Wednesday, August 31, 2011

Here We Go Again

Well, it's been a long time folks. But here I am again. Reporting from Blake's hospital room.

I have not been faithful in keeping the blog updated regarding Blake's health, which is too bad because I use it as a journal to record what's been happening. That way I can always refer back to it.

Unfortunately, I've been slack in that area. 

Blake's health over the last year has been somewhat of a small roller coaster. He has been receiving the Remicade treatments; but other than one dose, they've never lasted the whole eight weeks. 

In June of this year, we met with his Specialist and we explained that his health has not been all that great, as well as the fact that the meds lose their effect after the fifth to sixth week. 

The doctor did not hesitate at all to bump up the doses by two weeks, which we were thankful for! So instead of a dose every eight weeks, Blake would start receiving a dose every six weeks. 

In May of this year, his dose only lasted two weeks to the day. We thought perhaps it was just a fluke or a glitch. However, July's dose proved to be the same thing.

We contacted the Specialist's office; however, we were told they were on holidays until mid August and that we should seek assistance from our own doctor in our hometown, or if things got worse, we should go to our local Emergency Department. 

After calling our own doctor and discovering she was on holidays as well, we sought help from the Emergency Department. We basically explained that Blake needed something to help with pain control until we could see the Specialist a couple of weeks later. 

The doctor was wonderful and did not hesitate to give Blake some relief with morphine. 

The unfortunate part was that we didn't get enough morphine and had to seek medical attention from Emerg again the following week. The doctor on duty was my husband's doctor and was helpful as well in writing a script for morphine for Blake. 

We then saw our Specialist the next week. It was my suspicion that perhaps the Remicade was no longer doing its job; that Blake's body was starting to reject this drug that we have referred to as his Miracle Drug. 

The Specialist was concerned that perhaps there were other reasons for Blake's pain and suggested getting a CT Scan and then possibly a colonoscopy, depending on what the Scan showed. 

He also wrote a script for more morphine, as Blake's supply was once again getting low. 

Later that week, Blake's pain was increasing, requiring more morphine. Because the doctors were only writing the prescriptions for 40 tablets, Blake ran out. 

We tried to get answers from our Specialists office as to the results of the CT Scan, but after a week of calling their office, we were told they only had unverified reports and that the doctor would get back to us once he had a chance to review them.

So because we could not get answers from the Specialist, and Blake was out of morphine, we headed back to our local Emergency Department for more morphine.


let me tell you....

THAT was an experience. 

The doctor on duty, who is not well known for his great attitude, lectured us on how we should be seeking narcotics from our own doctors and NOT at the Emergency Department. We tried to explain to him that when you can't get in touch with your Specialists OR your doctors, what else do you do, he began to tell us how he doesn't know that we won't sell them on the street. 

Insert frustration here! 

We tried to explain to him that we were aware of how some people abuse the system and that the Emergency Department doctors have policies in place;  however, we wanted to know what else we were supposed to do when we already tried everything in our power to get the help from the necessary people. 

His attitude stunk and it quite tried my patience. He said he'd write the prescription "this time", but we should seek to get lots of repeats on hand because of the disease that Blake suffers from. 

Seriously dude???? What do you think we've been TRYING to do???? 

Sorry, folks. I know that I'm rambling on here, but it is so frustrating when you feel like you're beating the head against the wall. 

I can tell you that I likely will wait in the waiting room at Emerg and wait for a shift change, should that doctor be on duty again. I have no time for arrogant, head-up-their-own-butt people. Sorry. I know I'll likely regret writing that, but for right now it feels very therapeutic! 

So very early Sunday morning, 1:30am-ish, my Mom calls me. Blake had been staying with her and my Dad. She said Blake's pain hadn't let up for a few hours and she was concerned. Jon immediately said we would head to Emerg; however, we would be heading straight to Kingston this time to ensure he was admitted and cared for until the pain got under control and decisions were made as to future treatment. 

Arriving at Emerg at KGH, we were treated very well by the staff. They worked to get Blake comfortable and get his pain under control. 

Thankfully they decided to admit him. I'm wondering if the doctor at Emerg noticed I had brought bags already packed, expecting to be admitted. 

He kindly said that they would get his pain under control and he'd see about getting us admitted. [That's MY kind o' doctor!] 

Word shortly came back to us that he would be admitted and that an x-ray and colonoscopy would be happening before he was released. 

Over the next day or two, Blake saw many different doctors and specialists (none of them being our own specialist), all asking the same questions, all poking and prodding at his already-very-tender guts. He gets frustrated having to tell the story over and over and over to different folks. I remember at one point in 2009 or 2010 during one of our hospital visits, he looked at one of the doctors and said, "It's in my chart! You can read it!"

Blake's attitude has been, for the most part, pretty good over the last two years. But he has his days. 

I've noticed that since he's been on morphine, he's a little edgy by times. He always is prone to 'snap' at ME; but when his 'snarkiness' was directed to my Mom, we knew that he just wasn't feeling himself at all.

The x-ray that was done on Sunday showed some inflammation, but nothing too alarming. Rather than a colonoscopy, the doctors just performed a scope on Blake. They also took a couple of biopsies at the time. We have not heard any official results from that scope. Sounds like we won't hear anything until we meet with the Specialist in a couple of weeks. 

As of right now, they are treating Blake with morphine for pain, as well as giving him some Prednisone which helps to settle down the inflammation. 

Blake HATES the Prednisone. It throws his system off, in that he can't sleep at night. It increases his appetite, usually; however, his appetite has not been good since we've been admitted. Yesterday and today he's hardly eaten anything. He had to take a Gravol to settle his stomach about an hour ago. 

I know he's anxious to get home; however, I am quite content that he's here. It's too hard to get admitted to hospital, so once he's in here I like him to stay! 

At this point they are looking at sending him home tonight or tomorrow. They want to get lots of this I.V. Prednisone in his system to settle the inflammation of the intestines. 

Apparently we will see the Specialist in a couple of weeks, at which time we will discuss whether he feels the Remicade is still doing it's job, or whether we will switch to Humira. 

The side affects of these drugs is quite frightening; however, what else do we do? We are trying to watch the foods that Blake consumes so as not to aggravate his intestines; but sometimes even plain ol' water bothers him. I guess the trick is getting the intestines healed up first and then trying different foods. 

It's been two years and days like today I feel like we're right back at the start. There's so much to learn. I joined a Facebook page regarding Crohn's Disease & Ulcerative Colitis. Hopefully to read other's stories will prove to be of some benefit. 

Anyways, folks, that's about it for now. I know this was a long and rambling post; but so many ask us for details, it's just easier to post it all here. 

Your prayers and concerns for Blake (and our family) are greatly appreciated. We are thankful to be sheltered under the Lord's wing and surrounded by a caring bunch of family and friends. Despite the physical ailments, we are truly blessed. 

I will attempt to keep this blog more updated for those who have been asking. :o) 

Regular up-to-date posts are always on Facebook. Feel free to add me as a friend to stay up to date on Blake's situation at "Michelle Fraser Found".

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