and....my week takes a 360....

It's amazing how this happens...
with one phone call....
my whole week is flipped upside down!

The caller I.D. read...
Lighthouse...
my kids school...which usually only means one thing...
one of my kiddos is not feeling well!

Oh, my poor Hailey Dee...

I run up there and she is lying on a cot.
The teacher said she had been complaining she was tired all morning...
but the real clue...
Hailey didn't want to eat at snack time...
and it was a rice krispy treat...and Hailey LOVES to eat!!!!

So I took her home.
The minute we get home she is in the bathroom throwing up.
She has been in there alot since we have been home, and not to be gross...but....
both ends...poor girl.
She has tried drinking water...
that is coming up too...

here I thought I was going to be making some great money this week...
and I had to make the call...
because 2 young kids were being dropped off at my house at 2p.m. today
and I was suppose to care for them from 9-5 this week and next...

I make the call to the caregiver who I was replacing for the next few days and she informs me she has been planning to call me because they had to cancel their trip due to personal circumstances!

So now I am loosing that job plus no work tomorrow...

In the last hour we have gone through 4 pairs of pj's and panties!
Hunter is sequestered upstairs (total hypochondriac)  in fear of the dreaded Hailey and stomach flu...

I am now managing barf, diareaha, and seizures......between 2 kids....
now that's a juggling act! (no, I don't want you to feel sorry for me.)

So why do you all need to know this????

Because I need huge prayers lifting Hudson up and out of the realm of possibility of catching what Hailey has...
and you can add Hunter and me in there too!

Oh, thank God I had a good weekend ....my week ahead....

questionable!

*************

 I just have to share this...
because our pastor speaks a good hour when he preaches...
which is awesome...
but now you can get higlights or snippets (they are 8 min. or less!) from his sermons...
which are waaay shorter...and I know many of us don't have an hour
to sit at the computer and listen to a sermon.
I am fortunate...I go to Mars Hill....I get the whole hour :)
This was from this last Sunday...
and I just need to share...because it is always good stuff...

Great weekend....in spite of the *usual*

Finally...some fun......

we had a very busy weekend....
the greatest thing ever...
was seeing the sun shining the entire weekend......
which gave us some pretty mild afternoons!

We had started feeling like hermits......
and it doesn't help when the rain pounds...
the kids are bored...
the husband is gone...
and constant doctors appointments!
That is called NO FUN!

So ......
Saturday morning when I told the kids we were going to get in the sunshine and go to Seattle....
their response from both was the same, and sorta sad....

"ahhhh.....mom, why do we have to go to Children's again?!?!?!"

yeah..they equate Seattle and hospital all in one equation......

so how could going to Seattle possibly be fun????

Pike Place Market!!!! 

The kids loved it!

We had a van-load...

my crew, along with my mom, Katlelyn and Fred.

The place was packed, but I guess with the Olympics being so close many are coming through Seattle.

So you had the tourisits, and locals....and like I said the weather has been amazing....

and for "Seattle-ites" this calls for shorts, flip-flops...not me...just the crazies who think the sun = summer....

the grey skies makes us a little coo-key out here!!!!

So we walked around and got some goodies.....

Hailey was scared of the crabs in the tank that you couldn't see in this pic

Fred got the kids strawberry lemonades, chicken skewers, sausage skewers, pickles

and that was just a "snack!"

 

Anyone that knows Hunter, knows he is not a *cake* kinda kid but....

a **cheesecake** kinda kid, so.....

they have a new hot-spot that Hunter would not let me leave without purchase..

that case they are standing in front of was loaded with all different types of individual mini cheesecakes..

I wish I took a pic before we ate them that night...they were quite amazing, but...

I said "mini" little round babies, at $4 a pop...and we got a 4-pack....

maybe if you click the pic you can see how mini...

but it put a super huge smile on my boys face..

and that is priceless!!!!!

After the market we walked down to the waterfront...

 

and we set up camp at Steamers for a late lunch.....

My kind of Saturday!

and the kids commented on the way home

(well Hunter commented and Hailey gave him an amen!)

"I didn't think going to Seattle was going to be a fun day mom,

but that was a great, fun day!"

Sunday my mom took Hudson for me so I could take the kids to church.

The kids and I serve every other Sunday as greeters, so we had an early start.

I had plans carved out for Sunday way ahead of time, with a friend and her 2 kids.

(Her husband is a pilot so it works well for our husband-less weekends)

I had planned to have her son over for a playdate and then her and her daughter would come over

after nap time and we would do dinner at my house. Thought it would be a nice relaxing evening.

Boy was I wrong...

through church I noticed my cell phone kept going off, on vibrate thankfully, but it was my mom...

and she was relentlessly trying to get a hold of me.

At first I though it might be a "Hudson" issue, but figured I would get a text most likely too....

and I didn't. So felt comfortable waiting until church was over to find out what was going on.

Called my mom and found out my Aunt and Uncle, from Portland, had been in town and were stopping in for dinner on their way back to Portland....AND... my brother's flight got cancelled (pilot) due to a snow storm in Reno and he was being re-routed through Seattle....so now my quiet dinner with my girlfriend and kids became a family gathering unplanned...at my house!!! 

It was all good...kids were thrilled with friends over...

and our suprise family dinner!

(no, I don't completely stink at taking pics, nobody would scootch in and I gave up!)

Marylynn was a sport hanging with my crazy family. 

(I know she thinks we are crazy, but that's how we roll!)

Anyways, she has been a great support with Hudson and she has been the one who got me my job at the church, and my brother has officially labeled her as my "pimp" because she just got me another temp job that was too good to pass up...so I will be working hard this week and next! :)

She also has a daughter that is about 4 months older than Hudson. We have talked, she knows, how hard it used to be for me to even be around her beautiful baby. That's just it though, it was when she was a baby it killed me, to see her so vibrant, doing what Hudson should be doing.

Today, oddly, it is not nearly as painful......

She seems so "big"

and to me Hudson is still a baby.....

and yet they are only 4 months apart...mind blowing really.

I guess when I think about it..

it saddens me...

because I see the joy Hailey has in this little girl...

and I see all that Hudson isn't doing...

and I see seizures

while all the kids run around and play.

