Tuesday, May 29, 2012

Special needs parenting, alternate 1

(As recommended by a friend)

i've always been a little neurotic, now i'm even more so...
and despite my best attempts, i will always be...
so, get used to it :) 

Special needs parenting...

We can be a neurotic, hard to deal with group sometimes... here are a few reasons why.... (of course, these are generalizations and don't apply to everyone.)

1) Our childs' health depends on it (ex: a friend recently posted that someone tried to give her son a sticker at the store. She politely declined and the cashier gave her a dirty, dirty look.  Her son is allergic to most adhesives on stickers.)   We get this occasionally when we don't order Micah anything off the menu.  Seems that children are becoming more complex and staying out of the hospital with more and more complex problems.  A lot of these children seem perfectly healthy, but are not.

2)  It's our house! We are blessed and cursed with nursing coverage in our house.  Having someone in your house is the most frustrating experience in the world.  The nurses have quirks that they bring into your house... We do things a specific way (everyone does in their house!)  and in our experience they're always doing something frustrating, even if it's not negligent.  There are always therapists in the house (for early intervention)... i gave up caring only a few months into it.  The therapists are practically family.  if there's a space on the living room floor large enough for them to work, good enough.

3) We have extra obligations. Ordering and picking up prescriptions, gettting orders written for nurses, ordering (and being there to sign for) supplies.. and they're filled incorrectly about 75% of the time... doctors visits, therapy appointments (3-4 per week, here)...Wasting our time is a borderline dangerous activity... we deal with incompetence constantly... sitting on hold with equipment people, insurance companies, waiting for doctors appointments who are usually running late... it's insanely frustrating. 

4) We realize we're missing normal, and it (still) hurts. Some people deal with this better than others... I'm a "than others", probably.  it's not that we don't accept our child for who they are-we're their biggest fans!  We adjust to our lives, but realize they're not normal. There's no dropping them off at school, at the nursery at church or anywhere.  Some days I don't even feel like going out...we feel the stares and get them everywhere.  Everywhere. 

5) We are forced to make incredibly complex decisions, frequently (and have to live with the consequences)- This was so apparent last surgery, when the docs weren't 100% on the way to proceed, and if the surgery would help.  Man, that's a really tough place to be.  With the post surgery infection we had one doctor telling us one thing, and another telling us another.  One did the surgery but hadn't seen him since the infection, the other had only seen him with the infection.  These decisions are incredibly stressful and we feel unqualified to make them.  They weigh on us immensely.

6) Things are frequently more complicated than they appear-  Yes, we regularly stress about colds, fevers and normal childhood stuff.  Colds=slowed down belly=vomiting (and for the trached, being suctioned 5x more than normal for weeks) , fevers often mean trips to the ER because of our children's complicated problems. 

7) We sometimes struggle to relate to parents of healthy children-  When we don't seem particularly empathetic about your fretting that your child needs his/her immunizations, it's probably because we're not.  We don't mean to be cold, but we've seen our child poked as many times in a week, sometimes a day, as a set of 5 years of childhood immunizations.   It's not that we don't want to hear about your children, but we can't really relate.

Most of these things were crystallized in a our experience with a Mom's group.  I couldn't find someone to watch Micah for months, so he tagged along... there was always medical crap going on and I felt that I was always dominating conversation with everything we had going on (even though I didn't mean to, or even want to)  The group was great, no question, but we didn't fit in.

All of these can be excuses for not participating in everyday life.  it's REALLY easy to drop out relatively unnoticed.  Everyone assumes you're busy (and you are in some ways), but we also have the same needs as every parent... of anyone.  Many special needs parents are in amazing groups on Facebook, where we can feel so much more normal... but we still need real life relationships.

So, I'm  tired, over-stressed, not overly empathetic, overly focused on our problems, I'm sorry.  I'm trying. Some days go over better than others.

Fun weekend

You wouldn't guess this was Grandma's birthday party, would you? :)  He had a ton of fun playing in the water and in the shade.

Friday, May 25, 2012

That drain...

