Blake's Health Update 2010/05/16

Holy, Holy, Holy

Lord God Almighty,

Early in the morning

Our song shall rise to Thee....

OK, so I seem to be having a problem with that "early in the morning" thing. I WISH I was a "morning person".... getting up early, eager to greet the day... up before the crack of dawn.... hahhaa....

Yah.... I WISH!!!!

We've been having trouble getting motivated to get out of bed... not just me, but Blake (obviously) and even Jake and Jared too. Jake was always my early riser, having barn chores at 5am just up the road a few clicks. But he's not been doing that lately and seems to have gotten out of the habit of waking early.

I think part of the problem is that we have been staying up later. The key is likely to be in bed by 10pm every night, and then maybe we'd feel like getting up. Blake's reasoning could be the Prednisone, as it keeps you awake; however, I believe the biggest part of his sleeping-in is the genes he inherited from me...... being a night owl... not an early morning rooster!

Anyways, we were up by 9am this morning to enjoy this beautiful sunshine. Blake has headed down to Mt. Tabor with Uncle Graham to rehearse for this afternoon's CD Release Concert for Grampa's Goodtime Gang. Looking forward to the concert, gentlemen!

I don't really have too much to update on Blake's health, other than he's a very skinny-minny and is still quite fatigued. His mind wants to do something, but his body just doesn't cooperate. We are supposed to start the Methotrexate next week; however we did not receive a call for our appointment. When I called down to Hotel Dieu, they knew nothing about it, (Oh brother!), so they put me through to the Specialist's office. The secretary said she has June 9th recorded as his next appointment; but Blake and I are hoping that's just the meeting to check in with the doctor again.... we are supposed to have the appointment next week for just the injection. The secretary called me back and just left a message saying to call her; however, by the time I got her message, she'd left for the day.

I am hoping the appointment is not for Monday or Tuesday mornings this week because we have morning funerals to attend on both of those days. Oh, I'm sure it will all work out. I'm just anxious to get this med into him, as it will take about two months to start to even show signs of being effective.

And the very next opportunity we have, we will be getting that boy's hair cut! I thought he was maybe trying to grow it long again; but I believe it's just a matter of not taking the time to get it trimmed because he hasn't felt well. He can pull his bangs down over the end of his nose. Time to run to the barber, Blake!

I will let you all know how Blake's first dose goes. Please continue to pray for his health. He's one sick little boy. (Oh, I know he's a young man now.... but he's always my little boy.) :o)

Enjoy this wonderful Sunday, folks.

Blake's Health Update 2010/05/12

Before I give you the health update, might I FIRST congratulate my dear brother-in-law, Brent, on his favourite team's win tonight? Congrats to the Montreal Canadiens for whooping ol' whiny-faced Sidney Crosby's Pittsburgh Penguins team. How cool was it that ol' Sidney gets a penalty just minutes into the game!!!? And then Montreal scores! Ahhhh.... beautiful.

(Just to clarify.... I am still a Maple Leafs fan... just supporting the Habs while the Leafs are out golfing!)

Unfortunately I wasn't able to watch any more of the game as I went to the highschool to watch Jacob model in the school's annual Fashion Show. Yes, yes... I know... JACOB???? in a Fashion Show?????? Yah, hard to wrap your head around THAT one, eh? But he was AMAZING! First attire was a "gangsta", then he modelled "Panther" garb (school clothing), then he modelled "farm" attire (how appropriate for him!), and then he came out at the end all decked out in a formal white tuxedo! YES!! WHITE!!! Ooo-la-lah! Very nice! And a lovely young lady on his arm, as well. Mmmm-hmmm. Made his Momma and Daddy and Grandma pretty proud as we sat in the audience whistling and cheering him on. Way to go, Jaybo!