So although it saddens me

it just doesn't seem like age is even relatable anymore, at this point....

because Hudson is still a baby....

and she is a big girl.

It was a sweet yet strange moment.....

Hudson has a cry-out seizure

Alexa walks over and asks whats wrong?

and I explain he has an owie that hurts real bad and we can't get rid of it...

and she just looked and watched him...so sadly

and sympathetically.

Marlylynn and I had envisioned our little ones doing pre-school together, like our boys did, 

and being good friends.....and instead ....here, last night..... her daughter watches him seize....

definitely not what we envisioned.

Enough sadness....because it was a great weekend...and I have gotten to a place where I actually don't avoid my friend who has a healthy 3 year old (in the baby days I sorta did)...her friendship and love mean way more than that, and I am grateful Alexa is healthy and they don't know this pain I know.

I would just rather be a part of that club, not the one I am in. 

And that is just me.... being totally honest.

We will be starting the drug to cut down secretions. 

Hoping it helps...he was very drooly today, which is not the norm for him.

He has also been having a very hard tonic seizure that ends up in a cluster of spasms which makes his breathing and tongue do weird things and I have noticed this certain seizure combo results in Hudson throwing-up...I think it is totally seizure related as he doesn't throw up all day except after this one type of seizure. So that was in my bed this morning and also happened Sat. and Sun morning....sort of a random thing.

Because of my temp job our Dr. Saneto (nuero) apt. was pushed out 2 weeks further in March as opposed to next Tuesday, which I think will work better because he will then be on the full titrate of Vimpat.

 After Sunday's seizure, throwing up and bath.

:(

I HATE SEIZURES....just had to get that off my chest...HATE 'EM!!!!

leaving you all with some random pics from last week..........

My cute little "St. Valentine" in his lead part!

Hunter asked his Nanna to be the "Royal Reader" for his celebrated 1/2 birthday at school.

(He has as summer b-day)

Pulmonary and sushi

Another long day yesterday.
Any day, for me, ending in sushi at Blue C....well that's a good ending to a crappy day!

My day progressively got worse on Tuesday.
We all know how it started...well those who continued reading my wining do.

Once I got to Children's, got Hunter and Hailey in the sibling room, the ball started rolling with our pulmonary appointment.
Honestly, wasn't feeling all that great about the appointment.
The doctor was nice. We reviewed Hudson, the history, symptoms, answered the usual questions.

Dr. Carter was mainly concerned with the chest x-ray. Which, in a way, took me by surprise...because the blood work came back o.k......but it didn't seem like it was enough for the doc.
He basically said before we could tackle the problem at hand we need to rule out the main concern...are we dealing with a bad infection, or something else? And when I say "something else" I am pretty sure those were his exact words. He never put any "label" on what we might be dealing with, other than something else and if so, that will be a whole other issue to tackle.... I knew he knew, just didn't want to say it.

We talked about secretions, swallowing, coughing, sleeping...I will touch on those more in a bit.

He sent us to radiology to have yet another chest x-ray...to see if there were any changes. Instantly I told him that I couldn't sit at home and wait for results...I needed him to read and inform of what the x-ray was now showing. He agreed, although he informed me he would only be in clinic until 3 and would have to have someone else read and interpret it for me.
That was fine with me...just wasn't leaving the hospital with the unknown playing games in my mind...couldn't handle it.
It took about 45 minutes before we got in to do the x-ray. I was getting impatient. The x-ray took a whole 15 minutes, I am guessing. By this point my 2 hour max was up for the sibling room...in fact we were well over the 2 hour mark, and I had to pick up Hunter and Hailey and bring them back up with me to the clinic.

My dramatic Hunter thought I was never coming back for them...and was wondering where I had been.Hailey was to concerned with where all her art work was to even notice or care that I was standing there.
With 2 tired and whiny kids, I dragged them with me, met my mom, and we went to pulmonary,
By this hour it was like ghost town there...no one was around...and when we inquired about getting the results, nobody knew anything.
We ended up waiting about an hour, and then my mom couldn't take it anymore...she searched the clinic for someone to help us.
Finally a doctor came in. He was sort of wishy-washy...didn't really know the history of Hudson, so it was a little uneasy. Bottom line...he felt like the x-ray showed improvement. He mentioned the lymph node that was swollen looked like it had shrunk...but then he mentioned this may not have been a lymph node at all! Then he also mentioned the possibility of tuberculosis .....but he sent us away assuring us the x-ray improved and there was nothing to worry about, and this was not a case of tuberculosis.
All of this between the hours of 1:30 and 5:30...that is when we finally left Children's!

Hungry, tired...but happy...my mom took all of us for sushi!
That was a serious dinner bill...my kids are serious sushi eaters..well Hunter is. He eats the raw stuff. Hailey is a crack up...california rolls..plates of them, mind you...bowl of rice, chicken terriyaki, 2 plates of Edaname beans... she was rolling out of the joint. Me...I am all about the sushi...I could live on it...my favorite!
So, a cruddy day, ended in a glorious sushi feast!

When I got home there was a message from Dr. Carter....which impressed me....because I felt like our time was somewhat abruptly ended. The fact that he called and followed through with us...was impressive.
He said he looked at the x-ray, wanted to make sure I got the correct interpretation, and said he saw a nice improvement over the last week. He said he would call me and talk further Wednesday evening (tonight), which he did, and we discussed things further.

He said the enlarged lymph node had shrunk, if it was...he used the "C" word...CANCER...it would not have shrunk with a round of antibiotics. That was the first time cancer was actually stated to me as the main concern. (other than the lymphoma mentioned the first time)
I guess it is easier to say if it is ruled out. He said since we now know for sure this in not cancer, and just a bad infection, we can move on to the chronic cough, congestion.

