Doctor Visit Days are always a bit stressful.
Docs always want blood drawn - which is Josh's most dreaded part.

Today, we saw Dr. Danney. He is the hypothalamus/glandular specialist who keeps a close eye on Josh's growth, hormones and development. He has to examine Josh's private areas; uses extremely accurate digital equipment to get Josh's exact weight and height. And, he requires Josh to give urine samples at every visit.

The good news from today's visit - Josh seems to be back on schedule for the last few months where his height and weight are concerned. There wasn't much news yet for any other types of growth - he hasn't yet gained another shoe size - and no major changes in private areas to report. (I guess no news is good news there - at least for now).

The bad news - Josh's bloodwork (which took FOREVER & several sticks to get barely enough blood for some of the tests ordered) showed that Josh's sodium level was very high - 167. That means Josh is very dehydrated despite all he is drinking now. (he had a glass of orange juice and a box of apple juice this morning before his 9:15AM appointment). So, Josh has to drink more than 3 Liters per day now and go back to have (yeah!) more blood drawn on Friday morning.

Josh is very upset about having to be stuck again, but I keep telling him that if all they do is stick him for blood on Friday, we'll be doing good. Because if the tests show his sodium levels are still too high, the doctors are gonna want to put him back in the hospital and hook him up to IVs and do many more tests to figure out why he is getting so dehydrated - really no fun!

So keep us in your prayers and if you see Josh - help me push him to DRINK, DRINK, DRINK!!!!!

YIKES!!!

Sleeping soundly around 6 this morning, I thought I heard footsteps in my room - I thought maybe James had gotten up and was coming back from the bathroom - wrong. Suddenly I felt a tap on my back and I jumped about a foot out of bed.

It was Josh and he was trying to say something to me - I heard the breath sounds - but no voice. I thought maybe he'd forgotten to grab his passy Muir talking valve - wrong again. His trach had slipped out of his neck! And he couldn't get it back in.

I directed him out in the hall near a light. I noticed the trach ties were still in place, so I undid the velcro holding them together to make sure I was able to hold the trach tube in the right direction to get it back in Josh's neck. Try as I may, I could not get it to slip back in. I could only get a couple of centimeters to go in - no good.

I had him hold that in place for a second and raced after his trach that is a size smaller - hoping it would fit. All the instructions we'd learned for a trach emergency went flashing through my mind. I remembered that you have to get the 1 size smaller if the same size doesn't fit. And if that doesn't work - you grab a suction tube and put that in then call 911. Luckily, I was able to get the smaller size one in.

Then I realized why Josh had gotten up to begin with. He was wet and all his bedding was too. My poor baby. I grabbed all his wet stuff and took it down to the washer and found some clean dry stuff to put on him and his bed. I got him back to bed and hooked again to his vent and monitors. He was still upset. He hates wetting the bed and worried because we couldn't get the same size trach in place - worried about that meaning he might have to go to the doctor and what they might do. I kept reassuring him and he finally went back to sleep. And I climbed back into my bed to try and sleep a little more, too.

I kept going over everything in my mind again and suddenly realized that I should have tried putting his same size trach in with the stick looking device in it (like I would when I change his traches) and with lubricant on it. In my haste, I hadn't even thought of it before. I decided to get back and try it that way before his stoma (opening on his neck) had a chance to close up further around his smaller trach. I hoped I was thinking of it soon enough. I woke Josh, apologizing that I hadn't thought of it before and tried the same size trach again as I described above. It worked - slipped right in - phew!!!! What a relief. Josh was relieved too and we finally got to get some real rest after that.

My favorite "Mother" Story

I was asked to enter a writing contest by submitting my favorite "mother" story.
The prize was a nice gift certificate to Bath & Body. Whether I win that prize or
not was not that important to me. But the message in the story and the feelings
in it, I am happy to share. I thought I would now share it with all of you.
Read below:

My young son looks up at me,
his blue eyes shining,
but his mouth unable to emit words.
A tube down his throat, taped at his top lip
gets in the way so even though he is moving his mouth
to say the words, I cannot make them out.
He so desperately wants me to understand him;
and we both feel like I should, I am his mother.
But no matter how frantically I try
to come up with guesses, I just cannot
figure out what he is trying to say.
Maybe he could write something to me –
but he hasn’t learned to spell many words,
and his hand is bound, so even that doesn’t help.
In fact, it only makes it worse;
he becomes more frustrated
and tears form in his eyes.
If only he could get up out of his bed
to go get an object to help me understand.
What could be worse than to have tubes
in your mouth and nostrils,
IV's attached to your arms,
having to wear diapers
far beyond potty training years
and you can't even get your own mother
to understand your needs?