And now, before I fall asleep at the keyboard, I shall give you an update on Blake's appointment with the Specialist today. We drove to Kingston to Hotel Dieu Hospital. We first met with a young lady named Sara. She is on a research team and would like to have Jacob and Jared included in a study on Crohns. They would give some samples at a first appointment, and then the research team would follow the boys for about six years. Twice a year they would contact the boys by phone and ask them questions about their health, what they've been eating, where they've been living, etc. It's completely up to them whether they participate or not (I haven't even mentioned it to them yet!) and it's to help the research team in their studies to find out who is most likely to get Crohns, etc. Remember, Crohns is not curable at this point, so all the research they can do will be beneficial in years to come to possibly help others not to get this terrible disease.

Then Dr. Flemming came in. She is super-duper nice. We met her when Blake was admitted to Kingston General Hospital last October. She reviewed some things with Blake, and after consulting with Dr. Depew, they returned to the room and discussed with us the plan for Blake's future treatments.

[Drum roll, please.....]

At this point Blake will be receiving doses of Methotrexate. It is administered by injection. He will receive at least 16 of these injections... one per week for 16 weeks. As time goes on, Blake will learn how to administer these injections himself. The Imuran, at this point, is out of the question. Apparently studies show that young men who take Imuran are at a risk of lymphoma; so Dr. Depew feels that the Methotrexate would be a better and safer drug for Blake to use.

If we find that the Methotrexate will not work for Blake, for one reason or another, then at that point we can go back to taking Remicade. As long as we've tried the Methotrexate, then getting the government to approve the Remicade should not be a problem. (Heavy on the "should"!).

Over a longer period of time, Blake could possibly switch to a pill form of Methotrexate; however the good doctor feels that the injection is absorbed by the body a bit better than the pill form. But for now, it will definitely be injection.

Blake will also have to get regular bloodwork done. Apparently we must get bloodwork done once every two weeks, for a period of time; then it switches to once a month, for a period of time; then it will be once every three months.

When Blake was hospitalized in New Brunswick from April 21 to 23, 2010, he met a kind doctor who has agreed to take Blake on as a patient. His name is Dr. Sullivan. He said to Blake that he would also set Blake up with a G.I. Specialist in New Brunswick. Dr. Depew is happy with that, and just suggests that the NB G.I. keep Dr. Depew informed.

Looks like everything is falling into place at the moment. Blake receives his first injection next week. It will take a while (likely into the summer) before he starts to notice any change; but hopefully by July or August, we will see the medicine begin to heal up Blake's body.

Please continue to pray for him. He is still very tired and drained. He has two commitments over the summer, one being a gig with Grampa's Goodtime Gang this weekend, where they play at Mt. Tabor for their CD release, and the other gig being a Hoot 'n Anny with some friends, where he again will be playing his fiddle. Other than that, I must insist that he get rested this summer and give the meds a chance to work. I really want him to concentrate on getting better. His heart is wanting to do a lot of outreach this summer for the Lord; but he'll be no good to people if he's ill. So.... take it easy, Blake! Momma Bear has spoken!

And now it is time for me to be off to la-la-land. Thank you for your questions and concerns. I will hopefully have good news for all of you next week!!!

And in the meantime, Go Habs Go. I hope they get to take on Philly.... just for the sake of our friend, Chris P. 'Twill make for very interesting conversations, eh Chris?

Nightie-night, all.

Blake's Health Update 2010/05/11

We're home.... again. Hoping we can actually be home longer than 14 hours this time. hahaha.

Blake was released from Kingston Hospital this afternoon. The pain in the knees, ankles, shins, calves, elbows, shoulders, and upper arms has disappeared. He is not on any pain killers right now.

At this point the Doctors believe he suffered from a viral infection. For those of you who are like me and haven't got a clue about things like this, let me enlighten you with what they told ME.... A bacterial infection is an infection caused by a bacteria (duhhh..... I kinda figured that) and is one that is treated with an antibiotic. A viral infection would be an infection, somewhat like a cold for example, that would simply just need to "run it's course". It obviously does not get treated with an antibiotic.

My sister, Wannett, reminded me of a time when her eldest son, Bruce, had a viral infection in his leg. He was in excrutiating pain and couldn't walk. Doctors said to let it run it's course, and within a day or so, things got back to normal.