Obviously a big part, is the fact he has a bad infection, which he prescribed an additional 10 days of antibiotics, after the first 10 days.
He mentioned his lungs are clear and getting good air, so this disease thus far has not affected his lungs.
He mentioned Hudson has a strong cough and that he feels Hudson is aware when he swallows and his secretions go down the wrong airway, resulting in a cough, which is appropriate...that is what we do if we swallow wrong. So he says it is good Hudson is aware of this and he has this strong cough because it is keeping those secretions from seeping down into his lungs..a good thing.
Hudson's rattly, ghunky sound mainly comes from the upper chest/airways. The doc feels his swallow has weakend over the last 6 months, and many things play into this....seizures, meds, sickness....so if any of these changes or improves, his swallow could improve, but as things have gotten worse his swallow has gotten worse.
The stinky part is...there is really nothing you can do for the swallow. I am sure if Hudson didn't seize or wasn't on a full stock pharmacy load of drugs...things could change for the better...but we are dealing with endless seizures, the most anti-epileptic drugs taken at one time, and compounding viruses....
of course things are going to go down hill!

The doc informed me he emailed Dr.S (neuro/mito) and would like to try Robinole (sp?) a drug that dries out the secretions, so Hudson wouldn't have to cope with so much and hopefully it would decrease the coughing, which would help with expending all his energy in coughing and secretions. The flip side is that it can make the secretions seem too thick and cause more problems in return.
We agreed if we get the thumbs up from Dr. S, we will start Hudson at a very low dose and see how it affects him. If things improve, we can always increase.

I asked about oral feeds. He definitely sounds better, not perfect, but much better, and my thoughts were to feed him with baby food again if he continues on the upswing.
His thoughts were no oral feeds...lets wait until we are done with the 2nd round of anti-biotics , see how he sounds, get a base line, then talk about oral feeds. Makes sense to me.

Another emotionally exhausting week. Seriously I am fried!!!!

A highlight...

My oldest, Hunter, was performing with his class in a skit for school chapel today, and he had the lead part....he played St. Valentine! This morning he told me he was nervous, his knees were shaking (his words), he was worried he may forget his cue when it was his turn to speak. He didn't have school Monday or Tuesday and chapel is first thing Wednesday mornings...so I could totally understand why he was uneasy.
He did absolutely fabulous...acted out his parts as it was narrated, remembered his lines....super cute and I was a super proud mamma!!! He is really blossoming!

Hudson even did well....it crossed my mind...because timing is never all that good when it comes to stuff like this....
I envisioned Hudson going into a scream/cry-out tonic seizure as Hunter was delivering his lines... and the all the rows of school kids in front of us and parents turning our way to see the seizing brother of Hunter's.....
thank God it didn't happen...
I got the whole thing taped, seizure free....
 Hudson saved the cry-out seizure for the moment we reached the car in the school parking lot...

On the seizure front...bad...have seen no change as of yet, just BAD!
This evoked me to email Shawna (Cody's mom) and find out how long it took to see a change for the better. She said a few weeks but their seizure free streak was over and Cody had been having 3-5 minute seizures as of recently...gggrrrrr....

My 2 main gripes....SEIZURES and the CRONIC COUGH.....
but if I had to choose with only one wish....
it would be a no-brainer.....
to say goodbye to the seizure monster once and for all!!!!!!!

Thanks for continued prayers and encouragement.

will we ever catch a break?

I wonder....
it seems like there is always something...
and I am not looking for huge breaks at this point...
just little ones...and those even seem impossible.

If you don't care to hear me whine...
feel free  to stop reading...
move on.

The kids have no school today (Tuesday) or yesterday.
Monday mornings Hudson has PT, which I got all 3 kids out the door and we went to Hudson's therapy.
This morning I just wanted to sleep in...
sleeping in for me means not having to get up, not having to rush, not having to contend with anything before 8:30ish.....seems like it would be possible...not unreasonable to look forward to a morning like that....right?

So why is it....
at 6:45 a.m. I hear the crib moving...I turn on the monitor and Hudson is having jack-knife-to-the-side spasms all clustered up one after another.
why is it...
at 7:30 the dog decides to bark...she is almost 13...she has *different* barks...this was the "I have to go outside potty" bark,  rarely does she do this...she doesn't typically have accidents...but she is almost 13!
why is it...
after I get back into bed after letting the dog out, getting reflux med in Hudson, going back downstairs to let the dog in...because now she is doing the "I am an inside dog, let me in the house now!" bark...
my phone rings
why is it....
I go to feed Hudson, now 8:30, and as I am feeding him he wakes and goes into a huge tonic seizure...
then throws up the feed.
and I just washed and changed the crib linens yesterday after he threw up the night before and was saturated.
why is it...
Hudson is throwing up when he shouldn't be able to...remember we just got word his Nissin is in tact...I can only think it is seizure related.
why is it...
I find myself stripping his crib once again, stripping Hudson and running a bath, and my 5 year old says "Mommy, can I have a bath too?"
and I say...
"Hailey...mommy has had NO coffee, can I just have some coffee first, before running a bath for you too?"
and Hailey says...
"I know how you feel mommy...I have had no food or drink either, so pleeease give me a bath?"
and I say..
"O.k., let me get Hudson dressed and in my bed (at this point he is falling asleep in the tub from his seizure-riddled morning) and I will give you a bath a too. (in my mind....i just need caffeine!!!)
why is it...
Hudson has the "shakes" after the hard tonic seizures...I have seen this happen a few times before...it is as if he is shivering cold.
why is it...
the one morning I was looking for some R&R, it is the furthest thing from restful.

At 9:30...
I got my caffeine...but then I got a phone call..and my coffee turned cold...and now I am past even wanting a cup of coffee.

I don't want my day to be painted this way...
we have the Pulmonary apt. at 1:30...
will things turn around...
sometimes it seems impossible...

to catch a break.

Thoughts for today...

                                              

Is it just me, or does Valentines day seem silly? 

Not sure if I am just all grown up in my thinking, or if it's because I had to drive my valentine to the airport this morning....

I did love it as a kid

as a girl..I always wondered what boy secretly liked me, and if I would get a "mystery" valentine :)

It is a fun holiday...for kids.

I am one who would just rather be loved and show love all through the year...

in little ways....

gifts not needed or important.

I don't need a holiday to tell me I am loved....or not!
Just a weird day to me. 
(A funny...today in a store I heard someone say to the check out gal..."Happy single awareness day!")

My husband is one that doesn't bat an eye to spend $80 on roses

or any extravagant gift....

he is just like that.

I am practical...

the flowers will die within a week...

I don't need fancy chocolates to travel down and stick to my thighs...

For me....it's the  little things that mean so much.....

On Thursday I had mentioned we had our meeting for Hudson's transition when Hudson turns 3.

