We're home...nearly settled!

Finally. Henry slept. He woke only once. The last week has been very difficult for him. He seems to be settled, now. He's becoming accustomed to his G-tube. He is still struggling a little, but is managing.

His feeding schedule is hard for me to get used to. He is free from the pump for only 6 hours a day. It's hard to be patient. It's difficult to be diligent, and consistent. I feel like I'm always twenty minutes late getting his next bolus ready, or getting his medications. But, we're getting it. It's tough. Tougher than I could have guessed...

It's dark and there are weird whiiiring sounds.

It's been a long day. Up at 4am to make sure everything got in the car, and I still had to turn around and go back... I forgot my purse!
The hospital is beautiful. It's easy to park at 6am. We found the parking structure that is connected directly to the surgery check in... Same floor, and we parked less than 50ft from the door... It was cold and windy when we hauled all four kids into the brightly lit lobby.
We received a repeat of the instructions, got Henry's patient number and went around the corner for a seat.
We only waited a few minutes before they called Henry back for Pre-op prep. He needed an X-ray. They brought the machine up to his room. It was quick and relatively painless. I have been around these hospital rooms enough, now, that I know how to ask for useful information. I used to ask questions, and get almost what I needed. Now, I can say exactly what I need to, to garner the right info.

Click to enlarge- The quilters love what they do!

Henry got a beautiful quilt from the quilting ladies that build crib sized comforters for kids that have to be in the hospital. It's unusual, but looks almost vintage. I love it!
I dressed him in little kidlet scrubs, and brushed back the hair that isn't there after yesterdays hair cut. I hate his hair... but it's best for him. After seeing one, two, three, four nurses, and two doctors - rotaing the -two-at-a-time- with Anastasia, Zane, Grandma, and Noah - I put on some paper scrubs, cap, and shoe covers. I walked with him, into the operating room. Everything is sterile. I was terrified to move... God, what if I contaminated something!
We laid him on the smallest operating table that I have ever seen... on a warming blanket. We covered his little nose and mouth with a strawberry scented mask, and he cried... cried... and went to sleep. I was ushered out, and escorted back to the standard waiting area. A beautiful area, with a fire place, and view of the mountains, and the gardens below.
A nice place to wait. If you have to wait for three hours. Three hours. Dr. Wadie started the surgery at 7:33 and by 10:15 we were being notified that he was closing, and would be out to check in with us.
"Everything went well." He gave us a short list of 'need to's and will do's' over the next three days.
No food - nothing. His stomach and bowels are to rest for 24hrs. Then slow drip, then bolus feedings, then training on the tube, and Henry's discharged!
Things to be concerned about... the nissen fundiplication coming undone. The G-tube coming lose or rejecting.
For now Henry is resting... Morphine calms him, but he won't sleep but for a few minutes at a time. His mouth is dry. He has three teeth trying to pop through. His belly is tender. He hooked up to a blood pressure cuff, a pulse/oxygen monitor, and IV and two little sticky probie things that I'm not sure about.

Drain tip... a reversing of the gtube.

He has a drain, from his g-tube, to collect anything in his stomach.

Antibiotics, so there's no infection!

He's had antibiotics through his IV, and they give him pain meds the same way.

His breathing is heavy right now. I should put this lap top in it's case, and try to sleep.

Tracking Henry's Progress!

This time tomorrow, Henry will be in surgery. I'm a little stressed out. Getting ready for Christmas has been shortened by two days, and then has become getting ready for the hospital. While being in the hospital for Henry will probably not be terrible, the rest of us will be traveling back and forth, and sleeping in the bed in his room.
We'll not be able to sleep together for Christmas Eve, but we'll spend the day's together.

We have a ton of snowflakes to decorate with! Thanks Lisa and Mary! Thanks Grandma! Thanks Aunt Deb! And we have a wonderful paper chain too!

So, tomorrow we check in at Riverbend at 6am tomorrow. Surgery will probably start at 7:20. You can keep track of Henry's progress with this Smartrak website. We won't know his number until we check in, but his Dr.s Name is Wadie. You can track him with that. OR check our Facebook status.