Now, I have been told by another "Crohny" that you can, in fact, get terrible pain in your joints which is a symptom of Crohn's Disease. For some reason, the doctors did not think this was the case; however, we are meeting with Dr. Depew on Wednesday afternoon and I will be posing that very question to him. The rheumatologist, Dr. Towheed, thankfully does not believe that we are dealing with an arthritic situation.

Blake is tired tonight, but certainly doing much better.

"I", on the other hand, am not doing as well. At one point, I had a minor meltdown. I think I can keep it all together in the hospital for Blake's sake; but when I get home, one little thing can set me off and I have a little blatting session, then I'm fine. I was a little "annoyed", to say the least, with my hubby for his misleading me into thinking he had taken care of most household chores. I don't expect Jon to do any chores; however, he had Facebooked everyone telling them alllllll that he was accomplishing. I guess I fooled myself into thinking he was being truthful, and when I arrived home and saw that it was NOT true, I felt a little..... OK, A LOT..... disappointed.... thus, the meltdown.

I'm afraid a foot rub ain't gonna fix THIS one! ;o)

Anyways, I will get my butt in gear tomorrow and tidy this place up. Right now, the fatigue is starting to set in and I really should get to bed. I haven't had a full night's sleep in my bed since May 2nd, so I hope to rest well tonight.

I hope to have some exciting news tomorrow after speaking with the Specialist. Please pray for us that all goes well. I sent the words of a song to a friend the other day who was experiencing a rough time. I think they apply to this situation as well.

Through it all, through it all
I've learned to trust in Jesus
I've learned to trust in God....
Through it all, through it all
I've learned to depend upon His Word.

And since He promises to always be with us, through it all, what worries should I have? That's right. None.

So off to bed I go, knowing that the Lord is still awake and quite on duty!
G'night.

Blake's Health Update 2010/05/10

And a VERY Happy Birthday to my niece, Carley, who turns 15 today!!!! Where in the world has the time gone????

My niece, Carley

Also, a very special birthday wish to my Aunt Dianna, who turns 39 AGAIN!!!!! haha. JUST kidding. She's...... she's....... ummmm.... more mature than 39. :o) Aunt Dianna & Uncle Graham came to visit us this afternoon here at Kingston Hospital. How nice of her to share her special day with us! So, Happy Birthday Aunt Dianna!

Cuz'n Kendra & Aunt Dianna

So, I want to just update you again on Blake's present status.

He has not had any morphine since last night at bedtime. Today they disconnected his I.V. and he's had a shower. The pain in his legs has gone from intense pain to a dull ache, certainly more bearable than early Saturday morning!

We had a visit from a friend, Lola, (and Jim, Bill, & Norma), who also suffers from this painful disease. Fortunately she shares the same specialist as we do. It will be helpful for us to have many conversations with Lola to gain more insight into some of the symptoms we'll need to keep an eye out for! Apparently this sudden onset of excrutiating pain in the joints is actually a part of Crohns. I'm not sure why that has not been conveyed to us by the doctors; however, knowing Lola has experienced this has been very helpful in reassuring me that Blake is not getting another chronic disease! I am very much looking forward to our appointment with our G.I. Specialist, Dr. Depew, on Wednesday.

We have received no word back from the bloodwork that has been taken. Some tests, we were told, would take 48 to 72 hours, and another test would take two weeks. They did xrays on Blake's knees, ankles, and elbows today. Dr. Gutsten said she was not a radiologist, but from what she could see, there didn't appear to be anything to show something was wrong. So that's good news! Dr. Ramjeesingh was in yesterday and was saying how everytime he sees Blake, Blake is doing well; yet when he leaves the floor, Blake's condition gets worse. I told him to give me his home phone number and I'd give him a call as soon as things turned worse. haha. He decided against that. It's nice when doctors can joke and have some fun with ya! You MUST laugh through these difficult times... helps to bear it.