Paul made a comment.

It meant the world...

I could tell he was choking back tears through this meeting. He is not "exposed" to the therapists, and all the formalities and hoops I jump. He caught a glimpse of what I do on a daily basis as I sat there advocating for Hudson and his needs. 

Paul chimed in at one point and said ....

"Before Hudson, I handled all the illnesses in our family. Debbie never did well when the kids were throwing-up or got hurt, the kids always came to me.(I always claimed to be medically challenged!) I am so proud and amazed how she handles everything with Hudson today........ she amazes me."

Mind you, he was looking at me when he said this.....

and I noticed his eyes were holding back the tears. 

In that moment.......

I could see he gets my role as Hudson's mother.

It was a moment I have never really experienced in the last almost 3 years.

It happened again this morning. Except this time I was teary eyed.

Paul took me by surprise again.

I was telling him I felt bad because as the kids were opening their Valentine treats....

I had nothing to give to Hudson...

and obviously he knows nothing of today.

Paul said...

"He has everything he needs, you don't need to buy him anything"

I said...

"what do you mean?"

P......

"He's got you.....for his mom.....that is the very best.....that is all he needs."

These were my gifts of love. These are things that make me feel loved. 

I pour my heart into my kids.

My husband knows it. 

What greater gift than my husband to recognize the deep love I carry for our kids.

It is also a deep sense of respect...which is important to me.

We had our date last night.....

went to dinner and a movie.....we saw Valentine.

We enjoy our time together more now than we have in the past 3 years.

We held hands during the entire movie. We looked in each others eyes during the movie...with little kisses here and there. Things we haven't done in a long time.

Paul and I have been together since 1992. Married in 1996. 

I always say he got my best years....I was a young 20 years old when we met, and he has had me ever since!

When you have a sick child, statistically speaking, it has a high rate of tearing marriages apart.

It is stressful beyond belief....

and for Paul and I, we learned we deal with crises very differently.

What I need...he doesn't need...what he needs...I can't handle.....

I don't think we ever knew this until Hudson came along.

I have admired those who have the greatest source of strength through their spouse when dealt the cards of a sick child. I think having faith in God and having a strong marriage are the 2 vital necessities in walking  through such a life changing event and surviving.

We are growing though it....still together....still learning about each other....even after 18 years. I don't think we will ever totally evolve into this couple that doesn't have to work at things.

Through it all...were still together...working at it.

This season of being apart....it feels like their is a sense of appreciation and respect that we have been missing.

We take the little time we have and truly enjoy each other, talk, laugh...not focusing on the hardships...just on each other. 

We miss each other...

we appreciate one another.

Sometimes you have to learn the hard way.

Hailey teared up when we were dropping him off at the airport...

which made me loose it....and behind Pauls sunglasses....

I think he was tearing up too. 

The "man of steel" that my husband is....tells me he thinks of it as him having to be on a business trip, that he will be home soon, that this is his thinking to make it "o.k." and bearable in his mind.

I do know this is not easy on him.

As we drove away....

I told the kids what I truly believe to be true. This is a season in our lives. It will not be like this forever. 

For now, this is what we need to do.

I believe in God's providence, he is working this to strengthen our marriage, to help our children see a husband and wife love each other, and respect each other. 

I was sad today. Tonight...I am doing much better than I thought. My husband is not here for Valentines day....

but I have felt really loved the last few days while he was here....

and I am holding on to that.

*******

Some pics ............

I walked into the living room to fin Hudson and Lexus "bonding"....btw...Lexus loves that bear Hudson lays on and I think she was trying to get on it with him!

Hunter's class was asked to bring in their own decorated Valentine holders and his teacher would be giving awards out for most creative, etc. Hunter won 1st prize for "most realistic" His was a skate park.

HAILEY LOST HER 1ST TOOTH ON FRIDAY!!!!!!!!!!!!!!!!!!

 

Our quick morning Valentines for the kids before heading to the airport

Slight Improvement

I wish I could say HUGE improvement....

however, the last 2 nights I have not been woken by his coughing...improvement.
I am suctioning, but not as much...improvement.
He is coughing but not bringing as much junk up with his cough...improvment.

I guess it will take longer than 5 days to rid a 6+ month cough...but I am impatient..want him to be
rid of it.

I did get a call on Tuesday from Dr. Carter's office on Tuesday...which freaked me out..in the moment.
The gal asked that I come down as she had a message from Dr. Carter to get me in at 1:30 p.m.
You can imgaine the thoughts that raced through my head....
He found something else on the xray...something didn't jive..
the craziness and worry ended when she called me back and said the appointment was meant for NEXT Tuesday!
So, the doc got us in much earlier than the end of March...I am so grateful. I also found comfort knowing we weren't being rushed back to the hospital this week, as I think he looked at those x-rays on Monday.

I am really looking forward to this appointment. I have noticed his breathing is very coarse, especially when sleeping. I thought maybe it was from the irritation of the tube being place over and over again, but he still sounds coarse...even during the day. I think I will video record it...just in case he is sounding "good" the day we go in...seems to always work like that!

Seizures are the same...maybe not as frequent...kind of like the cough...but the same. Tonics, lots yesterday, less clusters, but still seeing some. We are on a 1/2 of a 50mg Vimpat tab at night, then on Monday he will go up to another 1/2 ....giving him the full 50 mg (1/2 a.m. 1/2 p.m)....for 7 days and then we continue titrating up like that until he is taking 2 tabs a day.

What an answered prayer if this would work...seizure relief seems impossible...I just have hard time getting hopeful when it come to seizures...I can only continue praying....
praying for something that seems unattainable.

For God ....nothing is unattainable...all a matter of handing it over...trust.

We had Hudson's first meeting with the Public School and Birth to 3 program this week. Hudson turns 3 in May. I can hardly believe it. He is such a baby.

It went well. He had a huge tonic seizure right in fron of the gal. I was sort of happy. She saw how it knocked the life out of him afterwards. Good timing on Hudson's part.
There will be no apparent fight to get Hudson home based therapy once he is 3...she completely was on board with getting that need met once we are at that point.

An answered prayer. :)

Paul came home Wednesday night.

