappy road for Connor....sure wish there was a way to speed up this process.   ..........meanwhile, he was happy to be cuddled and have a bottle in his face.  .....Sawyer and Mikey are currently doing yard work.  ....things are good.  I hung out with a friend and her girls last night.  This past weekend I got to go to a birthday party (by myself!) and see good friends.  We also had some friends over one night and got to play a few hands of cards....nice.   .....all of these things going on with Connor are becoming not so dramatic but more of a routine.  It is redefining us I'm sure ....and in time maybe I'll see if we were affected the same as when we lost Ireland.  .....but, I don't think so.  Right now, I see similarities.  I see moods and how this has affected every member of our family in different ways but bottom line is, Connor is here.  He laughs and is even starting to play with toys.  He is aware and has all of his senses.  He will even be able to eventually eat and have a week with absolutely no doctor appointments.  ......and to end this, August has become my least favorite month.  Ireland was born and passed away during this month.  I miss her.  I love her.  ....this year she would have been 3.    We experience the entire spectrum of the DABDA formula some doctor came up with.  I wish she were here but know there are always going to be things worse than death.  We most definitely have accepted her not being with us.....but it will never mean we don't wish she were with us.   ....ok, prayers for a decent month.  Lots coming up and progressing forward is my constant task.

Connor's happenings as I sat and typed this up just now.

Night before last, Sawyer and Lucky hanging out during the olympics.  GO USA!

Tristan, last year.  Coming home in less than a week!...and this beautiful pic to remind the ladies he's beautiful!!!....and he's available again!!!!

And, my beautiful Irealand with her daddy.  I can only imagine her playing around with all these boys.....she'd be so spoiled!!!



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