Blake is snoozing away right now. I'm going to slip down to the cafeteria and see what's on the supper menu. Gotta get back up here for the hockey game tonight. Want to watch Montreal Canadiens whoop Sidney Crosby's butt! (NOT that I'm a Montreal fan, folks; you know I'm a Leaf girl.... but since the Leafs have been 'golfing' for quite some time now, I like to root for the next Canadian team.)

We were fortunate enough to have a television in the room that hadn't got disconnected yet; however, this morning while we were down in the xray department, the tv-folks shut it off! ARGH. The empty bed next to us.... well.... the tv works. I was thinking that I might just have to turn it on. It's a distance away, and I'm really not supposed to be "contaminating" that side of the room, but... Jiminy Crickets... IT'S THE PLAYOFFS! And it's only one little button that I'll be touching! I likely can't watch online because Blake will want to talk to Anelyse on Skype tonight. So.... shhhhhhhh..... don't tell anyone that I'm "borrowing" the tv!

Thanks to everyone for your prayers. I'll try to update tomorrow as time permits. Apparently I'm going home to a clean house, according to my "very busy homemaker husband". hahahha. He keeps saying, "Honey, I just don't know how you do it!" I think he's being sarcastic. Oh, if he ONLY KNEW everything that I do to keep that ship afloat! hahaha

'Til next time, folks..... keep your stick on the ice.

Blake's Health Update 2010/05/09

Well, let's just start this post properly by wishing all you mothers a very special Happy Momma's Day!!!!

No cooking, no cleaning, no laundry, no dishes, no scrubbing toilets or tubs, no window-washing, no cutting the lawns, no diapers to change, no vacuuming, no dusting.......

Yah.... right! haha

Well, actually, that list of items is basically true for me today because.... we are BACK at Kingston Hospital.

My last post was from Thursday. Blake was doing so well, we were released Friday morning from hospital. My mom, sister, and two nieces came to pick us up, and Blake treated us all to Red Lobster. (Yes, I'm just a simple Fish 'N Chip kind of girl... no lobster or crab or shrimp or squid or octopus or whale or whatever for ME! haha. Thanks, Blake, for my early Mother's Day lunch.)

We got home mid afternoon and I spent time sorting laundry and doing dishes. Blake went to his room to unpack some of his college stuff (because we were admitted to Picton Hospital the day after we got him home from college, not having any time to get organized).

Very early Saturday morning, like 3:30am-ish, I heard the tub water running. I got up to find Blake getting ready to soak in the tub. He said he was starting to experience some pain in his joints and muscles. It began in elbows and shoulders, then complete upper arms. It quickly moved to his knees and shins and calves and ankles. As the moments went on, the pain became excrutiating. I got him out of the tub and dried off, and Jacob had to come lift him from the tub and onto my bed, as he couldn't stand, barely able to even move. He was in extreme pain. We decided to get him to the hospital.

A usual 15-minute drive to Picton Emerg took us only 5 minutes (thanks to Trucker Jonny) and we were welcomed by some very caring nurses who continue to spoil us rotten with compassion every time we're there (and this week's special stars are Jane, Ann, Maria, and Meribeth [sorry, Meribeth... I think I'm spelling your name incorrectly]).

Dr. Gibson and Dr. Lett were MOST kind and helpful in assessing Blake. (I'm gonna start using the doctors' surnames as opposed to "Dr. C", etc., because I think they deserve recognition!) They immediately administered morphine, as Blake was literally crying and screaming out with intense pain. They wasted no time in contacting Kingston to speak with the specialists. Unfortunately, everyone was baffled by this situation with Blake. There have been no signs of pain in his gut; no blood; no diahrea. Just this intense pain. It did not hurt to touch him; the pain was coming from the inside.

No joints were swollen, with the exception of a very tiny area around his left knee. Doctor Lett aspirated the knee (drew fluid from the knee) and although he only could retrieve just a small amount, it's colour was nice and clear and showed no signs of infection. It's been sent away for analysis. Bloodwork was also done. Morphine was being administered at a pretty constant rate due to pain.

