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Saturday, September 8, 2012

the nurse care manager

Insomnia so sucks.  It's like you can feel your life force leaving you if you do this enough.  ...I try not to worry but as many a friend knows, it's what we do when we have babies.  ..........I do not always re-read what I've written on this blog so sometimes forget what I've previously written.  I know it's been about a week but I'm pretty sure I've gone on and on about I've been feeding Connor by bottle.  I am proud of this fact as his mom and as his chief medical cheerleader. .............I'm not sure if I touched base about genetics but he had that appointment this past Tuesday and basically his genetics found Connor to be a 'normal boy'.  Now, I don't understand genetics too much so can only explain that the doctor said this means when Connor developed in utero that one problem led to another and another leading to the physical syndrome of Pierre Robin.  Now, if he's found to have additional abnormalities, I let the geneticist know and he can further test specific genes to give us a better diagnosis.  Thus, he wants his eyes tested for near sightedness to rule out a syndrome known as Sticklers.  .....that test is in November but after the pediatrician's appointment on thursday, this test should be moved up much sooner when she calls to reschedule with her doctor authority.  .........I'm not even ready to evaluate what else can be going on with Connor.  Seriously, it's 1am meaning I've slept a total of 3 hours this night.  Yesterday, I slept a whopping 5 hours having woke up several times during that time.
Tonight I'm up because Connor lost weight this past week.  He lost alot when you consider ounces is a huge deal for him.  He lost 6 ounces in one week.  If he keeps this up, he'll be off the general scale for a growth curve.  I'm pretty certain he's already hitting close to the damn diagnosis of failure-to-thrive.
Now, I tittled this post the nurse care manager because I've avoided this person.  A nurse care manager is appointed to those kids that have complex special needs.  Connor is considered/evaluated as a special needs level 3 kid.  As I know it, we can probably go right out and get the special needs parking pass, apply for oodles of help and possible benefits because special needs 3 means you are definitely disabled and need more than the average sick-o.  (my disclaimer this post needs to be if you're special needs sensitive and are going to get all hung up on wording or emotions stop reading now)  .....well, to say we have ignored this diagnosis of Connor being special needs is an understatement.  We don't like seeing it in print and we don't like it said out loud.  Part of us feels like if you can't walk, then you're special needs.  Otherwise, your are whining and can park like everyone else, pay the extra fee like everyone else and basically, accept your additional faults and respect those that truly have 'special needs'.   ...obviously, I'm generalizing alot here because there are severe disabilities that I do believe fit in this category but come on, if you are younger and can physically work on your pain to improve yourself, I believe you should not strain the 'special needs' system.  ......also, I feel like I'm very insensitive to some mental disabilities but I openly admit I don't understand how debilitating these can be.  ..........the point is, I feel like I am admitting defeat.  Connor can not eat what he needs to get basic nutrition.  He has a swallow study this week that will let us know if he has completely stopped aspirating and we can possibly move into an array of atleast getting Connor to try more than just a thickened formula by mouth.  .......regardless, Connor has the g tube and part of me has fought him having it from the beginning.  ........I want him to take the bottle and goodness knows, he wants the bottle, but his body is a f#@ing ass to him.  .......yeah, I WAS in the military, my thoughts can take on a sailor's tongue in an instant so bear with me.  .........I felt like Connor was doing soooooooo good.  He was drinking the amount I was told he needed so why does he even need the g tube?!  I held no one in some bad esteem because I put him through the surgery of getting the g tube...I was just dang happy he was taking a bottle.  He has been so very happy having a bottle.  It is beyond obvious he likes the act of taking formula by mouth.  ..........the problem is, he works so hard to take what's in the bottle, that he is expending precious calories.  His formula is a concoction of additional formula added to his mix for additional calories and then a thickening agent so that he doesn't aspirate.  The problem's been that by the time I add additional formula and thickener, his formula expands and he's actually getting less calories each bottle.  So when I've been saying he's had all 24 ounces today by bottle...he may have only gotten about 18 ounces because also using the haberman bottle, the formula foams as it enters the nipple and beyond the lost calories through thickening and expanding, he always leaves about an ounce or less in each bottle he has.  He's also lost calories simply by drinking the bottle and then of course any spitting up.  ............When Connor was simply tube fed, no bottles, he received 4 bolous feeds of 100 ml an hour and then 40 ml an hour continuous over night for 11 hours.  This meant each day Connor got 840 ml.  His diet has remained the same as far as him needing that amount of formula.  .........but when he got the g tube, he couldn't handle 40 ml a night without some major gagging on reflux.  Tonight, I have him moved up from 15ml an hour to 18ml an hour and so far, he hasn't woke up gagging/choking.  ............I've not even bothered feeding him through the tube during the day because I've been pushing bottles.  This is a good thing but it's beyond apparent he's not getting what he needs through this method and plus, i've been informed that his bottles need to be thinned out a bit more and the problem with this is that if I thin them out, he'll reflux more.
................in comes the realization that I need help.  I've done just fine taking care of Connor and all of his appointments and needs until now.  This is beyond disheartening to admit, what I'm doing isn't working.  His doctor's have given me home cell numbers but obviously, I do not want to abuse these wonderful people in their personal lives.  ........I can not stress enough how wonderful Connor's pediatrician has been.  But, she has two babies of her own.  She's active with her family and her church.  She insists I'm fine to call her anytime but I can not continue to call her anytime.  It's wonderful I can but as in all things, just because you can doesn't mean you should.  .............thus, the nurse care manager.  As I've been told (and I have met this very nice lady), she can arrange appointments, stay on top of our schedule and assist in making sure Connor gets all of his care needs met.  She is a go to person when I have questions about his needs, she can get a fast track to any answers we're seeking at any given time, and she can even get our prescription needs met.  She's essentially someone that can be my 'right hand man'.  She can even be my 'life-line' when I need to gripe. ...........The nurse care manager is available 24/7 and must respond to any of my needs or questions within 24 hours.  She  is a nice older woman and had a son herself that was special needs.  .........I've avoided her like the plague so know nothing too personal about her.  BUT, she's been mentioned to me several times as in "don't forget Cathy is there whenever you need anything'.   .............so, here and now, I've made the decision I need the nurse care manager.  I've got to call this Cathy lady in the morning.  I need to vent about my wanting Connor on a damn bottle so please figure out a formula that allows him more calories per bottle.  I need to say I hate the g tube.  While other tubie moms proudly show off their children's tubes, I sort of shun our son's because I want him to freaking not need it......and I want a f#@king plan.  If I need to hook him to a damn machine to feed him more in the day....give me a more concrete plan of these are the steps we're taking to get him learning to do things on his own.  .......I'm proud that I have stepped up and made decisions for Connor but sometimes I feel like I'm conducting an orchestra when I have absolutely no training at all.  I'm learning as I go and lately, I feel like my orchestra is falling apart and I'm trying to keep everything together and instead ..........   you probably get the point here.
..........I obviously need this nurse care manager.  She's been a nurse for over 30 years and has dealt with special needs in her own home.  She is apparently a respected professional and only is given a handful of patients so she can truly be out our beck and call.  .............I hate to admit I need her but part of me is thinking it's time to get this help.  What bugs me is in doing this am I admitting Connor is special needs? .....lately, I've been trying to look at Connor from a stranger's view.  He's small for a full term baby that was born at 7lbs and 14 ozs and is now past 5 months old.  He's got a faint tint under his eyes like he's tired.  He can be soooooo happy but he can be a screamer too.  Sometimes when I pick him up, it seems like his bones are cracking.  Sometimes he obviously hears us, sometimes not so much.  I think he sees just fine but I stare at his eyes and wonder if their are signs to being near sighted, or having glaucoma or retinal detachment.  I stare at his chin and wonder if it's starting to recede back.  I watch him during his bottles and notice him munching but also that he is very much beginning to suck too.  I stare at his fingers and wonder if they're exceptionally long.  I feel his spine and wonder if it's straight.  I stare at his head and feel the bumps and soft spot and wonder why it's considered small and if something is wrong.  I look at his ears and wonder if they point to another problem. .........It's obsessive.  It's crazy.  It's me just wanting to know everything right now and wanting to fix anything and everything.

