Blake's Health Update 2010/05/02

Before you chastise me for my lack of attention to this blog, let me explain:


My computer was malfunctioning!


Something had gone hay-wire in it since back in December 2009; and whenever I tried to log onto the blogs (my blog and other blogs that I enjoy reading), the computer would freeze or would be as slow as molasses in January while loading. Then something happened that we couldn't even get the wireless connection to work and I had to resort to dial-up. Oh.my.goodness. Talk about torture!



Anyways, I finally found a wonderful, super-d-duper, computer man to come and take a look at things. (Thanks, Ward; things are working GREAT!!!) After two hours of trying this and that, checking boxes and unchecking boxes, and unplugging and re-plugging, and shutting down and rebooting, and unhooking and rehooking cords, and resetting routers, things finally clicked and I once again have my high-speed!!!!

That all took place on April 22nd. On April 23-25, I was at an out-of-town conference. From April 25-27 I was travelling to and from New Brunswick to pick up Blake from college. From April 28 to May 2 (today) I have been with Blake at the hospital. And since there's no internet connection at our little local hospital, I have not been able to update the blog. I have only had time to update via Facebook. So if you're not a Facebook friend, go on over to Facebook and add me. (See right sidebar near top).


So here we are, Sunday, May 2nd, at 11:16pm, and I can barely stay awake to type to you! I will make this as quick as possible and will post any details that I've missed when I'm more alert. This blog also acts as a journal for me with regards to Blake's health. If I can't find information on his past health history with regards to his Crohn's, I can always look back here to refresh my memory.





Blake's health, from November 2009 to late February 2010, was great. The Remicade treatments worked great! He felt good and experienced no pain or discomfort from his Crohn's and Ulcerative Colitis. (Thank You, Lord!) Near the end of February, he started feeling a bit fatigued and weak by times. By the time the middle of March rolled around, he was feeling much rougher and was experiencing bleeding. I immediately contacted the Remicade Co-ordinator in Ontario to order a dose of medicine for him.


If you will recall, because of the cost of Remicade, we had to get a special approval from the Government of Ontario before Trillium would pay for Blake's Remicade. We were denied coverage by the 'officials' on the Review Panel and our Specialist, Dr. D., appealed the decision. He explained to them that Blake NEEDED this med because of the extent of the disease in Blake.


And while we were waiting for the decision on our appeal, Blake started experiencing the extreme symptoms again. So when we contacted our Ontario Co-ordinator, she put me in touch with the New Brunswick Remicade Co-ordinator so we could get Blake a treatment in NB. I will take this moment right now to tell you that these two Co-ordinators (Simona and Krista) are dear, dear women! They have been wonderful and helpful and kind and informative and have gone beyond accommodating! I LOVE them!


Anyways, we set up an infusion for Blake for March 18th in New Brunswick in Saint John's. About a week or two after the infusion, Blake was experiencing some pain. The fatigue set in and the pain returned. (The meds should last at least 8 weeks in his system). Blake spent Easter weekend in Boston with friends, but he suffered most of that holiday. He returned to NB and missed many classes due to weakness. He couldn't even stand long enough to have a shower.


When I called the NB Co-ordinator to ensure he had received the right dose (which she confirmed that he did), she explained that flare-ups are common, even when taking regularly scheduled doses every eight weeks. She advised to take some Tylenol, but if pain got worse or bleeding started, he was to go to a hospital. On April 21st, Blake phoned me late in the evening to say he was at Sussex Hospital not feeling well. They admitted him that night, kept him all day Thursday as well, and discharged him Friday morning. Blake missed two of his exams.


Well, Blake experienced overwhelming kindness from staff at the College. They explained that his missed exams could be written when he felt better. My youngest sister and I arrived at the college on Monday, April 26th at mid-day only to find a very pale, tired, gaunt-looking, skinny young man (in desperate need of a hair cut! Yikes!). After his last exam that afternoon, we packed up his belongings and headed for home. (He had already managed to write his missed exams.)


He experienced some pain on the way home and I found out the next day that he'd started bleeding on the way home. We had taken our time coming home and arrived in the County on Tuesday (April 27). By Tuesday night, the bleeding had worsened and by Wednesday morning, Jon and I made the decision that Blake would be heading to the Emergency Department in Picton.


The staff there was wonderful and decided he needed to be admitted. (Thank You again, Lord!) They did bloodwork and x-rays and then took him upstairs to the old Intensive Care Unit, which I guess they now call "The Monitoring Room". Blake was not critical, but apparently there was a lack of beds.


He was immediately started on I.V. and given more Prednisone, Cipro, & Flagyl. (Doctors in NB Hospital already started him on these three meds the prior week). His blood count was slightly dropping, and a bag of blood was put on order in case levels continued to drop and he would need a transfusion, just as he did in October 2009.