An ambulance was dispatched to transfer us to Kingston Hospital (Thank you Brandon & Mike... you guys are fantastic!), where doctors felt specialists could assess us a little better. We spent most of the day in the Emergency Department. We finally got a room about 7:30pm Saturday night. Jon & Jake drove down in the afternoon and then my sisters, Wannett & Danielle (Thelma & Louise), arrived in the evening with some clothing and snacks, and most importantly, a Timmy's French Vanilla for Momma! [insert heavenly sigh here].

Fortunately, Dr. Toeheed, a specialist in rheumatology, who we met last October, was on duty. He came to our room at midnight and checked Blake over. He does not feel there is an issue with Blake's joints and muscles. He is leaning more towards a possible infection or virus. We're hoping that the many many many tubes of blood that they drew from Blake yesterday will give them some sort of answer. He also indicated that they may do some more tests today (Sunday) or Monday. He felt maybe that Blake was getting too much morphine, so he lowered the dose; however, through the night, Blake needed extra as the pain increased.

So far today he's doing pretty good. He's finding it very difficult to walk today and needs assistance to the washroom. Oh yah, the diahrea has returned, but no blood. I managed to give him a sponge bath and wash his hair and he's had a shave.... first shave since we left New Brunswick April 26th! I told him it was a good thing he wasn't a hockey player trying to grow a beard for the playoffs, because, well... those little ol' whiskers weren't growing very fast. haha. Maybe when he finally hits puberty........ hahahhaha. Just kidding, Blake. I'm WELL AWARE of the fact that you're turning 20 this Thursday! And THAT means Jon and I celebrate 21 years of MARRIAGE on Thursday! I have to wonder which hospital we'll be in that day...... [grin].

Please pray for "Burt", our roommate. He is reaching the end of his life here on earth. His son and his nephews came in this morning to sit with him. He had a very rough night, but is resting more comfortably now. He cried out in pain and discomfort for most of the wee hours of the mornings, despite receiving some pain killers. My heart aches for him, as it did for some dear old souls lying in the emergency department yesterday. They were crying out and whimpering and.... it's just hard to not go and curl up in bed with them and hold them while they cry. I only pray they know Jesus, their Comforter, and soon their pain will end, and when they see Jesus, they will know it was worth it all.

Thank you to the many who are continuing to pray for Blake. We know we are continually being lifted before the Throne. Please pray for our many doctors and the resident doctors who continue to assess Blake and sort everything out. God has a plan, and it is always right.


Update: 2:40pm, two hours later
I started this post two hours ago, and I have some updates for you.

Firstly, our Sr. Resident Doctor came in, Dr. Ramjeesingh (super nice!). He explained that some of the bloodwork will take 48 - 72 hours before we get the results. They feel that there are no arthritic signs, as there are absolutely no signs of inflammation, and Blake's joints are really quite flexible. (They can bend him like a pretzel.) Anyways, they are looking more towards an infection, and they are leaning towards a viral infection. Because of Blake's Crohn's & Colitis situation, he is more susceptible to these infections and these infections may stay in his system longer than the average person. All that being said, we will know more when blood results come back.

Secondly, I am sad to say that our roommate "Burt" passed away just after 1pm. That is why I am delayed in posting this. He went quickly and quietly. His son was with him. I chatted with the son for a while just after Burt's passing. Burt had cancer. Apparently they gave him three months, but Burt did not survive anywhere near that time. His son told me that his mother passed away last year on May 28th. Isn't that the way it often goes? One spouse goes and the other isn't too far behind. My paternal grandparents passed away two years from one another, almost to the day! Burt apparently was very lonely without his wife, his son said. I don't know the family's names, and don't want to post their surname, but would you please remember this son and his family as they grieve the loss of Burt.... a father, father-in-law, grandfather, and uncle.

Thanks.

Blake's Health Update 2010/05/06

Hello from Kingston General Hospital in Ontario, Canada!

We have been here since our transfer from Picton Hospital on Monday, May 3rd, and Blake is doing much better.

Unfortunately, we COULD have stayed in Picton, for all that's been accomplished here. On Tuesday, a specialist ("Dr. L.") came in to talk to Blake and informed us that they will not start Blake on Imuran until they wean down the Prednisone.