Until we return, Merry Christmas!
God bless EVERYONE!

Henry's Braces.

Henry is being fitted for leg braces today. Why would a boy that uses a whellchair need braces, you ask? Well, there are several reasons.
First, braces will help shape his leg bones. His muscle tone is too strong, and pulls the bone in an unnatural direction where the bones are the thinest and weakest. His ankles could be completely misshapen if not for the use of these braces.
Second, it trains his muscles to pull differently. His muscles are very strong from being in a tight pattern all the time. The braces along with stretching and physical therapy, will help disrupt that pattern.
Third, if these first two things are unsuccessful at changing the patterns and his bones turn to an unnatural position, surgery may be required later. So, doing everything that we can to prevent having his muscles cut, and his bones altered with screws is absolutely key!

I'm having a hard time being brave today. Sometimes, I don't have the strength to wear that "Everything's *Fine" smile. Sometimes, I am sad. Sad for Henry and embarrassingly sad for myself.

Henry sees the anesthesiologist tomorrow. Surgery next Thursday. He has his 'final' fitting for his wheelchair on Tuesday. I think we'll have to add extra padding to the top straps, to ensure his gtube is protected when he's in the chair, which means another 'final' fitting when his surgery is healed.

Then, in January we start the vision stuff. We are still trying to get to the Peds Opthemoligist to get an official diagnosis of Cortical Visual Impairment. It seems that none of the doctors here are qualified to diagnose it. It's pretty clear to me, after reading his Mri, and after seeing his visual responses, that he does have CVI... but we'll need to drive 4 hours to have someone with a string of letters behind their name, to sign the papers. Then we can get Henry on a Visual Therapy plan. Currently, we're sort of winging it, with the little knowledge that we do have. More resources will be available to us with the official diagnosis.

Anyhow, I plan on taking pictures of Henry's fitting today. It takes the sting out of it for me, if I force myself to record it from a visual perspective.

Sometimes, I am not brave.

In the beginning...

I've been wanting to make this video for a while. As I sat down this morning, with a song in mind, and a ton of pictures to go through - I realized that I had no pictures from when Henry was in the hospital. I had to ask my mom to send me some. As I was going through her pics, I bawled. I hadn't taken any pics. I was in shock and denial. I was completely unprepared.
As I began sifting through the hundreds of pictures, the feelings seem to be imprinted on some more than others. I remember what I was thinking and how I was feeling when they were taken.
I finished up my selection and tried to import the song that I wanted to use... and due to freaking restrictions, it wouldn't work. So, I spent another hour trying to trim down something that I could use.
I am not great at editing audio. So I apologize in advance...

But this is a series of pictures from Henry's first hours to just a week ago. The first few are hard for me to look at, but I think they are a part of his story.

Amazing!

We're gearing up for a busy few weeks. Henry has fittings for his braces, and a meeting with the anesthesiologist this week. He's already met with one PT and his ET. We went over some vision stimulus tools. They call it augmentative and alternative therapy. We have a light box on loan, and a toy hooked to a switch. It's Henry's first attempt at cause and effect using a switch. The light startles him, so we'll introduce both things slowly. I love the light box. I think we could even use it without the light on.

Light Box

Switch box. We plug the box intot he outlet, plug the ball and the 'switch' into the box.

'Switch' for henry to turn on the toy. It response with a light touch instantly.

The toy lights up and rotates when triggered by the 'switch'

Toy when not triggered.

We'll continue to try adding these excersizes to his daily routine. There are only so many hours in a day!

We've also just got instruction on massage. Henry's tummy sometimes gets uncomfortable from his eating issues. He can't take in enough water so suffers from bouts of constipation. The message should help 'move things along.'

That's what we did Monday! Bring on Tuesday! 