Blake was moved from ICU to a private room on Friday, April 30th while he waited for a bed at Kingston General to become available. He continued to lose more blood and experienced bouts of pain, but nothing a little morphine couldn't fix. As the days have passed, his bleeding has become less and less. Still a little weak, but certainly feeling better. He has maintained a good appetite.


Today, Sunday, May 2nd, he is still awaiting a bed in Kingston. He was taken off the I.V. this afternoon and was told to drinks lots! Bleeding has pretty much stopped today.


For my own records, but you can read if interested, here are the hemoglobin levels:


Normal Level = 140
Wednesday, April 21st = 130 (NB)
Wednesday, April 28th = 136 (Picton)
Thursday, April 29th = 122
Friday, April 30th = 124
Saturday, May 1st = 118


When you are dehydrated, the number is higher. That is why it's high on April 28th but so much lower on April 29th, because he had been on I.V. fluids for the night. Because he is maintaining a level around 120, Dr. C. said that's good and they're not concerned about a transfusion unless it starts getting around 80.

One of the things a Specialist in Kingston conveyed to Dr. C. by phone was that it is a possibility that Blake's body is now resisting the Remicade medication. How unfortunate, because it was healing Blake up so nicely. But apparently that happens. So.... we'll try another medicine.


Blake was supposed to meet with his own Specialist, Dr. D., on May 12th to begin the medicine called Imuran. Imuran is a medicine that many Crohn's patients are taking and it IS covered by the Government (which tells me it must not be anywhere NEAR the price of Remicade!!! Please excuse my attitude, but I believe I need to use the "sarcasm font" here!).


Anyways, Imuran takes 6-8 weeks to even begin to start being effective, so a Specialist in Kingston told Dr. C. that once Blake gets to Kingston, they'll likely put him on a different medicine that would take effect quicker. However, now that he's healing up a bit better here in Picton, as of Sunday, they may make the decision to start him on the Imuran. That might even take place here in Picton, but I really haven't got a clue until I find out more on Monday morning.






Well, I said I was going to make this quick, and I most certainly did NOT do that. But now you basically have the whole scoop there, folks.


Blake is taking this all very well. He's more upset about the fact that his mission trip to Brazil in June could be compromised by his illness. I'm sure there will not be health coverage for him, based on that fact that he's been hospitalized and changing meds six months prior to travel date. I am praying that the Lord will direct Blake and give him a clear mind as to what is best for him.


We are thankful for the Lord's hand on Blake's life, and we are thankful for the many hundreds of people that are praying for Blake. From the bottom of Jon's and my hearts, Thank you, Thank you, Thank you.


Now before I close, I want to share a very true story with you. When Blake was in ICU in Picton, there was a lady in a bed across from him. When Blake was being moved from that room to the private room, the lady stopped me and said, "What's wrong with your boyfriend? He's so thin!" hahahaa. I had to stop and pick my jaw up off the floor. I said to her, "Well THANK YOU for that compliment! But that's not my BOYFRIEND.... that's my SON!!!" hahahaha I was SO tickled! And I haven't even had my hi-lights yet! hahaha. Blake says that she was likely high on morphine. I can assure you she was NOT! My sister says, "Maybe she just thought Blake looked OLDER than he actually is!" I said, "Well if THAT was the case, she'd have called him my HUSBAND!" So, I'm taking the compliment! I deserve it! hahahahaa. [Wannett, Jon, and boys: Stop raining on my parade! :o) ]


That's it for now folks. If we do get to Kingston, there'll be internet and I'll keep you posted. Until that time, Facebook status is updated daily, or there'll be notes on my Facebook Wall by my sisters.


Now, may the Lord bless you and keep you. The Lord make His face shine upon you and give you peace. Amen.

I'm Sorry

I'm sorry....

It has been ten days since my last post, and I apologize. I have no excuse except the fact that my husband is hogging the computer, I've had writer's block, I've been working on the boys' sports equipment room, I am tired.

How's THAT for excuses. hahaha

And for SOME unknown reason, I have no choice of font or type size.... what is up with THAT? So I have no idea how this will look when I hit PUBLISH POST. (UPDATE: Duh.... I was working in Edit Html mode..... brain cells on winter holidays.)

I've been trying to get in some type of routine lately.... it's not workin' well. I am now involved in a weekly Bible Study. We are studying Beth Moore's "Esther". I'm quite excited to be involved in it..... ANY study actually. I need discipline and need others to be accountable to. If you don't do your homework, you'll get behind at the weekly gathering; so I've been trying to keep up on it. Sometimes I have to do a couple of days' studying in one day, but that's ok. Usually once I get into it, I don't want to put it down.

All is well on the homefront. Kids are back to school today, the beginning of their second semester. Exams are done. We didn't get any phone calls from the school, so I am to assume that the boys passed their first-semester classes.