Seems like a waste of taxpayers money by transferring us by ambulance (actually a Medical Transfer Vehicle) and taking up space here in Kingston Hospital when we COULD have just continued with this process in Picton. Oh well, no sense in complaining. God is the One Who is in control today and every day; and He is aware of Blake's situation. Doesn't make sense to us, but He must have wanted us here for a reason.

Basically Blake is on Prednisone and Cipro and Flagyl. Since last week his steroid has been administered through I.V. Today he started back on pill form. The steroid, in combination with Cipro and Flagyl, work together to heal the intestines. Once we wean down the Prednisone, we'll start the Imuran and hopefully it will have a good effect on his body.

The unfortunate part is that the Imuran will take anywhere from six weeks to three months to even START to be effective. It will be a scary summer, and you can bet I'll be watching him very carefully.

Sadly for Blake, he will not join the Mission Team headed to Brazil in June. Dr. L. made it quite clear that Blake was not to leave the country. Blake is disappointed but now has his sights set on going there for Christmas, IF, of course, his health is in top-notch condition. I am leary of that, based on no out-of-country health insurance for a pre-existing condition. Not sure that my family will "allow" him to go. I'm staying out of it, and you other older mothers will understand why! :o)

As usual, the nurses here are grand. They have been very kind and helpful. And the Picton nurses are of course the best you'll find anywhere. I hope they never close our little County hospital. We will certainly suffer if they choose to make such a foolish move! And Dr. C, our family physician, has just been as sweet as ever. She's been very good to us. She came in to Blake's room last weekend and just sat and chatted with Blake... not just about medical stuff, but about his schooling and fiddling. Boy, that goes a long way. Perhaps Dr. L., here in Kingston, could learn a thing or two from Dr. C.

If you're following me on Facebook, you will have seen my post where Dr. L. was quite short with Blake the other day and did not basically let Blake (or me) even finish a sentence! He chastized Blake for not having regular appointments with a G.I. Specialist and for taking off to New Brunswick. We tried to explain that we were SUPPOSED to have appointments and that our Specialist was supposed to set that up for Blake in NB even after several requests to our Specialist's Secretary. Well, Dr. L. didn't even want to listen. Held his hand up as if to say, "Whatever! I DON'T want to hear it!". I felt he was very rude and, although I can't find the correct synonym right now, I was of the opinion that he needed to get his head out of his butt and LISTEN to what we had to say! Of course the Resident Doctors are great. They take the time to listen. Very key point in understanding your patient, I believe.

Dr. L. did have a better attitude yesterday. I think maybe the Holy Spirit must have convicted this doctor as he lay his head on his pillow that night. haha.

I've told so many people much of what's going on here through Facebook and through telephone and through texting, I can't remember if there's anything I've missed. My apologies that information has not reached you through the blog prior to today. Blake speaks with his girlfriend, Anelyse, via Skype quite a bit (which is through the computer), and he's usually playing a video game on the computer when not talking to her, so that leaves me little time for computer use.

In fact, right now he's staring at me typing, so I'm thinking he'd like his "turn" at the computer and I'm anticipating him grabbing it out of my hot little hands. haha.

We appreciate everyone taking the time to pray for us. We have a long battle ahead of us, and I am VERY apprehensive with Blake just being on the Prednisone. I have a feeling we may be returning to the hospital sooner than anticipated; but I also know that prayer works and that God is in charge and has a plan for Blake's life.

I know God has a plan for MY life too, and part of that includes getting my lawn cut! I'm sure my poor neighbour, whose lawn I cut, is wondering why I'm letting it get a foot long! Hopefully if we're released tomorrow, I'll be out in my happy place cutting the lawn and getting a well-needed tan on these pale legs.

Thank you again to everyone. We are a blessed family. God is good. All the time.

And I pray God's blessings on YOUR families as well.
~Michelle

PS - I'll update as changes occur. Most current and up-to-date information will be on Facebook. Not a Facebook friend? Click on the link on the right sidebar at the top and add me as a Friend.

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.