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Wednesday, August 29, 2012

Today's thoughts

We've had the G tube going on a week now.  I initially thought we were the lucky ones who everything has looked nearly perfect since then but no.....our world is still feeling crazy.'',,,,,,,,,I am beginning to feel a bit crazy.  I've discovered different support type groups on facebook and yet don't feel like I am part of any of them.  There is the 'I love my tubie' site where all of the people in there are tube fed and throw around questions.  Not a bad group and has infants parents on up to adults fed by tube.  There is the 'Utah special needs' site.  This one I haven't quite figured out.  It feels 'clickish'.  There is the site for 'wide smiles' for those with cleft palates, lips and/or any diagnosis that affects clefts.  This one is truly only helpful to those babies born with cleft lips....it's like Connor didn't fit the profile because he looked fine on the outside...and no one had a clue about Pierre Robin or simply did not leave a comment.  ..............this learning how to live your life with a special needs child is not easy or for the faint of heart, though lately I'm feeling cracks in my personal system.  ......sometimes, you walk around feeling like no one has a clue what you are going through.  Connor is going to be 5 months old tomorrow and we are still figuring out what's going on with him.  He has a decent pediatrician that is amazing when she sees him.  We have her personal number but damn if I can get ahold of her the same day I may need an answer.  Part of me understands this because she has her own life and then the next part of me thinks why did you give me your number if you're not going to get back with me soon, or in a day, or at all?!  ...Connor has a very talented and wonderful Craniofacial Plastic Surgeon.  This man is kind as well as gifted.  He has transformed his jaw to where he can now breathe.  He's thrown in a prosthesis in hopes that it'll help Connor until he can permanently fix his cleft palate.  ...the thing with the plastic surgeon that I've loved is sometimes I wonder if he's looking at all of Connor.  With the tongue tie thing, shouldn't we have been discussing that the first time he looked in his mouth?  Also, we were asking questions about Connor's skull months ago.  His head measures at the 1% line of the developmental scale.  Shouldn't this be looked at more thoroughly than a glance and 'no worries, he's a beautiful child'.  No one would deny his cuteness...please don't deny that he needs some help out developmentally.  Our ENT is not going to win sweetheart-of=the-year but he is knowledgeable and came on board when Connor was having a difficult time in the PICU when he got his initial jaw distraction and had a horrible time getting off the vent.  I didn't initially like the ENT because I thought he downplayed everything.  Now I respect that he sees the complexities going on with Connor.  He is very involved with his swallowing issues, taking care of his ears, and does his best to calm us about this possible hearing issue we're now faced with (more on that in a minute).  Our GI...oh, we don't officially have a GI.  We have a kind surgeon that placed a G tube because it was recommended by Connor's speech therapist and pediatrician.  The GI department looked at Connor during a hospital stay when the distractors came out (and ear tubes placed) for all of 5 minutes.  The GI guys seemed to look at him and simply say 'we aren't even sure he has reflux'.  WTF????  They're also the one that went ahead and scheduled the G tube surgery that kept being cancelled due to peg tube shortages and the peg tube is what I'm learning Connor currently has.  ....I'm clearly pissed at these guys.  I need the GI involved.  ....one good thing is that his upper GI test showed reflux after simply 2 ounces of formula....I've been told this is a big deal because many times kids with severe reflux do not show it during these upper GI's.  .....Connor's speech therapist is wonderful.  She is young and not as experienced but has clearly taken an interest in Connor and this means alot to me.  She wants him to thrive and sees I'm taking daily notes and doing all I can to get him on the right path. .....Connor is also now in the Early Intervention program of Utah.  We just met these people, in our home, for the first time Monday. We filled out a ton of paperwork on his health history and he was developmentally assessed.  There was a nurse and an occupational therapist present discussing the basics of how the program works, the fees, and then the initial assessment of Connor being on a scale of a 2 to 4 month old.  This program will have a speech therapist, an occupational therapist, a specialist and mentor from the Utah school for the deaf and blind PIP {parent infant program).  They will devise a plan in the next week or two and we will be set up with once or twice a week visits from these specialists.     ............the school for the deaf and blind threw me for a loop.  We were informed at our last ENT appointment that there was a definite hearing loss, during the test the nurse mentioned a mild to moderate loss is normal with Pierre Robin, and basically we had so many other things to discuss that particular appointment that we put off talking about his hearing.
........well, now that I've gone on about his care just to where I didn't even hit the iceberg but gave a window into our world....I'm going to rant a bit about my current worries.  And trust me my worries have gotten ridiculous in length but each are important.    But right now at the top of the list is his hearing and this G tube.  
........first, the G tube.  I thought we were smoothly easing into this G tube thing.  We've been keeping him clean, figuring out how to best  keep him clothed and comfy (cut a hold in all his clothes), keeping his tube up and straight as we can (gauze ball underneath the tube...I'll post a pic), and vent him to keep gas at bay (just hooking him up to an empty syringe and letting gas come out of his tummy).  Well, he's rarely had the gas issue but has been spitting up.  His spit up still comes through his nose despite his new prosthesis and of course, out of his mouth too.  I hadn't noticed a major increase in his spit up so have just noted it on my daily notes sheet.   ........I have noticed he seems to do it more after I've given him bottles but he rarely has had more than an once and a half at a time (and I am still just doing two bottles a day though I want to increase this so he can be independent of the tube).  .......well, yesterday, I put him in my bed for a small nap.  I layed down with him since he would be flat versus his elevated bed.  