Matthew will spend a couple more days w/ his nurses and RT's

Matthew's Blog

He can't keep his oxygen levels up when he's sleeping... even while on 2 liters of oxygen.

Matthew is in the hospital w/ respiratory problems

Matthew's Blog

More good news from Matthew's cardiologist

Dr. Mayman... his pediatric cardiologist.
Matthew is asleep in this picture ... after having a huge conniption while waiting. This is Dr. Baron his GI doc.

Matthew's Blog: Two doctor appointments this morning.

Thank goodness October is over and we had all good news from his doctors.

No more specialist appointments for 4 months!!

We don't need to see the pulmonologist or cardiologist for 6 months. His pediatrician is as needed. We just need to keep him healthy during the winter months.

We sure thank our blessings.

I posted some pics while at the two doctor appointments.

Matthew's Blog: No more kidney reflux!! Wahhhh hoooo!!

Isn't he so sweet! Hospitals now have "blue" print now, in the past he wore "pink".

Matthew's Blog: No more kidney reflux!! Wahhhh hoooo!!
We are all so glad it's over ... and he'll never have to go thru that again.
He's ready to get outta there. This picture cracks us up... we call it the "one cheek peek".

Our new "old" woodburning stove

Well, here it is. The wood burning stove we bought from a family in Cedar City. Timmy found it for us by listening to "Tradio"... it's a program where you listen to local classifieds on the radio!! Very very country... it's so funny. This stove is going to be great because there is a blower on the back that will blow the heat coming from the fire (thru those little holes up top) and 8 inch tube ... also, we will be able to burn coal along with the wood. The doors are huge so we could burn a stump! Can you see the deers and the moose on the front?? This puppy was approx 600lbs... it took 4 strong "he men" to carry it up into the family room.

This old one cost us only a third of what a brand new one would cost and fits our needs a lot more. I would have liked to have had a glass front, but we'll get a screen. We bought some beautiful slate from Home Depot, it will go under the stove.
It's an "Indian multi color"... something like that. It's going to be pretty.

Just got home from spending almost two weeks in Beaver. Mike has done a lot of the caulking on the outside of the cabin.

I won't be going up for a couple weeks.

This month is a busy doctor month ... we spent almost 2 hours at his pulmonologist office yesterday... we go for a kidney reflux test Tuesday (that will NOT be fun for Matthew or us) ... he as a GI doctor appointment and an ECHO in a couple weeks. The last ECHO was 6 months ago. As usual, I get nervous about the ECHO. Hoping for no more leaking and no sludge build up on that valve.

Not much else going on around here.

Beaver Blog Cabin ~ Tuesday

See those holes in the logs? That is where a trapezoidal window will go.

Matthew still feeling under the weather. Heck, I'm still feeling under the weather! This has actually been pretty miserable for both of us.

Beaver blog cabin pics and more :-)

Mike sent me these tongue and groove pics a few minutes ago. This is the front entry room area.
The T&G in this picture is over the great room.
This is the front entry. The mudroom will have it's own roofline... and the entry area will have an "A" frame entry.

Mike just left for Beaver. He missed going during his last three days off *pouts* because he was scheduled to go to court for a trial ~ but then the trial was cancelled at the very last minute. GAH! I guess it worked out for the best because he ended up being sick. The boys will be busy for the next three days "making tongue and groove history" as Tim says. The "busy Beaver builders" are looking forward to getting a lot done, weather permitting. It's been crazy snowy and windy the past few weeks.

Matthew and I stayed behind because we are both sick. Matthew is on antibiotics again, poor little fella. It's been a tough month for him. He just can't fight off illnesses very well.
You can see the tongue and groove being started.
Look at that snow! We'd much rather have snow than rain, that's for sure!

Mike took this pic from the very top beam going across the house ~ that is 29 feet high. I yi yi.

Quixa looking for "Fluffy". Here kitty kitty!

Matthew is spending his third day hanging out on the couch. He never does that!!!

The pretty roses Mike sent me for Valentine's Day.

No changes

Matthew was a champ!

The cardiologist said there has been no narrowing ... and the leak is the same as before.

That is fantastic news! We'll go back for another ECHO in six months.

He said when Matthew goes in for surgery, it will be because of the leak and not the narrowing. He mentioned that conduits can get some kind of sludge build up.

They rate the leak 1 to 10, and his leak is still a 3.

Doctor said that he'll need a conduit change once it is between 8 and 10; he said to plan on surgery in about 2 years. We'd been told at Stanford, that on average, these little guys need a conduit change every three years. So, that would be about right. Now, the whiny mother part of me wishes that he was just fixed and we didn't need more surgeries ever again.

We hope medical technology will advance quickly, so that he won't need to go in (approximately) every 3 years .... maybe they will come up with some new kind of tissue or a bovine or pig valve that will last longer.

Thank you so much for your prayers ... we very much appreciate it!! They worked! :-)

(((Hugs))) to you all.

