Thursday, February 25, 2010

Medical Update #3


I will spare you all the drama that has played itself out in the last 48 hours and just tell you that the trip to Cincinnati for a second opinion has been cancelled. I received a call from billing at the Cin. hospital telling me that I had no "out of network" coverage unless in an emergency situation, which I am not. Obviously, there were a lot of mistakes on their part. But bottom line is that I have been praying over these very same details from day one and know that God has had His hand on all of it. He alone can make something happen as well as stop it. I learned years ago to trust Him and follow His lead. I'm so thankful that He revealed this "truth" now. Things could have been so much worse had we gone down there as scheduled.

That being said I have decided to go ahead with the original March 1st surgery scheduled here. Just to recap they will be taking out a 2 inch section of my rib, whittling it down and placing it in the back of my throat to keep my airway open permanently. I will be intubated for approximately 5-7 days in ICU. Once the tubes have been removed I will be moved to a regular hospital room to start the recovery process. I'll be honest, and unashamedly tell one and all that I absolutely LOVE flowers, cards, comments from my bloggy friends, e-mails, and pics from the kids!! It's the next best thing if I can't see you in person!!

Thank you for your continued prayer and support during all of this. I really appreciate it. I believe God is going to guide and direct the surgeons hands with precision that can only be described as supernatural!

Monday, February 22, 2010

Interior Designer I am Not

I am NOT an interior designer. In fact, I do not have an interior designer bone in my body. I am not one of those people who just automatically knows what would look nice in any given room in a house. Oh how I wish I did! I know what I like when I see it. I just don't know what to do or how to get there. I get intimidated at the very thought of hanging pictures on the walls. But today I conquered my fears! I hung up several pictures and even a mirror. SHOCKER!!

This was quite an "ugly" little nook in my home. Very practical mind you, but ugly. I think it looks much better now with a few pics!
I love these old antique pictures of the girls. And the quilt my sister in law made me when I got married is nice touch too if I don't say so myself!
A couple Christmas's ago we visited my Grandmother down in southern Az. We spent one day down in Mexico. While we were there we got this funny drawing done of all of us. It's the goofiest looking thing. Rosebud is about the only one that looks like herself in it. But we have the greatest memories and a lot of laughs every time we look at it.
Funky mirror. Don't know if there are any "rules" about how to place mirrors, but we all like it!
Well, there ya have it. My attempt at pictures and decorating. Hmmmmmm. What's next?

Just Do the Next Thing

I have tried this past month, this past year....to keep things as "normal" as possible for the girls. I knew that there was plenty I had no control over and that I would have to completely trust God with. So knowing that, we take one day at a time and just do the next thing. We do what we know to do....what we "can" do. We have set our alarms each night and maintained our homeschool schedule/routine very well despite all the ever changing medical situations. But this last month has been especially challenging. In part due to stress I suppose, and largely in part to a drug reaction that we didn't discover until a couple weeks of taking it that caused "mental confusion." The good news is that I'm off those drugs now and feeling good again, much more like myself! Yeah!!

I also thought I would share a few random pics and thoughts from our last month. The first thing I want to share though is how proud I am of my girls. They are truly amazing!! In the face of fear, they are strong and courageous. They love God and they love their family. They are such a blessing to me.

One Saturday morning Pillar made these cute snowmen pancakes for us! She's so creative!
With three girls in the house we never tire of finding cute new do's!
Ahhhhhh! They make my heart sing!
They were so excited to go sledding with their cousins. We have a great sledding hill not 10 minutes from our house, but I haven't been able to take them this winter. So this was a HUGE blessing!! Thank you! Thank you!
They received gift cards to Claire's this Christmas and bought colored hair spray. How fun!!
I found this beautiful dress for Miracle at the Lands End Outlet. It was the last one on the rack, and in her size too....for 90% off!! It's beautiful with intricate bead work and lace. It was made just for her!! She absolutely loves it and has worn it every week since!
One more little moment if that's what you want to call it. The girls took their 1st Semester History exam last week. And they all got A's! Now I don't mean that in a "look how smart my kids are" kind of way. It really felt like a big pat on the back from God. More like a "Good job Mom!" In spite of everything going on, my kids are learning and thriving!!! Oh thank you Lord for your great mercy and grace!!! As Christians we're not promised a rosy trouble free life. Rest assured trials and tribulation will come our way. But the difference is that "we" don't have to go through it alone!! Ya, we're going through some stuff right now. But you know what? When we get to the other side of all this, and I KNOW we will.....we're going to be stronger, not weaker. What the enemy meant to destroy us......the Lord will turn around and use to make us stronger! Boy will we have a testimony then!!

