Monday, September 17, 2012

Please Don't.....

First, I want to touch base on last week's various appointments.  If you read my facebook account some of this may be straight up repeat for you.  ....anyway, 1st off we had the Early Intervention team stop by the house Monday morning.  For Connor, we had an administrative lady, a physical therapist, occupational therapist (speech) and a lady that deals with sign language.  In short, we decided he did not need physical therapy at this point. Though a chart may say he's behind, he's actually quite well physically for the amount of time he has spent in hospitals and recovering from each of his surgeries.  Yay!, Connor!!!!  Occupational therapy will come by once a month to see how he's doing and also to touch base with our current therapist.  He has quite a bit more experience and may be able to throw in some needed advice here and there..............the eye opener at this appointment was the signing lady (I am completely unsure of her title, so henceforth, she is the signing lady).  I basically asked advice which she had to be partial and also why on earth Connor would fail one test and pass the next.  She said in her experience, and she had a ton, that Connor would simply experience fluid problems because of his anatomy for some time and that she did believe because of the failing of some of his tests, he still really needed a sedated ABR test to see that his actual hearing past any basic fluid problems was ok.  She said she believed he'd have intermittent hearing loss because of constant fluid issues but that she felt she was there more because his problems would stem from how he spoke.  The anatomy of Connor's tongue and lack of palette will cause him so major issues.  Even with a prosthesis and eventual repair, Connor has an extremely high palette, his tongue doesn't seem to lift at all in the front and yet raises in the back, even swallow studies show a unique way of pushing fluids up into his nasal cavity....Even with repairs and clipping of Connor's tongue, he'll most likely have a rough go at learning to speak well.  Of course, time will tell if he beats these odds but a look in his mouth says to prepare now and give him any advantage.  Even the anatomy of his gums are different and as teeth enter, we'll go exploring that route at that time.   .................Later that same day, Connor had his swallow study.  I brought along the haberman bottle that I've taken to feeding him with and asked that he be tested with that.  I also asked if we could push his seat in a more reclined position.  When he's tested, he sits in a sort of beltless car seat.  There is an xray machine facing towards the side of his face and a speech therapist feeds him one ounce of barium formula that is scene through the x-ray.  She does this at different thicknesses and a doctor and technician (along with the speech therapist) record and watch the video each thickness to see how Connor swallows each.....I still felt that Connor wasn't really seated reclined enough to mimic a regular feed, but it is what it is.  .....Connor showed what is called silent aspiration with thin fluids and showed that he was handling nectar thick(thicker than standard formula) and then honey thick (even thicker than nectar).  My problem here is I'm positive he's aspirating the nectar thick.  I know this because in one week's time, he went from being perfectly healthy while I was feeding him honey thick to horrible sounding lungs from one week of nectar thick (per the expert's instructions)..  ...Well, the day came for speech therapy.  I woke up needing to be in the bathroom from being sick.  Both ends, mind you (TMI, I know).  Anyway, armed with the notebook I keep and a page of notes, Mikey went to Connor's appointment.  He was a little nervous because he's normally watching Sawyer when I go to these appointments, so this was a first.  And, my control freak self was nervous because I felt there was a ton to discuss.  ....Anywho, Mikey let her know what I felt about his aspirating and the therapist came up with a plan.  She wrote it down for me.  I'd feed him for 5 minutes on nectar thick, 10 minutes on honey thick and then give the rest through his g tube.  I was to find out amounts from the pediatrician....ummm, NO.   ......I got better, and went to the pediatrician's office later that day.  Connor ended up gaining one whole pound  (14lbs, 6oz.) so that started the visit nicely....after our normal chit chat and general care talk (he had a little eczema on his legs), we took a look at the feeding plan.  She had taken the time to look at Connor's swallow study notes and was also concerned about how bad Connor sounded.  Like I said, one week and he all of a sudden was needing me to suction him.....long story short, we made the decision to stick with feeding Connor honey thick formula.  I'd stick with the plan to get him 900mo (30 ounces, not including thickening) a day.  I'd continue with the 5 bottles during the day and then give any extra calories at night.  I was also instructed that the minute I believed Connor was getting worse or he started to get a temperature to bring him into her office because his lungs sounded horrible.  And when I say I started suctioning, we're talking the hospital grade suction machine.  I'm doing this atleast 3 times a day and getting a ton of mucus from Connor.....and right now, it's the reason I've been up since 1am.  During this weekend, Connor's 'snuffles' have made him to where he can hardly breathe for a bottle.  We've gone from me making him a 5 oz bottle (that is about 6.5 oz by the time it's thickened) and him drinking all of that, to right now he may get a ounce or two in 20 minutes time.  I've tried three different kinds of bottles, different nipples.....he just can't breathe right now, so I've had to resort to just giving him some of the bottle and then he's been handling bolous feeds of 120ml an hour (or 4 ounces in an hour).  ...also, I'm not really sure if I should even be giving him what he is taking in the bottle because not only is he trying to breathe as he's swallowing (which causes aspiration concerns) but his body after about 5 minutes starts stiffening and arching.  