Oh yeah, we tried to go celebrate at IHOP afterwards, but Matthew pitched a HUGE fit as we were sitting down. We got up and left the building. He screamed all the way home!
We didn't know what the heck was going on.

He's been a perfect angel since we walked in the door.

Slideshow below of Matthew getting his EKG and ECHO at Dr. Gary Mayman's office.

Matthew's Blog: An Eating Update

Matthew's Blog: An Eating Update

Life could not be better!

I could hardly wait to get this out to you, so I just copied an e~mail I sent to our buddy Beth Fisher of KVBC Channel 3 news ~ She has been by our side this entire time, supporting us and trying to help us make some much needed changes in this state as far as healthcare is concerned.

We simply could not be more thrilled and excited!

Dr. Mayman said Matthew's leak is actually better than our last visit!!!!!!!!!!!!
CAN YOU BELIEVE IT!!!

It is truly a miracle..... in our wildest dreams, we could have never imagined hearing those words!!!!!!!!

Dr. Mayman pulled out the previous pictures of his heart and said that he can't really explain it ... only that it's rated a 3 now!!!

He said it will be "a while" before his next surgery ... sometime between one and five years... his guess would be closer to five years!!

Words can't describe how we feel. We are in heaven. Life could NOT be better for us than this very moment.

Dr. Mayman told me that he wants me to go home and finally enjoy life, enjoy Matthew, take him out and let him be a kid.

Tears are welling up in my eyes as I write this.
I am overjoyed.
This is as exciting as the day we were told we had more health insurance!!

For the first time in a long time, I feel that I have some peace!
I thank God.

My little guy and and upcoming ECHO

We are taking Matthew in on Monday to his pediatric cardiologist for an ECHO of his heart. I am very nervous about this ECHO. On December 1st, we were at the halfway mark for a third heart sugery.

Let me explain to those of you who don't already know this... Matthew had a (cadaver) valve replacement last March. It started leaking by May and was rated a 2. Docs rate the leak from 1 to 10, 10 meaning it's time for a valve change. On December 1st, it was rated a 4.7.

It has been almost 5 months and I'm so afraid it'll be an 8 or 9. My heart hurts when I think of it. I am trying to prepare myself for a surgery this year...well, as much as you can prepare yourself for heart surgery on your child!

All at the same time, I'm trying to have faith! I struggle with that part.

The problem w/ these cadaver valves ~ the surgeons can't say how long they will last. There are too many variables ... they can leak, they can calcify etc. It all depends on their little bodies. Each kid is different. To me... it doesn't seem to be a good sign that his leaked so soon. Well.. we'll find out soon enough ... With any luck, it'll only be a 5 or 6! I have posted a sketch of Matthew's heart right after this post.

I frequently think of what my e~buddy, Timmy from The Special Zipper says... " it's a roller coaster ride when you have a child with a congential heart defect." What a true statement. Tim is from Australia, he has had his fair share of scares and sugery w/ his adorable little cardiac boy Connor. If you get a chance, you should drop by his blog ...
he has written a sweet post about our other e~buddy Dan of 0ddness in England.
Dan has been MIA for a couple months now and we are trying to cheer him up.

I thank God for the support we get from other families of cardiac children.
And all of you, of course. Support is what helps get us thru it all.

Weekend in Beaver!

We had a busy weekend in Utah. We left for Beaver on Friday morning and got home last night. Mike and my nephew planted over 60 trees around the property. It is so incredibly beautiful there. It's hard to come back to Las Vegas after being in such a peaceful place. The weather was cool and crisp.

I tended to little Matthew who didn't feel well all weekend. Poor little guy. Not sure if it was the altitude or if he had a touch of the flu. (Update on Matthew's blog. I'm so irritated at our G.I. doctor for not doing his job. www.whomagoo.blogspot.com)

We have a crazy week coming up ... a couple doctor appointments for Matthew (Mom also has an appt. Wednesday re: a nodule they found in her breast during a routine mammo, she had breast cancer four years ago),

misc appointments throughout the week,

four friends coming in from Arkansas and California starting on Tuesday (they'll be staying on the strip, I'm hoping they rent a car or can take a cab here, it's such a PITA driving on the strip ~ traffic is quite awful here),

we'll also be helping my son move into his new home over the weekend.

Oyyeee... not sure how I'm going to pull it all off
or if I'll have time to blog :-/

I'll do my very best to get around to say hello!!!
Have a great week!!!

All went quite well today

Matthew was a champ as usual. Everything went perfectly. Mike has posted some great pictures in a slideshow pre op and post op!

www.whomagoo.blogspot.com

We will have results of some biopsies on Thursday ... but so far, everything looks pretty normal .. except for some inflammation at the bottom of his esophagus.

I explained everything in Matthew's blog.

I must run for now... Matthew is getting into everything!!

I LOVE WHAT SLACKERMOMMY DID HERE!