Bathroom Project

We finally finished the upstairs bathroom. Yeah!!! It looks so nice now. It's amazing what a couple coats of paint, a new border and a shower curtain can do to a room. All on clearance of course!! And I even thought to take before and after pics....aren't you proud of me??? This was by far the hardest part of the job. The Lord was so kind to me and sent me a handyman angel to scrape, sand and prime all the nasty walls for me. And my brother and nephew replaced the shower head to prevent any further problems in the future. Isn't God good?!?!?
Sorry I couldn't get a better pic. The walls are not pink at all. They are a nice warm taupe color, very similar to what I had originally. It's nearly impossible to get a full shot of my bathroom. But I think with a little imagination you can see how much better it looks now!
I'm so glad to be able to check this off my "To Do List!"

Thursday, February 4, 2010

Medical Update

Wow! It seems like forever since I've been able to blog. So I thought I would take a moment tonight and let you know what was going on over here. I've missed blogging. I've missed hearing from you. I'm sorry if this gets a little long....there's a lot going on right now. lol

Part 1

I have recently gone to a new ENT specialist. He is actually a pediatric specialist and all he deals with is teeny tiny airways. He is very confident that with more surgery he can give me about 30% more airway. That's the good news. The surgery that he recommends is taking a portion of my rib and placing it in the back of my throat to force it open. It's a long surgery and has significant risk involved.

A couple of the risk factors being:

1. Loss of voice. Probably just a little breathy sounding, but possibly full loss. Although total loss is unlikely. A permanent trach is a risk none the less.

2. Aspirations. According to him I might have slight aspirations that would go away after a few months....but possibly never. The swallowing system in our bodies is a complex one that involves 4 lines of defense so that food and liquid doesn't get down into our lungs. I would lose one of those defenses, but still have 3 intact. So I might choke every time I drink water, but not so bad that I get pneumonia all the time.

Some other things to be prayerful about, things that I'm struggling with:

I will be fully intubated for approx 1 week following surgery. Not sure whether that would be nasal intubation or oral. I will have to have restraints on my arms, holding me in bed, to prevent me from ripping my tubes out. Doesn't THAT sound like fun?!?! lol Obviously, I will be unable to talk, move, eat or breathe on my own for 1 week. To be completely honest, it terrifies me. I am constantly taking control of my thoughts and keeping myself busy! God has been good to me and I have had no trouble falling asleep. I am believing God that His presence will fill my room and that I will not be afraid, panicky, and anxious when I wake up. Not here at home, and not in the hospital after surgery!

I've been told that the rib "injury" could be pretty painful. I'm believing for supernatural healing there. I will have lifting restrictions, so I don't know when I will be able to do daycare again.

Part 2

Since all of that has been scheduled I have also decided to get a second opinion. The country's foremost experts in "Adult Airway Reconstruction" are in Cincinnati. My brother and I have been on the phone with them and they have agreed to see me and give me a full evaluation.

Right now we're just waiting. I have given them all my insurance information and they are handling that part of it from their end. They see patients from all over the world, so they know what they're doing. Once it's approved, I'll get a call from their office setting up the appt. It will be a 4 day visit with lots of testing. But we'll get their evaluation right away on that 4th day.

I've been reading about the children of Israel throughout the old testament. How they are speaking to me! How many times did God tell Joshua to be strong and of good courage?!?! He wouldn't have needed to tell him that if what he was facing wasn't scary! So bottom line.....I know that my God is GOOD! He has never let me down, and I have no reason to start doubting Him now. I will not be like the children of Israel who doubted, whined, cried, and turned from God when things got tough or they didn't understand. He is faithful and His Grace is sufficient FOR ME!

Thank you for your prayers and support. I really appreciate it!