:) :) :) Big smiles here...Hunter, Hailey and mommy too!
We are so happy to have each other. Feels so good.
Hailey and Daddy had a Valentine breakfast at school yesterday. He has been picking them up and taking
them to school (nice break for me)
doing homework, and just having the extra pair of hands...ahhh....I appreciate his presence so much more now!
Today he took Hailey out on a lunch date.)she has no school on Friday's)
It is poring rain here so they  went to Panera and had soup and bread and went to ...Justice for Girls...and Daddy let her get a little something. She is eating her Daddy up!

Tomorrow night we are going out for dinner...to celebrate Valentines Day. The kids will be with their Nanna.
Paul leaves Sunday. :(
He is off to NY Monday....

We will have a busy week. The kids don't have school Mon/Tues so we have plans with friends on Monday and Tuesday is our big appointment.

I am desperate for your prayers....

*seizure control with Vimpat
* appointment Tuesday, and direction in this gunky, coughing saga. (NO BAD NEWS!)

Hope your weekend is filled with fun and love!

a ph probe diagnosis without a ph probe.....

makes no sense, right? I am one spent mamma, in fact, I am still shaking from our day. It has been one unbelievable day.
Started this morning as planned.
First I will say, last night was rough. I didn't get to bed until 12:30a.m. and Hudson was up coughing and choking  late into the night. I was busy packing lunches, hospital bags, printing med lists, etc. So,  I am running on very little sleep as I woke up at 4:45 a.m. to start our day planned to do the 24 hour probe.

Once we got checked in I  showed the nurse the letter I recieved from insurance on Saturday. She was wonderful...started making phone calls, documenting names and numbers of people she spoke with. She even talked to our GI doc, anyways, they entertained the idea of sending us home and doing it another time, when we could get the approval prior to coming in, but she read my face, I wanted this over with. So, we proceeded due to the fact that this would be billed as observation, and not a 24 hour in patient admittance. The letter stated observation was approved.
After we tackled that issue, that put us behind about an hour, she started going over the PH Probe process and protocal. It is suppose to take 15 minutes to place the probe from his nose and thread it down thorough his esophagus into above the stomach area to measure the amount of acid coming up through out the day. I was to document if Hudson was sitting, laying flat, seizures that cause him mucous and coughing etc, meds, etc. Seemed simple, although there were arm restraints to avoid him pulling the probe out, if needed, which I knew would stress him out.
So, once I agreed I understood  how this works, she lubes the tip of the probe and starts threading down his nose. Hudson is thrashing about like the strong fighting soldier he is, and she can't get it down. She tries several times and keeps telling me she feels like something is blocking her from being able to thread it down. When she thinks she has it, Hudson does one of his lovely coughs, loaded with mucous and now blood, and it is gurgling in the back of his throat. I grab the suction catheter and go at it...guess what she sees...the tip of the tube coiled in the back of his throat. At this point she is thinking maybe he is coughing so hard, or the suction catheter is tugging  at the probe and that is what is causing it to come up. At one point  she thought it was in, but our GI doc wanted a chest xray to make sure, because the acid levels were not going down on the machine, as it should be once in the stomach area. So a mobile xray machine came down, did it's thing and we waited about 10 minutes for the results.

In the meantime Hudson is sweaty, red faced, had a horrific tonic seizure that went into a large cluster of spasms. The nurse gave him Oxygen and we were both getting worried...he was working so hard fighting them, coughing and choking and the fatigue from it all  was resulting in huge seizures.

I must say, this nurse was extremely sweet. She places 90% of the probes and said she has never had this problem where is doesn't got straight down. I was feeling uneasy.

The xray confirmed it was not in place...it wasn't even really threading down the esophogus. It looked like it was bunching up at a certain point.

Another nurse came in and tried. Couldn't get it. So the "veteran" nurse called our GI doc.

Hudson's GI doc and the nurse kept apologizing. Clearly Hudson had had enough. Dr. Burpee told me that if  after he tried and couldn't get it, we would forget it. I was fine with that, except, I wasn't o.k. waiting until the end of March to find out what is causing all of this crud. I asked if he would contact Dr, Carter and see if while we were there today if someone in Pulmonology could take a look at him. He agreed and said he would email Dr. Carter and cc Dr. Saneto on it. I thanked him.

He started threading it down the nose, placed it, taped it down once again, called for a chest xray, and we waited.....and waited. The nurse finally said she was going to see what was going on. She came back and said Dr. Burpee was consulting with radiology on the xray, and trying to get a hold of Dr. Carter.

At this point, I knew something wasn't right. The nurse said to me that she thinks the probe still had not gotten placed correctly and that the probe was not going to happen.

When Dr, Burpee came in, I felt something bigger going on. He said the probe did not work again. He showed me this 2nd xray. I saw how it was bunching up, in fact it didn't even reach the end of the esophagus.

He then pointed out an area further down on the xray. He said in trying to do the PH probe we very likely have discovered why Hudson has his cough/mucous. He compared Hudson's xray taken in December to the ones taken today and pointed out how below the esophagus there is grey area that is much wider and larger around Hudson's lymph nodes. He said it is likely the lymph nodes are unable to drain because there is this blockage, which is also blocking the probe from going down.

My heart started racing as he told me he wanted to run some blood tests. I asked what he was looking for. He said most likey some sort of infection that will need a very strong antibiotic. I asked if he was testing for anything else and he said he didn't really want to say, but yes...Lymphoma.

"Really, Lymphoma?" I said....my hand was over my mouth...I felt sick to my stomach...Lymphoma????

I know lymphoma all too well....someone very close to me in my family had lymphoma....I knew exactly what that was. Things raced through my head...how could this little guy handle treatment of cancer on top of mito? I just couldn't fathom it!

Dr. Burpee assured me that this was not on the top of the list of possiblities...more on the bottom of the list....but he felt it was a possiblility because of the location of this mass. I was told he would call me one way or another when the blood work came in...in  the meantime we could go home. He said if it was looking like Lymphoma he would have us come back through the E.R. But he assured me he didn't think it would be and not to worry.
Oh, by the look, he knew I was worried.
My mom came to the hospital right after he had this talk with me. I asked him to show her the xrays and tell her what he told me. I think she was bit suprised to hear this too.
He told me he called the Pulmonologist, Dr. Carter and he was in his car on his way to the Bellevue clinic. He was going to look at the xray when he got to the clinic. He also said he would get us in asap...we would not have to wait until March.


