Monday, October 5, 2009

Blake's Health Update 2009/10/05

Howdy howdy, y'all.

We're coming to you today via rain showers with Mr. Sun peaking through the white fluffy clouds! The sun shining on the waves of Lake Ontario is so beautiful. No wonder folks love waterfront property. It's peaceful to have such a view from our hospital room. Mr. Sun is so bright today that he's creating a glare on the computer screen... he's trying to chase away those rain clouds.

It's about 1:30pm and Blake is resting quietly.... finally. Last night was pretty rough with that Pico-Salax laxative. Thank goodness for morphine.

By the way, THIS hospital gives actual morphine, whereas Picton used the synthetic morphine called hydromorphone. And apparently hydromorphone is much stronger than morphine. I don't understand why one hospital prefers one kind over another; but I really don't care as long as it keeps Blake from pain.

(Hokey Dinah! Just glancing outside, Mr. Sun DID chase away the rain! The showers are done, but I think there'll be more before the day's done).

Well, Blake's colonoscopy has been completed by Doctor D. He will be coming to our room some time today to discuss it in more detail, but the meat-and-potatoes of the story is this:

Blake DOES have Crohn's Disease.... he has a very severe case of it.

THAT is why the Prednisone was not effective in the healing, because there is SO much going on in those intestines. Yes, I said, THOSE intestines.... both large AND small are affected.

There are a couple of different meds that can be administered to start the healing process. They are both in the same price category, as he said they are two different companies, so they keep about the same price to stay competitive.

I cannot quote the name of these meds to you right now because they are long words, I have a short memory, and there was no paper handy for me to write it all down and he was in a hurry to get to other patients. He'll be up here sometime today to chat about it all, and I'll get the names of the drugs at that time.

He prefers to start Blake on a drug that is administered via intravenous. The drug is given one day, then again one week later, then again in two weeks, then again in four weeks, then again in eight weeks; and then the drug continues to be administered once every eight weeks thereafter. There is still the chance of flare-ups, but he knows of many people leading very normal lives.

Here is the part where you must take a deep breath.


The cost for this medicine is approximately $18,000.00 per year.


Are you still there?

Yuh-huh. You read it right. $18,000.00.

We now need to look into some type of medical coverage. The first dose is covered here while we're hospitalized. Doctor D suggests we look at Blake's school to see what they have to offer by way of medical coverages, but I don't think that's a possibility because he technically hasn't even started yet. He also suggests a program that is in place for folks to get assistance from our good ol' government based on your family's income. Apparently there are lots of ways to get some moo-lah! (Thankfully!)

I do not know, at this time, how the degree of this disease will affect Blake's schooling nor how it affects his plans for travelling to other countries/continents in the near future or the years to come. I will be checking with many people who I know suffer from this disease to see what works for them (Hi Lola!) and hopefully in time we will come to find a way of life that is very normal (does such a thing as a "normal life" exist with even healthy people? Hmmm, I wonder....).

Jon and I both had our little meltdowns a couple of hours ago and I think we'll be fine now. Blake is sad as he feels his plans for the future are now squashed. I told him not to push any panic buttons.... that things will move in the direction that the Lord allows them to as long as we submit to what HE wants, not what WE want.

As a Mom, I don't care if he's a ditch digger in The County the rest of his life! I just want him healthy.

As a young man looking to his whole life ahead of him, Blake just wants to be healthy to travel and do missions.

I explained that the mission field can be right in your own backyard, but I know this isn't really the time for me to be talking about it with him. Things need to sink in a bit more and we also have so much more to learn. Doctor D feels Blake can lead a pretty normal life, so we'll take things right now from that positive angle.

You all are spoiling us rotten with your cares and concerns and prayers. I have always been thankful for my family and friends. There are literally HUNDREDS of you showing your concern.... most of it from our own little community, but also from other parts of Canada, from the States, and even Brazil (Hello to all of you praying-folks in Brazil!!!!! Thank you from the bottom of our hearts!!!).

We are also being spoiled by doctors and nurses (and technicians and porters and staff..... list is endless), as the care level is top-notch!!! Even our own doctor at home, Doctor C, gave me her personal cell number and home number and wants regular updates. I am overwhelmed at all of this.

And if all of YOU care like this, then imagine how much more our Heavenly Father cares for us. I'll close with the words of that beautiful old hymn, O The Deep Deep Love Of Jesus.

O the deep, deep love of Jesus,
Vast unmeasured, boundless, free!
Rolling as a mighty ocean
In its fullness over me!
Underneath me, all around me,
Is the current of Thy love
Leading onward, leading homeward
To Thy glorious rest above!

O the deep, deep love of Jesus,
Spread His praise from shore to shore!
How He loveth, ever loveth,
Changeth never, nevermore!
How He watches o'er His loved ones,
died to call them all His own
How for them He intercedeth,
Watcheth o'er them from the throne!

Update: Just as I was ready to hit Publish Post, a porter came to take Blake for an x-ray. I didn't know one was scheduled. Running for these tests has just about wiped Blake out today. He came out of the x-ray room with a bucket on his lap.... I guess he was feeling nauseated. He looked quite pale. He's happy to get back into bed, and the nurse is supposed to be bringing some more pain meds to make him comfortable.
(Ahhh... as we speak, here she is! Hi Nurse Brianna!) Brianna just indicated that the x-ray was on his chest, probably routine. She said the doctor would let me know if they found anything. Assuming now it's just routine. They've never indicated a problem when they've "stethescoped" him.

Also, while we were down there at x-ray, Julie H. spotted me and we chatted. (Her husband served as interim pastor at our church a while back, and he now works with my sister Wannett at the church camp). Julie offered her home to me for rest/shower/downtime.... Thanks Julie.

And just a quick note to Carol R. Blake was not feeling well enough to eat your beautiful home-baked apple-crumble pie. I had not had the time to throw it from the fridge to the freezer before Blake had his episode, so Jon just called to ask Blake if he could have a piece. Blake (who really at this point couldn't care less.. hahaha) said that they could have it. I figure it's better that they eat it before it goes bad. Then I told Jon to make sure he brings ME a piece when they come for a visit tonight! So, thanking you in advance, Carol, for 1. your understanding of the sharing of the pie! and 2. your fabulous baking! (I have no doubts it will be scrumptious!)

Will write again soon when I have more info from Doctor D. (And by the way, Blake is having a wonderful sleep as we speak type.) I'm now headed for my breakfast/lunch and it's 3:52pm! (Yes, Mom, I did have a muffin while I waited for Blake's colonoscopy procedure.) I'm DYING for a Tim Horton's French Vanilla! Must remember to call Jon before he comes here tonight!


Lynda Westervelt said...

Michelle, you are inspiration to many, as is Blake, even in his 'weakened' state. God has plans for that young man!!!! We continue to pray for the whole family and try to stay focused on what God's plans are and not what we want necessarily. We want instant healing for Blake and we pray for that for we know that with God that is very possible, but somehow God seems to have something else in mind right now, but i'm sure he has something very special in mind for all of you. In his love, bill and lynda

Heather from Ontario Canada said...

I too will be praying for Blake.

S said...

Wow! So much to take in! When we feel overwhelmed we have to remember our foundation: God is good and He loves us!
We are all here to lift you up in prayer, especially the moments when you don't know what to pray. God be with you and your family!!!