Sunday, May 2, 2010

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. 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.

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