Hockey has slowed up a bit, since we lost out in the last series of games; however, Coach Staley said that we likely will be rollin' again this weekend. I think Jared will be excited to get things movin' again. Jake's games have continued on Sunday nights. He's scored a few goals lately. Two weeks ago he got elbowed in the jaw by some kid who REALLY needs to be careful to not meet THIS "Momma Pitbull with lipstick". The jab to Jake's face broke the apparatus that holds the face cage on the helmet. Jake wasn't able to close his jaw completely until the next morning. House League is NO BODY CONTACT; however, Jake said this kid, during their handshakes after the game, was going down the line saying to the kids, "I hit YOU, and I got YOU, and I hit YOU....... "Hello, Mr. Referee? Watch the news lately? Mr. Cormier, who was Captain of the Canada Junior Boys, has just been suspended for elbowing to the face...... let's keep that in mind while we're supervising the no-body-contact-House-League games in Picton, OK????" Jake would have LOVED to play Rep hockey where you can play a little more aggressively, but I just don't think my nerves could handle it!

Jon is just itching to get trucking again. Hopefully that will happen within the next few weeks. This economy is stretching everyone to their absolute thinnest! Wish my waistline could say the same thing. haha. Anyways, he's helping a friend move some old freezers today to the scrap metal yard.

I was able to connect yesterday with my youth group leader from when I was a teenager (Hi Mr. A). That is one thing I love about this technology.... being able to find old friends (Not that you're "old", Mr. A; I already clarified that in the email. haha).

I need to finish up our many "thousands" of Thank You's this week. I'm ashamed it's taken this long. I was hoping Blake could help; but it's important he concentrate on his studies and health. We had a scare last week. Received a call that he'd been taken to hospital, dehydrated and throwing up. Not being able to reach my contact at the college, I called the local hospital. The very kind nurse gave me an update and allowed me to speak to Blake. Once I heard his voice, I was immediately calmed in knowing that it was not a Crohn's issue, but rather the stomach flu. He was given fluids and gravol via I.V. and the bloodwork came back fine. Whew! Thank You Omni-Present Lord for watching over Blake!

And thank you to the very kind staff at Sussex Hospital (especially Nurse Nancy for connecting me to Blake!). Wannett and Danielle were prepared to leave immediately to get me to his side in New Brunswick. They were relieved Blake was OK; however, they were disappointed that we couldn't experience a road trip that weekend. Don't worry, sistas, we'll get a Sister-Weekend-Away (maybe a "Sister-WEEK-Away") someday.

After all, it IS all about Blake.

It WAS about Carley for a while. Now it's Blake. Who's next???

SOME day it will be about US. haha.

Well, folks, I need to get some work done today. Just wanted y'all to know that I'm sorry I've put off doing a post. I'll get more on track. I miss my own computer. This computer of Jon's is NOT my friend. We have many battles and exchange words and beeps.... usually the computer wins.

I've even been behind on viewing the 'blogs I follow' because this computer has been extremely slow since I got it repaired, and it takes too long to download some of the pages from the web. I'm tellin' ya, these machines have minds of their own. It's more stubborn than ME, if you can imagine THAT!

So, God bless, folks. If you're a Facebook junkie, I've joined (against my will.... I joined to keep better/easier contact with Blake). Feel free to Add me as a Friend HERE or go to the right sidebar and click on my name under the heading FACEBOOK.

'Til next time, I bid you adieu.

I'm BAAAAA-aaaaaack!

Hello friends!

I AM BACK!

I am back from New Brunswick.

I am back to the blog world (thanks to my friend who helped to fix our computers from some nasty viruses as well as a bunch of nonsense stuff on the computers that were slowing them down. Now I can blog again.... yeee-haaawww).

I am back mentally and physically (well.... jury's still out on that one) as I am slowly getting caught up on some housework. The laundry is now caught up for the first time in months.... maybe since October or November??? (How completely sad is THAT????) I got the floors swept for the first time in days weeks months..... months???..... well, ok, maybe not MONTHS, but it sure has been a looooong time. So THAT alone has helped me mentally (you know... a sense of accomplishment!). haha

I'll get things updated over the next few days (although we have five or six hockey games in a matter of five days, two of which are not quite two hours drive one-way). I want to give you some updates on Blake at school. (Hint - He's having a great time!)

I am anxious to get back to my blogging. I have not kept up to date on the blogs that I follow, and I feel as though I'm missing a connection with some great folks, even though I've never even met some of them personally! Hopefully by next week, I will have gotten into my "new routine" and the blogging will get back on track.

Next week I will be involved in a new Bible Study series at our church. We'll be doing a Beth Moore study (wa-hooooo!) and I am anxious to get into The Word with other women on a regular basis.