Apparently someone must have thought it was amusing that i said surgery went well, beause we've had drama ever since.

i'll spare you the gross details, but suffice it to say, we have more infection problems... and no plan, because it's friday night, the ER doc won't do anything and apparently no one is convinced this is a problem. 

*bang head here* 

Wednesday, May 23, 2012

i.e.p. madness

Well, the i.e.p. meeting was great and awful.  All at the same time. What they addressed, i was very happy about.  What they didn't address, though, was the most important thing... his medical plan.  Why didn't they address his medical plan?  They didn't have any information on his medical history.  Did they request it from the doctor? Did they ask me to have the documentation?  Did they have me sign a release of his medical records?  NO.  But honestly, the assistant director of Special Ed came to the house, and met Micah.  They had, in writing, a short medical history that i'd typed up.
They were evaluating him for "Other health impairment" (i.e. a medical/psychological condition that interferes w/ their education) 


Big shock, they couldn't rule on other health impairement, becuase they didn't have the information.  Despite the fact they had done all of the other fact checking they needed for the other issues, other than Deaf/Hard of Hearing, in which they requested an audiology screen in the 14 days between his eval and case conference.  Believe it or not, that didn't happen, but at least i was sort of warned.

In short, they didn't want to discuss it.  And of course, school ends in a week.

I was MORE than clear when the person came to the house that my primary concern, by FAR, was his health and safety (duh).

After a little discussion, it was clear that their plan was to informally train the para's (aide's) in the room to care for his trach.  On top of this, there's not even a nurse in.the.building.  Apparently they don't realize my child could stop breathing at any time, and that it's a HUGE liability to only have informally trained people around to deal with emergencies.  Not even a nurse in the building... this can not possibly make sense to them. And why one earth would a para take on that responsibility?  if something happened, it would be on them... and the school.

UGH. So, the services they did offer were great, speech 2x for 20 min, OT 1x for 20 min, PT 1x for 20, and really that's all they can offer, so that's great.  The teacher uses sign in the class, and they're ready and willing to support his use of sign, but also develop his verbal speech.

My goodness, this is ridiculous. 

Monday, May 21, 2012

ER and home, waiting

We ended up going to the ER yesterday evening, and good thing. His drain was infected.  They removed it and sent us home with a script for another antibiotic.  His fever went up overnight to 102.4... and then went down into the 99.5 range where it stayed all night without meds. Went to the Ped this AM and he was concerned about the cellulitis in the surgery site (as am i)... He's going to let the new antibiotic have a chance, but if he gets another fever in the next 24 hours we will be admitted for i.v. antibiotics.  His temp went down to normal this morning, but is in the mid 99's now. 

He has his first school case conference tomorrow (regardless of the fact i haven't been able to prepare at all for it!)  We got his reports this afternoon, and with what i've seen, he will qualify for multiple reasons, and will get extra PT and Speech at home, and OT hasn't come yet... Deaf/hard of hearing services will wait for an audiology screen, which, believe it or not, didn't get done since they requested it 14 days ago... been a little busy.  He'd get more sign language support if it shows a loss, which it may or may not. 

Well, i need to prepare for this massive meeting, so off i go. :)

Sunday, May 20, 2012

16 hours...

16 hours of on and off fever.  Most people probably don't panic about these things, but i do.  Too close to surgery, too questionable whether it's an infection or a virus... His temp hasn't gotten about 101.5, so that's a good thing, but if it's an infection it can become a serious problem very fast (7 days of i.v. antibiotics bad).. and of course, this started on a Saturday.  We've been in contact w/ ENT and the on call Ped, and so far have stayed out of the ER.  Hopefully we'll get into the Ped tomorrow and can find out more, there's not a whole lot anyone can say without seeing him. 

Hate this disease!

Fighting off a fever and questionable symptoms of infection.  Hopefully he responds to tylenol and the fever goes down fast. 

Thursday, May 17, 2012

Return to the docs...

We saw both of the operating surgeons this afternoon, and both were pleased enough with how things are going.  Micah always drains and drains, and no big surprise, only 7 days post op, he's draining.  The better news is it's about half as much as the previous surgeries, so our labs should stay decent longer (tis inevitable we'll have issues, but maybe not for awhile longer...)
M's mouth is opening great! :) His speech therapist actually saw his throat for the first time ever! She was so happy she was giggling.  For us, this is one of the best things we've heard in a long time. 
We're going to put tonsils and adenoids surgery/airway surgery on the list for July.  That one has me nervous... tonsils, of all things, LOL!  For someone w/ LM the inside of the airway is not smooth...