After we packed up, got Hudson's first feed in it was already 12:30. I couldn't believe we spent all morning trying to get this stupid tube down his throat. He ended up having 2 huge seizures after all was said and done. He looked horrible. He was exhausted from the fight. It was now time to pick up meds, go home and wait for the call. He told me if I didn't hear anything by 5 p.m. I could call and have him paged.


We had to pick up 3 prescriptiions. Dr. Burpee prescribed the antibiotic to get Hudson going on that, in hopes that was what he needed.
I felt like I was going to come undone at the seams. I can keep it together and appear strong when in the midst of doc and nurses...but as I walked to the Pharmacy...I began to unravel.


Unbelieveably, the Vimpat was not filled right and they needed a new script from Dr. saneto. We had to wait another hour for that. Thank God my mom was with me. I can't imagine sitting there alone after being told there is a possibility this 6 month cough may be due to Lymphoma. My mom told me to go home and she would wait for the scripts, but I told her no....I told her I felt like I needed to stay....what if they got blood work back and Hudson had to get admitted? I felt numb, and shakey. Couldn't drive.


We just sat and talked and my mom was trying to convince me this was going to be infection related, but deep down we both felt sick about what we heard.
We had been there for about 30 min. when all of the sudden we see Dr. Burpee walking toward us...wasn't expecting to see him so didn't have time to process what he might have to tell us. He said he tried calling my cell phone but it went to voice mail so he thought he would check if we were still in the hospital....he found us...blood work came back and looked good...GOOD! Music to my ears.....praise God...praise God!


His white blood cells were elevated to 17 and he said 15 is normal, but with an infection this isn't uncommon.




SO..........a ph probe that never happens leads to a really, really bad infection. The plan is to do another chest xray after we are done with this 10 day antibiotic. We should see improvement within 24 hours. I BETTER see improvement.....I think I will loose it if I don't.


I can't believe this day. Scary and good all in one. My nerves are shot. I am so thankful that our GI doc came looking for ua and that I didn't have to sit and wait and wonder utnil 5 pm tonight.


Please pray for Hudson.....it is clearly not reflux....I just need this antibiotic to work, and clear the gunk.
This has to be our answer......praying for no more suprises and certainly no more scares!


We are home tonight....I got home in time to pick up the kids from school...they were suprised to see me and Huds.
What a day....what a day!

Weekend News.....and Monday.

Why is it I always miss the most important phone calls?

I didn't realize until 4:45 p.m. on Friday that my phone was flashing that there was a new voice mail. I use my cell way more than my home and I just don't pay attention all the time! I figure if you can't get me at home most will try me on my cell. Not this time. It was Pam....the mito nurse....responding to my email from earlier in the week.
Dr. S now wants to add a new seizure drug alone with all the others...here it is...this is me emailing him after missing Pam as she had already left for the weekend.


Dr. Saneto,

I received a message from Pam this evening stating you would like to start a new drug for Hudson, and she was going to call it in to our local pharmacy.

I called Olympic Pharmacy and they said there was nothing in fax or on voice mail for Hudson.
If it was not called into Olympic Pharmacy today, can you have it called in to the Whale Pharmacy at Children's?
Hudson and I will be there for a 24 hour PH Probe first thing Monday morning.

Do you want me to continue with the Lamictal as well, or am I adding this along with the others...Lamictal, Zonegram, and Depakote?


Not sure if it is possible, but the seizures seem worse since he has been on the Lamictal.
 Then again, he is really struggling with all of this mucous, coughing and congestion, which I know can affect the seizures too.

What are the side effects I can expect with this new drug?

Thanks for your time,

Debbie 

Dear Mrs. Austin,

The new drug is Vimpat. I just fax’d a “non-formulary” form to the Whale Pharmacy, so you would pick it up there. Yes, just an Add-on to what he is taking already. Within 2 months we will know if it works and either slim down one of the other meds and if it does not, then wean off the Vimpat.

Regards,

Russ

Well, from what Pam said in her meassge, they have one other patient that is on it and is drug resitant like Hudson. He has had some 5 day stretches of no seizures, and they are very encouraged by what they are seeing.

I had a gut feeling this kiddo was Cody, so I emailed Shawna and sure enough she emailed me back and said she had just emailed Pam that Cody went 5 days without a siezure! She also said she has not seen any horrific side affects. 

I can't get excited about this. I would like to. I can't.

Too many times I have gotten my hopes up, only to come crashing down in disappointment. 

I can only take what I see today...a seizure saturated, mucous-coughing, floppy, tired baby boy, fighting for sheer existence. I pray for better tomorrow's...I live only in the moment....I have learned.

So that was my Friday. Calls. Emails. Kicking myself in the a**, for not noticing that message earlier in the day. 

Saturday was actually a great day. Unplanned fun! The sun was actually shining here in the great northwest...it feels like a lifetime the kids and I have been able to spend a day outdoors...with Hudson...it was actually really mild temps. We took the kids to a school park wheer they rode bikes and raczors and played on the playground. 

My friend and I even got to walk a few laps around the track...it felt great! Hudson did fabulous. I think the fresh air did him a lot of good. His congestion seemed better through the day. We ended up staying for dinner, the boys put on a little Wii Rock Band Concert for us mommies, which was just about the cutest thing EVER,and we got to talk, eat, and drink wine...a great day! (Thanks ML!) 

I always say weekend are the roughset for me. I feel Pauls absence the most then. Weekdays I am insanely busy, I don't feel it as much, other than the lack of helping hands...being one parent to 3 kids is exhausting!!!!!!

So what could have been a depressing Saturday turned out to be super fun! It helps my friends husband is a pilot, so she has many weekends alone too! 

Last year I had a gathering for Superbowl...I just like the food and an excuse to party :) not so much a football fan. Wasn't in the mood for hosting, being husband-less and all, and me nor my mom had any invites, so we hung out together and ate "super-bowl food" minus football....oh but I did see The WHO...loved them when I was in college....so I drank wine, ate wings, sliders and cranked the music up and sang with The Who...my kids think I am nuts!