That describes many days
my son and I faced
in the weeks leading up to his 9th birthday –
a day we would mark in isolation
in the pediatric intensive care unit
in the hospital.
That birthday seemed like it would be
our most dreary and depressing –
because my son would not be able
to have any of his friends
or much of his family around him.
He would not yet be able to eat cake
or even be free of all the tubes
binding him to his hospital bed.
Those days in the hospital,
I cried so many tears –
as I thought of the party
I did not get to plan for him,
and all the things I was sure
he was feeling.
But the only time I would let myself cry
was when I knew he was sleeping
or I went into another room.
I was so busy being so strong for him,
but inside, I was crumbling.

The day of his birthday finally arrived.
His nurses and hospital staff tried
their very best to make Josh smile.
They brought him gifts, balloons
and decorations. They sang to him
and promised a cake the moment
he could eat some.
Then, our church family got into the act –
they collected money and taped it to a giant card.
They brought that plus bags and bags
of gifts for him.
He probably got more birthday presents
this year than he got in the last five
altogether!
And we got to throw him a party
a few weeks later once we got home.
We combined the occasions –
getting to come home from the hospital
with his belated birthday
and invited friends and family
and we all enjoyed ourselves.
And for this party –
to make sure there was enough –
we baked four cakes!

What makes this story my favorite,
as a mother, was to see just how well
my son accepted such terrible medical
circumstances, to feel the love
so many people showered upon us
and the one on one time I got to spend
with my son
that would not have been possible otherwise.
I will always cherish that time,
despite the difficulties.

I hope that story blesses you like it does me.

Have a wonderful day!

Vanessa

PICTURE TIMELINE

Joshua was first hospitalized after a
throat infection in March 2005
He scared us terribly when he went into
respiratory arrest and the doctors said
we almost lost him.

Joshua wanted to go to Chuck E. Cheese
as soon as he got out of the hospital
in March, 2005




Joshua (with Mom by his side)
was back in the hospital from
August 30-Oct 4, 2005
*this time he got a trach & a diagnosis*

At home, Josh has to hook to a ventilator
when he sleeps as well as a pulsox
machine and an apnea monitor. He
slept on an air mattress on the floor of
mom & dad's bedroom for a while as we
got used to the machines, etc.

Blog from Friday, April 21, 2006

Odd things in the night and morning

This is the day that the Lord hath made. I will be glad and rejoice in it.

If you are like me, sometimes it feels like one day is not much different from the next. You wake up, go through the same routines of getting ready, heading out where ever you are going, etc. etc. For me, it is getting myself up and dressed, getting my kids up and ready for school, taking my son to school, making meals, cleaning, taking care of bills, and so forth.

But even if it seems there are very few differences in your activities, sometimes there are some strange things that happen that set our days apart.

Here are a few of those odd things that set this day apart for me - so far:

We had a storm last night that rolled through our area. With it came the lightning and thunder and pounding rain. We experienced a quick power outage and when the electricity came back on, something caused a lamp near my bedside to come on. This was unusual and quite unexpected. This lamp requires you to touch the base to switch it on. It goes through different levels of brightness or dimness before it switches back off - but every level requires a touch. Nothing touched the lamp to make it come on and that was a first. It startled me and puzzled me, but I used the light to see to check on things in the house before going back to bed and to sleep.

While getting ready to take my son to school this morning, I noticed I had left one of the dogs' water dishes up beside our grill in the backyard yesterday. So, I thought I'd run out and get it, clean it out (like I meant to do before) and make sure the dogs had enough food and water. As I stepped out the back door, I noticed another of the dogs' water dishes beside the dog house full of rainwater - and floating inside - the corpses of three small mice! Yuck! My daughter, Steffany commented that maybe mouse poison might not work but apparently water does. Very weird.