Lots coming your way, folks. And, yes, I will soon be downloading some photos from my camera (which I haven't done in months!) and we'll take a look at the life and times of the Found Family. hahaha I also need to spend time finishing up our Thank You's and preparing a huge Thank You to put in the local newspaper. Lots and lots and lots and lots of folks to thank!

OK, my flannel-covered pillow is beckoning me. I can hear it calling my name.

Meet up with me again soon.... right here at Fiddlers Found! Stay tuned!

Why blog?

Last night I had the opportunity to have tea time with one of my sisters (Thanks for the visit, Wannett).



It was nice to be available for some long overdue chit-chat time.... just the two of us... a rarity!; and I didn't need to feel guilty about leaving anyone at home because Blake, Jared, and Billy had gone to a movie; and Jon, Jake, and Mikey were out cutting wood.



One of the things Wannett and I did was look at my blog. I wanted to see how things appeared on her computer. (It kinda distorted our faces, making them long and skinny-looking..... don't get me wrong, I LIKE skinny!, but I already have a long-shaped face, so her computer's image of me and Jon and the kids didn't do us justice.... oh well.... get over it Michelle).



One of Wannett's questions was, "How long DOES it take you to do a post?" I said, "Oh not too long, depending on the post". Then I thought about it.... sometimes it SEEMS as though it's not a long time, but I check out the clock and think, "Oh Man! I've got to get off this computer and get something accomplished in this house today!" That ol' clock just ticks away quicker than I think.






But I find this blog is therapeutic for me. I've always wanted to journal or keep diaries, and it's just never happened. This is sort of like that, but more fun because you can add pictures. And I can write about whoever I want and post it for, literally, the whole world to see! hahaha (So, be nice to me, folks.... hahahhaa)



I decided that it doesn't matter if I have lots of readers.... I might be the only one who reads this blog. (And some days, I AM!) Some days I wonder why people even keep returning! I think, "I'm sure they MUST have a life... what are they doing HERE?"



But I follow other blogs where people say the same thing. I LOVE checking in to see how my friends are doing. (Christine: FYI, you've gone MONTHS without a post!) And I LOVE 'travelling the blog world' around Canada and down to the States to see what's happening in the lives of others.



Following other blogs has helped me to not whine about my own life (well, at least not whine as much!)..... there are people who are really going through some very trying times. And because my trials at this time are not as intense as their's, I can take that time to pray for them and their situation. One lady always says that she can't understand why people want to know how many diapers she's changed, what she served for lunch, and if she got flowers watered or not; but her followers are interested in what she has to say, no matter how menial, so.... she posts.






I think a lot of it hinges on the fact that so many of us are going through things, and we need to know we're not alone. We all have the trials and tribulations.... (you're just coming out of one, you're currently going through one, or 'do-up-your-seatbelt' because a trial is on it's way!).... and it's good to know you have a support system.



There are a bunch of caring people out there! There are blogs that have thousands of people checking in every day. What a great support system. Even our situation with Blake's decline in health.... I can post updates, people can check in, and bang!... countless prayers rise upwards to our Father on Blake's behalf. If that's all this blog does, then it's worth it.



I appreciate reading blogs where I am uplifted and encouraged, blogs that hit the nail on the head because they speak to exactly what I'm experiencing. Like today, for example. I checked out a blog, that's intended to "(in)courage", and the story hit home with me. Check it out by clicking here.


Oh, someday I'll be able to share my story with you, or at least parts of it; but for now, like the above "(in)courage" article, there's a pile of garbage that's been dumped on my floor. And, yes, it stinks. It's a rotting mess. And "I" am the only one, with God's help, to clean it up.... even though it's not my mess. Someone else dumped their garbage, thinking they had the right to dump it and then carry right on with their own lives as if nothing had happened.






"They" left the mess and "I" get to clean it up. Nope, not fair at all. But God never said life would be fair. And I can't leave their garbage here on my floor because its stench affects me and my family. So, with God's help, it's getting cleaned up, little garbage bag by little garbage bag.



[sigh]


Well, Wannett, in answer to your question of how long it takes to do a post.... today I shall answer "too long". And the system won't allow me to upload any pictures today, so add on a few extra minutes to sort out THAT problem.

(Update as of 9:36pm.... Wannett: I wrote this post this morning, but Blogger had problems with uploading the pics, so I waited until tonight. In reference to your question, I guess technically the post took about half an hour to type, but if you want to get REALLY particular, it took about 13 hours and 30 minutes. Haha.)


Time to get organized and get something accomplished. But just unloading that one particular garbage comment has already made me feel that I've accomplished something. Pray that I get the "non-permit-dumped-garbage" cleaned up. Pray that the Lord gives me direction in how to clean it up properly and effectively and get rid of it at His disposal site so that the floor is cleaner and the air is fresher.


And while we're on prayer, let me know how I can pray for YOU. Going through a trial? Got any stinky garbage? Don't feel that you need to share your details, simply just tell me how I can pray for you.