SnowFlakes

Ok, we have a final date for surgery. December 23rd. We'll be in the hospital over the holiday. I'm trying to stay upbeat. Christmas this year will be a bare one, anyway. I wonder id the timing is the Universes way of forcing us to focus on the right stuff!
Christmas, is about family for us. Gratitude for life and family. If one of us has to be in the hospital, then we'll all be at the hospital. I'll ask the big kids to help me decorate with handmade snowflakes and paper ornaments. We'll wrap up my little herby dolls and give them to any other children that have to be in surgery recovery too. If we focus on how fortunate we are, we won't have time to feel sorry for ourselves!

Prayers and positive thoughts are welcome! (If you want to send paper snowflakes to decorate Henry's hospital room, send me an email ( tritegreen @ gmail . com ) and I'll give you our mailing address.)

Next week we have the leg brace fitting. After that we have the final fitting for the wheelchair, with accomidations to be made for the Gtube.

I'm still waiting on a call from a masseur... we may need to make a few more phone calls to get that ball rolling. January we will revisit the Cortical Visual Impairment, and hopefully get an official diagnosis - so that we can start therapy for his vision!

Scheduling Surgery!

Dr. Wadie confirmed our suspicions. After trying to find the right floor, and the right office, we sat in Dr. Wadies office and discussed both procedures, and how Henry will need both. We were informed that Henry's reflux could get worse if we do the Gtube. So the nissan fundaplication will be an eventual need... there are risks to the 'wrap' as he called it. Because the stitching is also attached to the stomach muscles and diaphram, it's possible for the stitches to be dislodged and may need an eventual re-evaluation... He said that we don't <i>have</i> to do the 'wrap' but it's very likely that he will need it.
So, my opinion... the odds of Henry's stitches being dislodged are lower than the eventual need for the 'wrap'... Do the wrap with the Gtube, so that we don't have to go back and do another procedure. If he needs the stitches re-stitched, we'll deal with it then...

Henry has gained weight. Every time we take Henry to an appointment, he needs to be weighted. Have you ever weighed a child that has no muscle control? Well, I have to hold him on the scale, then pass him off to someone so that we can get MY weight and subtract it, to get his. It seems petty, but I hate the scale, and an already stressful appointment, somehow gets amped when everyone in the world gets to see the scale flash an extraordinary amount of pounds on the digital scale... (I'm totally having a pity party!) But, to change the subject, Henry's eating has been more concentrated and successful... We haven't tried any solid or pureed food for nearly two months, and he hasn't thrown up but a couple of times, in those months! So thank goodness for small rewards!

After this surgery we meet with a nutrition specialist, and an OT to discuss a 'feeding plan'. We'll need to coordinate tube feedings with oral exercises, so that there is an eventual removal of the tube, if at all possible. Surgery is just one step in this process, but there is hope and we're aiming high.

Henry will be fitted for leg braces the day before his surgery. He'll probably have the braces, his tube and the final fitting of his wheelchair before the end of the year.

It's almost overwhelming. Almost. One thing at a time. Distractions from life, and the other children - keep my head from obsessing and ruminating on the ins and outs of Henry's issues. Lewis is nearly crawling, Anastasia starts basketball - the quad team, and Zane want to explore Homeschooling options. They'll keep me busy!

Success!

We're still on the search for advertisers and sponsors! But we have, so far been very lucky with support and enthusiasm!
I love editing and arranging photographs and altering text to make beautiful and eye catching links! Please ask questions and state concerns! We want you to have the best experience possible!

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Henry update:
He meets with a Gastro Surgeon tomorrow. We'll discuss whether he needs a Gtube or a nissan fundoplacation. Or both! Let's hope the snow doesn't hinder the appointment this time!
We'll post news of surgery as soon as we know anything!

Fundraising success! Keep on Truckin'!

The word is out! We are making connections, have several ads in the final editing stages and are continuing to spread the word!
So many people have shown support and shown interest in what we're trying to do here!

Today we're looking for websites and Etsy shops/proprieters to showcase over at Rebecca's Whims. We have a guest blogger at You Have a Kid So Now What, and several more ad spaces go up here!

It's been a busy but productive week! Let's keep it going!