Anyway, none of these are very important events in the course of our lives, but sure keeps our days from being too dull, don't you think?

Now for the important stuff:

Josh is doing better today - I think, after he came home from school yesterday and fell asleep on the couch. I hooked him up to his vent and he went on to sleep for about 4 hours! He got up and ate, etc. but went back to bed and slept all night, too - even through the storm. (Another benefit of his ventilator - it makes enough noise to drown out the sounds of the storm for him).
He and I have plans to go to a hayride tonight with a group of "Sparks" at church - these are the 1st & 2nd graders at church in his AWANAS program. We are expecting to get to roast hotdogs and have Smores, that kind of thing. It should be great fun.

Steffany & Jenniy (our new house-guest) have plans to go horseback riding with our new friend, Amy. They are looking forward to that, too!

We have a wedding to attend this weekend - friends of James' from his work. I'm sure we will all enjoy it.

And, we hope to find SOME time this weekend to try out some new jigs we got out at the lake.
So - I guess despite it all - all is well with us for now.

God bless you all for reading through all this nonsense and have a great weekend, too!

Vanessa

Blog from Monday, April 24, 2006

Praise through the Storm

On the way home from taking Josh to school this morning, I was listening to a song on KLOVE called "Praise you in this storm" and it got me to thinking. I live this song almost on a daily basis.

Here are the lyrics:

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen"
and it's still raining

As the thunder rolls
I barely hear
You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands
and praise the God
Who gives and takes away

Chorus:
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear
You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands
and praise the God
Who gives and takes away

Chorus
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Repeat



Josh is still struggling with symptoms of his disease/illness/syndrome - whatever you want to call it. One week (sometimes more) he'll have trouble with his body temperature, then he'll have times when his secretions are thick or his stoma (where the trach goes in) is sore and red, he struggles with the size of his belly and the last two days, it has been that he wakes up and has wet the bed - throroughly! He just has no control over so much of these things and I know this cannot be easy for him.

Sometimes I just want to cry for him - but you know what - I have never seen him shed a single tear over any of this - with the one exception being when they needed to stick his arm to put contrast solution into him for an MRI.

I know I've shed my share of tears through all of this - with the loss of control or the feeling of control - with his health, with my job(s), with money issues. It is so hard.

But I am so glad that God is still in control and has promised He will be there to see us through this storm.

Keep on praying for us and I'll continue to try and shine for Jesus through this storm!

Blog from Wednesday, April 26, 2006

Thankful for Josh's school nurse

I'm sitting here this morning feeling so glad that Josh's school nurse is back with him today. She is there most days but she was sick with fever yesterday. And the nurse who would have taken her place was on vacation, so there was nobody else to be with Josh yesterday - but me. So I got to spend the day back in elementary school - yeah!

I found that alot has changed since I was in grade school, but a lot is still the same. They still begin the day by saying the pledges - but now there is a moment of silence so that kids or teachers can pray or meditate or whatever. And Josh leaves his regular class for a big portion of the day to go be in a small group for specialized attention in reading and math. He seems to do very well in there in the small group setting.

For "specials" Josh had art. I don't remember going to another classroom with another teacher for art when I was that age, but I guess it works better this way, because all that glue and glitter and all get to stay in just one room rather than be all over everywhere in the school.

Lunch was great - we had enchiladas. Well, I did. The other choice of entre was hotdog - that's what Josh chose. The food was quite tasty, and I am glad because I didn't have a chance to pack anything for lunch before heading to the school. Technology seems to have helped in the cafeteria, too. Now, a child punches in his/her id number and it brings up their name and even a picture of them on a screen so the lunch lady can see that it is the right child's account and see how much money they still have available.

After lunch was recess. That has mostly stayed the same, except that the school doors have special locks with buttons and magnet looking keys that the teachers have to get back in with. One student was a bit too interested in picking the lock to get back in. Other students asked and received the teacher's magnetic key thing to get in and this student would tag along inside just to return to "pick" the lock some more. I hope he doesn't damage the locks so nobody can get inside! :)

Josh's oxygen sats got too low upon coming back inside from recess. He was down to 88 percent! The doctor wants to make sure he never gets below 94, and if he does, he is to go on the ventilator. I told Josh he needed to take some big breaths and fan himself - he was pretty sweatty. His sats came up and hovered around 94, so I didn't make him get on the vent. I have noticed that his heart rate tends to go up from 110 to around 140 and his sats get low nearly every day just after recess. I'm not sure what it means or if we should eliminate recess for him. I'd hate to do that because he so enjoys playing football (mostly tossing it around) with the other boys outside.