Well, i'm half asleep, long day.. probably should stop blogging now.

Tuesday, May 15, 2012

Genetics, neuro, speech and orthotics, oh my!

Phew. Busy day. First neurology appointment went well... it was frustrating because it was insurance of all people demanding it, not a doc so i felt silly even going! The doc was great and thorough. He wants to run genetic tests, though, to be sure we're not missing something with Micahs many delays and issues. We had an amnio w/ him, but this will be much more thorough (it's a chromosomal microarray for those who that means anything...) Didn't seem he thought something was wrong, but wanted to be sure because things have been so complicated to date. And so we wait... So, instead of our first hour between appts, we went to the lab.. poor child has been stuck so many times in the last 5 days. 
 Speech got started late, but she was more than thrilled w/ the difference between pre and post surgery, he already is vocalizing in a wider range because his mouth can open. She was in giggle fits! :) That was great, and also, we got into the orthotist right after speech, instead of waiting an hour and a half! Score! Now we finally have our "georges", his SMO's. We'll see how that goes.
Long story short, long day...

Monday, May 14, 2012

Meet "the bag"

If you've met us, you've probably met "the bag".  Some call it a "go bag" or an "emergency bag", but we call it the red bag.  Don't worry, we realize our lack of creativity.  :) It's chronic.
This goes everywhere Micah goes, because.. it has to.

By the numbers.
9.5- The number of pounds it weighs (it weighs the same as Micah weighed when we brought him (and the bag) home from the hospital.
1- Suction machine, could be easily confused for a small airplane when turned on.
2- Trachs, one regular sized, one smaller  in case the trach comes out. 
3- Suction kits. to suction with
5- Saline bullets- used to drop saline into his trach to thin out his secretions
2- HME's- the humidifying "nose" that covers his trach.
1- extra G tube and medicine syringe.
1- emergency resuscitation bag in case he stops breathing

Our bag can house more, but we usually have most of his other necessary supplies in another container, which goes in his diaper bag.  Eventually the bag gets too full and we can't shut it.

So, when you complain your diaper bag is too heavy....  you won't get a lot of pity from me.  :)

Trachs, trachs, trachs!

Here are a few Q & A's about trached life.  Sorry for not personalizing it... it's not on my to do list today... it's quite lengthy. 

GTTAW Educational Question 5: Can people with trachs talk, sing, or make any sounds?

There are many ways to Achieve Vocalization with a Tracheostomy

One way involves covering the tube. Having the patient cover the tube by holding a finger or placing a cap over the tube for short periods of time can be considered a solution. This may, however, cause increased resistance to breathing that is intolerable to some patients.  Some patients may get enough air for speech without blocking the tube, but may not have the awareness, muscle movement or muscle tone to make a good occlusion.

Other ways include Talking/Speaking/Speech Valves as an alternative, a variety of valves are available that can be attached to the tracheostomy tube. These valves allow air to enter via the tube, and exit through the mouth and nose.
GTTAW Educational Question 4: Can people with trachs eat?

Having a tracheostomy usually will not affect the eating or swallowing patterns. Sometimes there are changes in swallowing dynamics that require adjusting to, but it is rare that this cannot be overcome in a short time. If swallowing problems do occur, it is usually due to limited elevation of the larynx or poor closure of the epiglottis and vocal cords, which allows food or fluids into the trachea.

Due to the varying conditions that require tracheostomy tubes, many patients (especially infants and children) will have feeding tubes placed as a supportive/supplemental means of nutrition and hydration to minimize the risk of aspiration.

GTTAW Educational Question 6: What about baths and swimming, doesn't water get in the trach?

Specialized equipment is available that can be used to stop water from going into the stoma for swimming and even baths. Once a tracheostomy has been performed, it is not possible to swim without using specialized equipment unless the stoma (hole in the neck) site has healed completely.