He woke up a bit fussy and then had a massive puking/spit up session.  It was scary.  I had possibly given him about 10 more cc of formula in an hour's time than normal and he did have a bottle of an ounce before getting the rest of his nutritional needs through his bag (g rube fed)....but he puked a ton and his little tummy sort of spasmed.  .......well, I changed the sheets, had to let the bed dry out before adding new sheets and wrote it in my notes hoping this was a fluke.  ......sure enough, his next g tube feeding with no bottle resulted in a bit more spit up afterwards.  .......then I gave him a night time bottle, he barely drank 5cc before falling asleep, I hooked him up to his apnea monitor, and then his machine for his usual 40ml an hour he receives for a continuous feed during the night (g tube feeding).....and 2 hours later, I'm startled to hearing him choking in his bed.  ........His poor face was covered in formula that seemed a bit mucousy.  ....it was a ton again.  He was sort of doing the retching/spasm thing and I'd say he easily spit up most of what he'd received those last two hours.  His bed, floor and I were soaked.  I had disconnected him from his monitor and his feeding machine as I picked him up.  ...I tried to call his pediatrician but got no answer.  It was 10pm...maybe she was asleep...or didn't have the phone.  I tried to call Mikey but he was working.  I racked my brain on who to call.  I considered facebook but the responses can sometimes be nil or hours later.  .......I ended up calling Primary children's and asking to speak to the surgeon on call since his g tube was placed by the surgical unit.  .......I got a very nice intern.  Poor Connor was continuing to spit up and it had become more mucous looking and he was also just weak and tired.  ...man, this stuff is scary.  Anywho, talking to the surgeon, she said to decrease his feeds for the night by half and if we had it (we didn't) give pedialyte.  The next step was to call the pediatrician in the morning to get a same day appointment.  ..............Well, needless to say, I have hardly slept.  I finally went to sleep around midnight.  I wanted to hold Connor or sleep with him but felt he needed to be on his apnea monitor and in his bed which is at an incline.  ...He was asleep before I even layed him down and has slept all night.  I have to check his diaper this morning to make sure he's peeing and definitely get an appointment today.  He can't get dehydrated.  ....this is so very upsetting.  I don't want him on a tube forever.  I don't want him to get the nissan surgery (pronounced NI-Son...and the first question out of the surgeon's mouth when I called).  The Nissan is where they twist the top of his stomach and I have not researched it too much but he hasn't even been truly seen by the GI department.   .........ugh, I'm sitting here wanting to increase his bottles, throw a spoon in his mouth.............Connor cries for the bottle and wants our food when we eat for meals.........and meanwhile, his body is not allowing this.  ........depressing in a way I can not presently describe.
..........as for the hearing.  We were beyond surprised when the early intervention people said he was on the list for being added to needing help from the Utah school for deaf and blind.  First off, he hasn't been tested, but his eyes seem fine.  ..........we're aware of hearing issues but have not discussed them with the ENT. ......yesterday I called our ENT office to schedule an appointment and talk to a nurse.  The nurse emailed our doctor and we were called back and told that he'll be performing another kind of hearing test on Connor on Friday.  Ear tubes can affect his severe hearing loss results so he needs to be evaluated more closely this time.  ......I have googled all I can think on this subject and am just left feeling like he'll probably have hearing aids.  Most kids with the severity of Pierre Robin he's had have up to an 83% loss of hearing (a few reports stated this same number) and are usually helped with hearing aids and tubes.  I'm a little confused that he has the tubes already and is still showing such a loss for hearing but I'm in the beginning stages of this latest diagnosis so don't know too much about this topic.  .......this was the scariest thing to me yesterday morning and by midnight last night, I feel like now the g tube is my scariest thing.
..............I hope to get an early appointment with the pediatrician this morning........and I also hope I can fit in a good nap today.   ............Stress is getting to me.  I have a love/hate relationship with facebook because I want answers and to hear from people dealing with these same things but I'm learning each special needs baby/kid is unique to their own issues.  The parents of these kids are also stressed.  I think the comparison game plays in our heads and sometimes you feel support, sometimes you simply don't.   ...............I will say I have atleast one friend that I've met through technology that has been an immense help to me.  She has more than one special needs child and she manages to relate to me, make me feel less alone in this initial journey of discovery with Connor.  If I only have her in my arsenal of truly relating and understanding my ups and downs, I think we'll be ok.  ........I do feel support from my friends and family....and trust me, I need it.    ..............please continue to pray for us....tomorrow is also what is known as Ireland's 3rd angelversary....
....and yes, I feel like that person that has nothing good to say so should possibly say nothing........but this is my life right now and I have to get these things out.

 
Family that was here for an entire week.  I think they and I were worried about Connor having his g tube surgery smack dab in the middle of their visit but it ended up being a good thing...a blessing even.  We all had a great visit and I miss the babies terribly.  Hannah, Alex, and Whizzy(Winston), we wish  you lived next door!  Sawyer cried all afternoon when you guys left.
 

 
Sawyer, completely pooped after a day at the beach (Pineview).

 
Connor, after the beach.  I was in a complete panic mode our entire time there wanting to make sure he didn't get an ounce of sand on him.  And he didn,t.

 
odd picture of the gauze ball I use around Connor.

 
Sawyer's fav book.

 
Connor in his bouncy toy.  We place the wii under him so he feet touch.

 
Brother time.

 
Tristan resting.  He's been looking for jobs and a major help lately!

 
Connor laughing.

 
No oral aversion here.

 
i want to eat this entire pound cake....but it's for Mikey and his coworkers.  A friend is retiring.
 


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