My mom took the kids this afternoon and I hit Costco, Trader Joes, QFC and Harbor Greens. We had no food and since Paul is coming home I knew I had better stock up as I will be doing lots of cooking. So it was nice to do some kid-free shopping.

Monday....I have to be at Children's at 7 a.m. Hudson and I will be leaving around 6a.m.

This is just my luck....

Saturday I got a letter from Insurance stating they are not approving Hudson's in-patient stay for the PH Probe....which is TOMORROW!!!! I am floored, seriously....can't believe it. 

I am taking my letter with me because I can not afford to cover this if insurance doesn't and I need to know how this is to be handled. So we will see...I may be coming home tomorrow....not sure how this will play out.

It sounded as if it may be covered if he was observed, but not admitted. 

Praying that we can get the "ph" info either way to rule out reflux. I do not want to go through the hassle of being there and turning around and come home.

I also will be starting our new seizure drug tomorrow. 

Lots to pray for...lots.

We also meet with the school district in our home this week(Thurs) and I am praying they will understand why Hudson needs home based therapy.

Lots going on. Lots of prayers needed this week. (did I say that already?)

Daddy comes home too..so we are praying for safe travels for him....can't wait!

Look for updates on this PH saga....insurance is so frustrating! 

 

despite the pain....I have grown

Mothers Day 2008.....

I was invited to a luncheon at someones house I had never met. Our hearts had met prior.....about 6 months prior, when my little 4 month old started seizing.
 Some of you may follow her blog, Crazy for Cody.
This world of I.S. was all new to me, and the pain of the unknown, and a very sick child made me tremble.
Shawna had gathered myself, and 3 other I.S. mommies together, and she called it a gathering of "super-mom's"
2/4 of us moms were newer to this world of I.S. I was one of the "newbies"
Shawna had been in contact with the others much longer than with me.

It was a luncheon I will never forget.
I made a connection to other mom's going through this painful journey, I got to hear other stories, and heard how others cope.
I remember when it was my turn and I started trying to form words to talk about Hudson ...
I remember my eyes filling with tears...I tried to choke them back...it seemed impossible
In my mind I was the only one undone..so new to it all...a mess...a wreck!
I was able to talk about Hudson...through my tears, and through the pain...it was hard.
The other "newbie" whose son is only a few months younger than Hudson, was totally together.
Not a tear, nails done, tan, cute clothes...works full time...she blew me away at the time.

I realize now, we all cope differently.

Me....an emotional wreck...don't look pretty, can't make it to the gym, can't take care of me...cuz I was and still am engrossed with my sick child.

I wondered though...in that meeting...if I would ever be at a place where I wouldn't well up with tears when having to explain Hudson. Would I ever be like those other moms, who could talk about their seizure saturated kids without falling apart? (at least on the "outside")

That first year and half (pretty much until recently) I couldn't bare to *look* at a kiddo that was around Hudson's age.
I felt envious....
I felt anger...
I felt self-pity
and pity for Hudson.

Other kids.....other *healthy* kids.......has been a huge open wound for me.
It is was so unbearable to see kids at church, friends babies, grocery store babies, target babies....ok......
ANY baby around Hudson's age.......

and not feel all those things above!

I now know I am slowly growing though.........

it still can be painful, and I still break-down in tears, more often  than not, but it is usually when I am alone.....with Hudson.
I have noticed though....I am able to talk to strangers and acquaintances about him and I keep it together.
I have even explained our story and have done so without a crackle in my voice....I think.

The big one though....that recently I faced.....was at work this week.

We had a baby that was probably a year old. A boy. It was a huge reality check of course.....
the eye contact
the movement
the squealing, crawling, playing....

I look at Hudson...
sitting in his chair.
seizure-saturated stare on his face
breathing his gurgle-y breaths

I can't help but feel sorry for him.

But I know a year ago I could have never done this job. It would seem cruel.......
reality would slap me over and over again in the face and I really don't think I could have gone to do such a job and not sit and cry the entire time I was there.

I have grown.

I fed this baby two jars of baby food.

the anticipation of the spoon
the satisfaction
the quick bites
the quick swallow
2 jars of baby food down in 10 minutes!

I fed this baby, while my baby sat staring off...weak and tired.

I finally found I wasn't angry....

at this baby for being what mine is not
tears did not once well in my eye

Pain I believe is felt in stages.
I am not sure at what stage I am in.

I would never wish seizures or mito or any illness on any baby...I hope that is clear

But....

I also never imagined these things would have been *my* babies sentencing.

Somehow....by the grace of God....I am growing through it.

This week I recognized that.


********************

I found Shawna's post from our Mommy's lunch here

The little things that keep me going....

On Sunday...being in my "funk"- I never get out of my pajama's. no makeup. no shower. scary...i know!
Hailey had spent the night at a friends and didn't come home til the evening. So, it was me and my 2 boys, doing pretty much nothing all day.

Hunter is in this Michael Jackson phase, which is making me feel really old, because I loved MJ as a kid, and had all the books and posters on my walls and really thought one day he would find.................
......ME! (this of course back in the 80's when he still looked cute..in my book!)

So here my 8 year old thinks he is such a cool dancer, loves the songs.....and really.... MJ was an amazing entertainer, no doubt!

Hunter and I watched This is It on Sunday. It took me away..I loved it, the music, the dancing, the short films............ and he actually seemed like a pretty nice guy...he never knew this footage was going to be turned into a movie...and he seemed genuinely kind.

So.........after the movie Hunter said.......

"Wow, Mom he sure was a great singer  and dancer!"

me...
"Yeah, God gave him amazing gifts and he discovered them and spent his life using his gifts of dance and song to entertain people and make people happy. God gives all of us special gifts, we have to uncover what it is God has given us and use it for his glory"

H...
  " I don't know what my gift or talent is that God has given me?"

me.....
" Thats o.k. Hunter, you'll figure it out......I really don't know what mine is either and I am a lot older than you!"

H......
"I know what your gift is!"

me .....
"you do......(oh boy, i am thinking) what's that?"

H......
" God made you the best mommy in the world and I got you!"

moments like that....makes life worth living....