Baths and swimmi
ng can be done without specialized equipment as long as the water level is kept below the chest with no risk of splashing into the trach. It is considered irresponsible to swim or bathe without speciailized protective equipment, however more experienced trach patients and caregivers have the experience and knowledge to handle these situations safely.

Sunday, May 13, 2012

Global Trach Awareness Week!

Not only did this year bring the 2nd Annual Feeding Tube Awareness Week, it brings us the 1st Annual Global Trach Awareness Week! 

Unfortunately this week things are a little crazy, but i hope to bring you some tidbits on the trached life!

Love the slogan :) Trachin' it one day at a time!

Happy Mother's Day!

Today was supposed to be spent recovering from surgery at the hospital, but we're home.  We don't have any plans, and pretty much no food in the house, too tired to go out... but, if eating ramen noodles on Mother's Day means my baby is home, it's the best Mother's Day i could ask for .

Micah is doing fine... the swelling has stabilized and hopefully that means no rush trips anywhere. 

Saturday, May 12, 2012


Home but having swelling issues.  Not entirely sure what's up.



Friday, May 11, 2012

Sleep, please!

Our awesome giant train balloon :) About as big as he is!

Woohoo, and open mouth! :)

The side view, still very swollen (tissue swelling, not lymphatic)

Got plenty of new toys and fun stuff from both grandparents

Get me outta that room! Funny though, it about put him to sleep!

Feeling much better by this afternoon, up playing and causing trouble!
Alright, i've played every card i can to let Micah and i get some sleep tonight. So far the planned interruptions are 10pm-minor, midnight-minor 3am minor.. 4am LABS! :( 7am- weekend rounds. Sadly, i'm actually pleased w/ this, lol. All is still set to leave tomorrow AM. Dr. E was by at dinnertime and said everything is doing well and he's very pleased. Micah has ate a little ice cream and seemed to do fine opening and closing his mouth. Praise the Lord! :)


We are probably leaving tomorrow! Whoa!

Thursday, May 10, 2012

Pretty decent day

Surgery started on time, and even almost ended on time, only 20 minutes late!  He slept for probably two hours and hasn't been up much overall.  They were able to get the opening they wanted which was the whole goal of the day. Dr. E did a little more on the right side to bring that down a little if possible, but really the results we have already are pretty good in the world of LM.  We'll try to do a little more sclerotherapy, maybe next time (2-3 months) and lots of airway lasering. 
Micah lost a front tooth in the process, something isn't right that his teeth come out this easy.  They didn't do anything in the airway this time.  Hopefully today will lead to good results in the future.  The docs were pleased when they came in, and that doesn't happen much.  :)
He's fast asleep, and now we're playing the pain game... trying not to over medicate him but still have his pain well managed.  Morphine and tylenol will hopefully be all we need... Dr. E and i agreed that we are here for pain management and not the drain... So that should shorten our stay.  Hopefully we can get out Sunday or Monday... that would be SUPER.  We already have to be here Thursday for a post op visit.  Still no word on whether her needs iGG.  it's about a 5 hour affair, no big deal if we're going to be here but the results may not come in for a couple of days... Silly labs. Maybe it'll be something we do Thursday when we're here.
We're on a different floor than usual, so no familiar faces :(  And no spoiled rottenness.  Hopefully we can get to the playroom tomorrow though if he's up to it!


Got out at 3 and doing fine.  More once he's asleep for the night. Docs are pretty pleased.

Waiting game.

Surgery started on time.  They're saying 2 1/2 hours, but always hard to say w/ these.  (That would put us at about 2:30) No updates as of yet.  

No updates as of 2:30.. they should be done soon, but i'm not holding my  breath.  

Tuesday, May 8, 2012

Today's To-Do List/What got done

1) Call nursing agency (forgot)
2) School system eval, 8:30-10:00
3) Call nursing agency #2 (remembered!)
4) Text nurse to come over from 10:30-1, short shift!
5) Meet w/ nursing supervisor, leave at 11.
6) Get interrupted by call from hospital... (then call Travis, and text others details)
7) Run errands: Walmart, groceries, post office, video store, be home by 12:30
8) Get call from Travis that Ped called and said they found someone to supply his medicine, phew!!
Napping child!
6)   Call Apria (ooh! Got out of $150 bill!)
Alright, it's 2:30... Not doing too bad.  Still left... 
7) Call neuro and reschedule
8) Call nursing agency again. Yes, really. Believe it or not, she's not my best friend.
9) Finish packing...
10) Pick up aforementioned medication (trip 3 to town... really wishing we weren't 10 miles away!)