It was a long day - or it felt like it was. I came home tired, and I can imagine Josh did, too. But we had more to do and didn't get a good chance to rest until it was time for bed. And we watched the Spurs last night. Josh watched until the game went into overtime. Then, I had to force him to turn off the tv and go to sleep. It was a good thing, too, because the game didn't wrap up until midnight! But the good news is they won!!!

Josh's nurse said she was still tired today after sleeping alot yesterday, but she was not running any fever, so she came to be with Josh again today. I'm glad because I really need to rest and catch up on stuff around the house today.

Meet Joshua. He is 9 years old. Until March 2005, he was your normal, happy, healthy boy. So what changed in March, you might ask? That is when we got our first hints that he was suffering from a very serious breathing disorder.

March 2005, Joshua was recovering from a throat infection. He was feeling better and back to school, but very tired. He would come home, lay down on the couch and fall asleep - for the rest of the day. This happened a few days before I decided to take matters into my own hands.

I thought giving him a bath would help liven him up enough to get his homework done or to at least eat dinner. But he came out of the tub, very light headed and weak in the legs. He fell down in front of me. I discovered, then, that he was also running a fever. I thought his antibiotic must not have been working, so we needed to get him into a doctor for more.

We took him to an emergency clinic right away. By the time we got there, though, Joshua's lips and fingers were turning blue. They found that his blood oxygen saturation level had dropped from the normal 98-100 range down to 50! They put him on oxygen and called for an ambulance.

He was admitted into the hospital quickly and put through many tests to try and find the cause of his sudden health troubles. No answers could be found. But by morning, Joshua had gone into respiratory arrest! He was resuscitated and intubated. His father and I were falling to pieces watching all of this. And doctors continued testing and probing and scratching their heads.

A few days later, still in ICU, Joshua's left arm and leg went numb and he could not move them. The doctors were still baffled. Their best guess was that Joshua had an auto-immune disorder. And they gave him powerful steroids to try and reverse an attack on his systems. A few days later, he seemed to be recovering. He could move his left arm and leg again and was beginning to be strong enough to breathe on his own. So after two weeks in the hospital, Joshua was released to go home. He would continue receiving physical and occupational therapy on an outpatient basis.

Joshua went back to school. He enjoyed the summer break. He was getting stronger and seemed to be doing better - with the exception of a sudden unexplainable weight gain and mood swings. We thought it was a reaction to the steroids and his coming off of them - and expected things to get better with time. Then Joshua went back to school in the fall.

Two weeks into the new school year, and Joshua started feeling a little sick again. His throat hurt and he was very sleepy again. This time, I took him right away to the doctor. Joshua's blood oxygen saturation level was beggining to drop again - so far down to 80 percent. The doctor recommended I take Joshua back to the hospital to the ER. By the time we got there, Joshua's O2 sats were down to 68! He was again admitted to a hospital - but this time, he was taken to a special children's hospital across town. Hopefully the new doctors there could come up with a diagnosis.

The day after being admitted to the children's hospital, Joshua had to be intubated again. And he had to go through all the same tests - plus more. He was again in the ICU - this time for 6 weeks! Most of that time, he had a tube down his throat so a ventilator could breathe for him. Doctors asked us to allow them to surgically place a tracheostomy tube in his throat, so he could still have a ventilator but could finally talk and eat again. We agreed, thinking this would be a short-term fix.

Three days after the tracheostomy procedure, was Joshua's 9th birthday. He was still in isolation in the Pediatric ICU and could not see his friends or much of his family on this very special day. And he was still not able to eat. It was heart-breaking for me. But Joshua was quite a trooper through all of his ordeal so far. Despite some disappointment, he still enjoyed the gifts he received and tried to make the most of things.

For more on Joshua's story, stay tuned for more of my blog entries. You can also read blogs I've written in MySpace ~ at www.myspace.com/vanessa1973.