He's having a tough time, gets totally and physically agitated but screams for the bottle because he is physically hungry  ...what to do?  feed him a bottle because he is hungry and you don't want him to develop oral aversion or tube feed because he's definitely not aspirating but then you're taking away hunger and leading him away from knowing he needs to take nutrition through the mouth.,....then again, he refluxes, so tube feeding may actually introduce more aspirating because he tends to aspirate the reflux...UGH!,,,,also, as a sort of side here, we tried feeding him rice cereal at his speech therapy and also once at home.  That deserves it's own post.  It was cute initially, as all babies are with their first time eating.  Then, it was just a train wreck of him having no clue what to do with the stuff, sucking it in because he thought it was choking him, and then not wanting anything to do with a spoon near his mouth. me, it wasn't cool.
..............this is the point where I'm going to make sense for my bog post title.  ...........I guess I'm increasingly accepting that Connor does have issues beyond just a quick fix surgery.  ....yeah, it's taken some time beyond the obvious.  Judge me when you walk in my shoes.  ........Anyway, I suppose because I'm more accepting that Connor does have some extra or "special" needs that I'm becoming increasingly aware or shall I say, offended by comments I'm getting.  .........Most everyone in this world is nothing but supportive to our family and understands we are going through hard things.  There isn't a soul I know that doesn't wish our troubles were gone and in that, not a friend or family member (ok, maybe an idiot or two but we all seem to be deemed one or two idiots....anywho,) that would openly want to offend us.  BUT, it's been happening. is this posts disclaimer because I have a knack for offending someone out there in being blatantly honest....well, get over yourself and just see this for what it is.  This is a small education on what someone with a special needs child would appreciate you not saying (and trust me it's not even the tip of the's just one or two basics).  ..........ok, with that I'd ask you to Please not compare your child to mine.  I've had to teach myself not to compare Connor to Sawyer and Tristan and every other baby in the world.  God made us each unique so damn the charts.  Connor is not average anything.  And that makes him just as special as my other kids that were either perfectly on scale or my daughter that was also off the charts..  ..........Connor was not a preemie.  Yes, he's small.  He can't freaking eat.  He refluxes.  He's prescribed 4 medications just to keep what he does eat where it is supposed to be.  He has a med if he doesn't poop.  He has a med for "motility" so the formula is processed.  He has a med to keep acids down  I chart his input and output.  If I did half as good in school, I'd be a dang doctor now.  Bottom line, Connor was not a preemie...Please don't compare him to one.    ...............and I'm just going to hit my all time hated one and this'll be it for now.  Please don't say "do you think if they just treated him normal, he'd be fine".  Now I've heard this one more than once.  I usually just get really quiet.  ...not a soul that has said this meant a bad thing and really, they're just wishing this for Connor.  But, as I'm quiet, I also want to scream at the top of my lungs a few terribly explicit things.  For instance, I'd love to say "You are a f#$king genius!".  Why, you ask?  Because I've tried every damn bottle made on mankind.  We probably own every nipple out there.  I have every size bottle there is, I have a bottle you can squeeze, bottles that only fit certain kinds of nipples, vented at the bottom, vented at the top, not vented......I have long nipples, short nipples, slow, medium, and fast flow nipples, wide nipples, compression nipples, squeeze name it, we've tried it.  Not one standard nipple works, no bigger cut holes work, the compression nipple may work one minute and the next minute he's getting too much or not enough or just doesn't want it.....the next time it seems if I push a little more in his mouth with the extra long haberman nipple, that is working and then two damn seconds later his face turns red or his body contorts or we've got a fucking situation of epic amounts of formula coming out of his nose and mouth.  PURE FREAKING GENIUS!  Let's treat him like a normal kid., PLEASE, don't state the damn obvious.  I'd love to go grab a bottle from the local wal-mart, put some formula in it and feed him.  Better yet, you holier than thou mothers that think breast is best....well, I think it's great too but I'd kill him if I relied on that.  Better yet, you stick a normal bottle with normal formula and torture him into a slow death.  ...........I HATE the G tube!  HATE IT!!!!  I HATE carrying that damn back pack.  I HATE figuring out formulas of what he needs.  I HATE thickeners.  I can not stand the process of making thickener.  The nasty dust of xanthun gum mixed with alot of water looks like I store a small vat of snot in my fridge.  It is disgusting.....Better yet, I HATE that I can't give my son basic nutrition.  I hate the thought that I'm possibly hurting him when I feed him.  I hate that when I have to use the g tube that I now have to worry about him aspirating his thin liquid reflux.  ........There is not an easy thing about any of this.  I am very good at a game face.  Ninety nine times out of a hundred you will think me perfectly happy, easily conforming to my current life, on top of things...even possibly thriving with the chaos.  ..............sometimes this is the case, but usually I'm just swallowing a hard pill and trying to keep myself and the rest of my family "normal".  I'm trying my best to get Connor as "normal" as I am able to.   So, with all my ranting on this post, please just leave the freaking word "NORMAL" somewhere else.

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