That's as far ahead as i'm willing to think.  You can probably guess why. 

But, for info: Surgery is at noon.  They scheduled if for 160 minutes, i want to say (2 hours 40 for those who try to avoid math).  Really have no idea how accurate that'll be.  Bummer thing is if we want to drive straight through and not stop we have to leave at 6:15, and i'm not sure we can get away w/ not stopping for 4 hours w/ a got up too early 2 year old. 

The evaluation was... tolerable.  After about 45 minutes he was toast, and they could tell.  Hopefully they got a decently accurate picture of him.  What they wanted him to do in PT wasn't hard at all (baby steps on a staircase, trampoline w/ handles, etc)  Only thing he couldn't do was walk a straight line on the floor and walk sideways on said line.  Not sure if 2 1/2 year olds are supposed to do that! Time to put him in gymnastics :) :) :)  Wouldn't that be funny?

Monday, May 7, 2012

The big eval...

So, my baby is about to enter the school system.  First, I'm not sure how this is possible.  Surely he's too young... he would be too young if he didn't qualify for special education, so i feel a little better.
Tomorrow is his big evaluation, and they have two hours scheduled.  Apparently they forgot he's TWO.  This could be very interesting.  Apparently they'll have a ton of papers to fill out, but I'm not sure what more they could possibly need beyond the pages and pages of info i filled out earlier.  A few people have given me pointers, but that doesn't mean i don't feel i could be completely blindsided...
Plus, no one loves to have their child evaluated when they're going to find problems... he's perfectly fine the way he is!  Sure, he's delayed, he's been since day 1, but i've gotten over it, and so you need to follow suit!  Hopefully he gives them a good clue of what he can and can't do, so he gets what he needs.  That's what's important.  *repeat often* 
Well we're off to play outside, because he wants his shoes so he can go outside.  And.. its not raining. :)

Friday, May 4, 2012


For the last three days, M's needed to be suctioned more frequently and has been feeling warm.  No fever, but these are not things you want to see this close to surgery.  The good news is that it's not changed over the three days, so we're hoping it's allergies/change of weather.  For some reasons a lot of trach children have more trouble w/ weather change.  Either way, it can cut it out!
Other problem is they can't get his reflux medicine.  The compounding agent is on back order, and insurance won't cover the drug in any other formulation.  This has been an ongoing problem from what i hear... and it's so frustrating.  it's sodium bicarbonate! Not rocket science!  We can not be without this for more than a day or two or he will start throwing up, not what we want before surgery.. or ever. Usually once he gets going, it's hard to stop.  So we'll see how much it is and if we can get a couple of days worth to tide us over.  He's not responded well to similar drugs in the past.
Oh, what fun!

Update: We ended up buying a different formulation of the med without insurance. Glad we have insurance, lets say that! We got enough to last us til we get to Cincy.  Couldn't chance having issues at this moment.  So far the potential cold is holding steady. Hope it stays that way!  

Wednesday, May 2, 2012

Healthy baby...

Healthy baby girl!  We're so thrilled that she is doing great!
The high risk doc was glad to see Micah (he repeated, a miracle baby!) doing so well :)  He also said he doesn't expect to need to see him again... yay!
Baby was plenty happy to show us her face and profile, we have some great shots!  The ultrasound tech was 99.9%-paint-the-walls-and-go-buy-girl-clothes sure we were having a girl, even this early.  So from here on out the plan is to go the "normal" planned c-section route! 
She was a little squirmy but cooperative!  She was moving her mouth and moving her arms.  And, big surprise, she was sitting on her feet.... and sitting cross legged... :)  Everything measured nicely for her age, and even a little big!
We're all so thrilled and are praising God for a healthy little girl!  :)