*******

Today I had to work. I was asked last week if I could stay until 1p.m. instead of 12 and help with "lunch bunch."
This morning I made Hunter and Hailey their lunches. I decided I better make a half of a sandwich for me too, since I had everything out. I had a lunch sack sitting out and Hailey asked me whose lunch that was. I told her I had to stay later at work today so I made a lunch for myself to take. She is my "sweet-tooth" and wanted to know if she could take one of the Trader Joes peanut butter cups for lunch and give one to Hunter too. I said sure, as I was busy getting Huds meds and feeds ready.

At lunch time today, I opened my sack....
on the bottom I saw something strange sitting in my lunch pail...a little brown nugget....Hailey had put a peanut butter cup in my lunch too.

My heart melted.



*********************************************************************************

Thanks for the info re. pediasure..........I am now wondering if this could be mucous/cough culprit?
Oh, that would be soooo nice if it were that simple!

I sent an email to Pam to see if she could give me a timeline of when we got off the diet and on the pediasure....wouldn't that be something....if it's been about 6 months? I know I should know....but I really don't....it's either age or brain-overload!

Also, really questioning the Lamictal too, and mentioned that as well to Pam.............

I got an automated email response....she is out til Friday! (gggrrrrrr)

Upper G-I

We got through it

I say "we" because I was not looking forward to today. He stopped running a fever on Friday and I do think it was stress related from the EEG.
The thought of strapping him down for 30+ minutes to a board and rotating him like a chicken, made feel nauseous. I guess god finally gave Hudson and me a break...when I walked into the radiology room, the first thing I asked the technician was do we need to restrain him? Put him in a device?
She had the board laying on the table, all ready for him. Not sure what changed her mind. She thought he "looked long" so she said we would go ahead and try having me hold his arms above his head and she would hold his legs.
In my head I said "thank you God!"
It's funny though...Hudson always looks so sleepy. So not really knowing any of his issues, she assumed he would be a piece of cake, as he layed there quiet and still, undressed...we were waiting for the radiologist.
Little did she know he had a whopper of a seizure right before we got to Children's, and that was why he was playing "sleepy boy"
As soon as we got started, the tech started to inject the barrium in his G-tube, Hudson showed his mighty strength, and kicked the barrium right out of her hand, down his leg. She commented to the radiologist that she didn't think he would need to be restrained...Hudson and I both knew how wrong she was...didn't suprise me, cuz I know what a fighter he is!
He kicked and cried, but nothing like the horror of being restrained like a mummy. We rotated him to the right and left and he was less then thrilled, but so-so much better than the board.

The News...

Nissin appears to be in- tact. No refluxing.
Again...thank you God...cuz, honestly, I have been giving him(god) the "cold shoulder" with everything I have been dealing with.
Feeling unheard, feeling my prayers are meaningless, on deaf ears.
Prior to going this morning, I read a fellow bloggers post, and it hit me hard.
I realized, in all of the bad, in all of the disappointment and hardship God just wants me to press into Him...
He needs to be enough for me...it's the realization that if there were nothing left in my life...no husband, no kids, no friends, no home...if all the things that I love were removed from my life...
would He be enough?
Do I believe that he would sustain me?
In the end God is it.
Tough one. I definitely feel I have been put to the test on this one lately.
I want to say He is....but instead I will say I will live my life continually working on this,
it is easy to "say"
much harder to "live."
(But please God, don't put me to the test anymore!!!!)

So back to GI....(sorry my thoughts ran away from me)

we still have to do the 24hr ph probe next week. When looking at the images today, I was shown the barrium, and you could see the barrium traveling up, but not passing through the nissin...none of the barrium passed through. I am guessing this indicates our source being more respiratory vs. GI, and if that is the case we would not have to change the way we feed Hudson...no pump! Again, this will be confirmed with the ph probe.

I talked to one of Hudson's therapists today ...she had a thought....
and she asked when Hudson got off the keto-diet and on the pediasure. She thought maybe there is something in the pediasure that Hudson could be allergic to. A great thought...but I honestly have no idea when we changed his diet. The last 2 years are so fuzzy to me, we have done so much in Hudson's short little life, it all starts running together. I may email Pam and ask her for the timeline, just to see if the 6 months he has been choking on mucous has been about the same time he got off the diet.
On the diet he was vomtting all the time......always something!

Can you tell I am trying to be more "upbeat?"

Trying anyways.

Trying to not focus on all the negative

trying to focus on the positive...

My husband comes home one week from tomorrow!!!!!
( I was cracking up when he called me last night while he was attempting to cook...poor guy...he will definitely appreciate my cooking!)

He is traveling a ton...so even if we were there...he wouldn't be!

San Diego this week

New York the Monday after Valentines day....the Vegas, then back to Seattle....to work....bonus for us!!!!

not so positive....

Hudson's seizures SUCK!!!! they are so, so , so bad right now. I am trying to focus on the gunky issues though...wondering if we get to the bottom of that, that the seizures will let up when he doesn't have to work so hard with this cough.
I do wonder if the Lamictal is making them worse...is it possible? He was getting one pill every other day for 2 weeks and now he get one daily as of saturday.......is  it too soon to think this drug is possibly making the seizures worse? I'd rather ask seizure parents than feeling stupid asking Pam yet another question....trying to save my dignity...don't want to be labeled the "panicky mito mom!"
( for those who asked...we did try banzel and it was horrible for Hudson...seizures were constant and he was in a coma like state!)

I did get a scare this morning...
at 4 a.m. I heard Huds coughing...he was struggling a bit, wheezing, mucous, choking...I had to get up several times, and suction him, give him albuterol....I was having flash backs to when he was like this, but more severe(Dec. E.R./hospital run)...this time, being alone, I feel more uneasy, I question myself and what I am seeing.
Anyways, I brought him in to bed with me where he quickly started snoring in my arms.
I never fell back to sleep.
I am happy he was able to finally rest comfortably, that was the most important.
Hopefully we will both sleep tonight. Both my kids have coughs so I don't know if  it is his usual gunky stuff or if he caught there cough on top of what he is already dealing with.
This is why I am worried when I hear him coughing in the middle of the night.
Flashbacks.

Really appreciate everyone sticking with me through these very rough couple of weeks.
Just need continued prayer that we get to the bottom of the cough/congestion.
of course seizures...always need answers and prayers on that end.