..........I've felt especially protective and cuddly with Sawyer lately too.  He's been teething and also starting to say Mama.  We all love the Mama part and love when our babies want to cuddle more.  ....I soo worry about one of my kids thinking they're not as important as the other.  ........Even with Tristan at 17, I don't want him thinking he's not  just as important as my littlest ones.

............I need the nurse care manager.  I need a little less to worry about and I need some help with Connor's needs. .........there are moments when I've truly got 50 things running through my head and I forget my basic math skills and make a facebook plea.  I even ask Tristan to figure the math for me and he knows his stuff, I won't post another facebook plea unless he's not home at that moment when it comes to this aspect of Connor's care.  ( I hate that...Connor's care.  But really, it's like a separate entity of our everyday funness...it's part of our lives but I'm still in some sort of denial...I don't know here, I'm shooting from the hip)  .........anywho, today I'll call Cathy and hope she calls back soon.

 
Naptime with Connor....yeah, total cutie.
 
 
 
We get these periodic smiles throughout most of the bottles.  He gets tired pretty quickly so I've noticed if I hold him more like this he doesn't tend to get as sleepy, plus the spit up factor is less because he's held more upright.  He tends to scream his head off the minute you pull the bottle away but stops the minute the bottle is back in his mouth.  When he's done with the bottle, you just try to burp him and eventually he stops screaming though I do my best to move to bottle from his sight.
 
 
 
Soybean tired but totally loving his music.  He's been a dancer from the beginning and man, he knows what he likes.  He'll be stiff as a board but if it's a beat he likes, he can't sit still.

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