Wednesday, September 28, 2011

Humira.... So Far So Good

I don't know how authors can write so many books. Their words are always fresh and new. 

Unlike mine.

I feel like I'm saying the same old thing over and over again. Some days the words come, and other days, like today, I can't even think of an opening sentence! 

Guess that's why I don't write books. 

I wanted to update you on Blake and how things are progressing. 

Last Wednesday and Thursday the doctors tried to get Blake's pain and nausea under control after we were taken from the Emergency Dept at Kingston General Hospital up to Room MSSU9 on Davies 5. 

They had decided that Blake would begin the treatment of Adalimumab, also known as Humira to fight his Crohn's Disease and Ulcerative Colitis. 

It's a drug that will be injected, as opposed to an infusion, such as he received with the Remicade.

We figured it was going to happen on Friday, but Thursday, September 22nd around the supper hour, nurse Johanne walked in with a handful of needles. 

The first dose of Humira calls for a quadruple dose. Four needles, each containing 40mg of a hopefully healing medicine, were injected into Blake's abdomen. 

I think because of the fact that it all happened so quickly, we didn't really have much time to mentally prepare. We were getting geared up to receive the meds on Friday, after we talked a bit more with the Specialist. However, the nurse showed up with the medication all ready to go. The pharmacist had delivered it personally to the nurse's station because of it's extremely high cost.

So.... four separate needles containing Humira were injected into Blake's abdomen.

After the injections, the nurse indicated to Blake that she would return in ten or fifteen minutes to re-check his vitals. I watched Blake closely for any signs of reaction. He seemed very calm, yet distracted. I asked if he was alright, he indicated yes; however, I knew he wasn't. I said, "Are you sure?", and the dam broke loose.

I think all the stress and the sick-and-tiredness of being sick and tired was just too much for him. 

The more you learn about all these drugs and their side effects, the more overwhelming things can become. The unknown can be extremely frightening sometimes. Suffering from a chronic disease is scary. 

After we had our "it's gonna be alright" hug, the nurse returned to re-check Blake's vitals. Everything was good. There were no reactions to the new medication and I felt a great sense of relief, hoping that the medication would begin to heal my son's intestines. 

Blake put in a good night, with the nausea disappearing and the breakthrough Dilaudid pain meds not having to be used. Friday was a good day for Blake. He was still taking 2mg of Dilaudid every four hours, but his pain was less, and I noticed his complexion was clearing up again. I don't know if the clear complexion was from the Humira starting to work or if it was because they had increased his Prednisone to 50mg while in hospital.

By Saturday his pain was much better. When doctors pressed on his abdomen, he felt no pain at all! Amazing!!! So at his 2pm dose of Dilaudid (hydromorphone), Blake asked if they would cut his dose in half. 

The doctor said they could do that, and if all went well, he could go home that night. 

Whooooooa up here, dude!!!!!! 

I was NOT in favour of THAT!

I let my concerns be made known to the doctor, indicating that I did not want Blake sent home so quickly after cutting his pain meds in half. I explained that we have brought him home from hospital before, only to have him experience pain and need to return again. I respectfully suggested that perhaps it would be best to keep him a few more hours until Sunday, to which he kindly agreed. 


So Sunday morning proved to show that Blake was well on his way to better days. After a surprise visit from my Uncle Graham and Aunt Dianna, we collected our prescription notes and said our goodbyes to our wonderful nurse (one of many terrific staff members at Kingston General Hospital) and also to our roommate, David, who very kindly coloured me a pretty picture from his Smurf Colouring Book and gave it to me to keep. 

The ride home was a little uncomfortable for Blake, so he experienced some discomfort that night. But as each day has passed, his health is getting better and better. 

I have spoken with the representative who is looking after the Humira. Blake will be receiving some "Compassion Doses" until our funding is once again approved and in place. 

We see his Specialist on October 7th. At that appointment, we will discuss what's been going on with Blake's health, and   he will receive his second dose of Humira. Blake's second dose will be a double dose totalling 80mg. Then the following dose, and all future doses, every two weeks, will be single doses at 40mg.

Blake will learn to administer this drug to himself, which will be a good thing for him when he returns to university in New Brunswick, likely in January 2012 if his health continues to improve. 

Today, Wednesday, he seems stronger. He has fuller cheeks on his face, due to the Prednisone; but it's just good to see his face not all sunken-in.

He is currently racing the clock to submit an assignment and finish an online quiz for his online courses. He had forgotten all about the one-hour time difference from Ontario to New Brunswick, so he's trying to beat the clock. It's now one minute after the hour and I haven't heard him scream yet; so hopefully he got everything submitted on time. 

I have a couple of pics from the hospital, but Blake gets so annoyed with me when I take pictures. I told him someday he'll want to look back at them, but he's putting up a fuss, so I might wait a bit before posting them..... just to see if he changes his mind. Of course that would involve me transferring them from camera to computer, which seems to take me FOREVER to do! 

Because my eyelids are getting heavy, I shall bid you adieu for this evening and will hopefully take some time tomorrow or Friday to update you on my sister. I've been very lazy this week after running from hospital to hospital, so I've been slack on reporting the wonderful news of her special gift. Maybe I'll get the pics loaded up for that blog post! 

Sorry this was a "yawner" of a post. I can only hope I get back into the swing of things soon! 

Thank you to everyone for your prayers for Blake and our family. I appreciate it very much. 

Wednesday, September 21, 2011

Hello Once Again, Dear Hospital

And we are coming to you live once again from Kingston General Hospital! 

I brought Blake here to the Emerg Department late last night, actually more like the early wee hours of the morning. 

His pain over the last three weeks has never really gone away, but was controlled with some morphine. This last week has been a bit rougher with him needing regular doses as well as breakthrough pills to help keep the pain at bay. 

Yesterday involved a lot of pain and quite a bit of vomiting. He was weak and just couldn't keep anything down. We were hopeful to wait it out, as Blake's appointment with the Specialist here in Kingston was planned for today, Wednesday, at 3pm. 

However, as I watched Blake he continued to progress to a weaker state. I took his pulse and he was approximately 140 beats per minute. Way.too.high. I was told if he ever got to 150, he needed to be brought to Emerg. Close enough for me

We hit the road and arrived at KGH at a perfect time. We went straight through to triage and registration and then waited only about 10 minutes before entering the Emergency Room. That is FANTASTIC timing for Kingston! Usually that only happens in Picton! 

First they tried to get the pain and nausea under control. Then we went through a long line of doctors and interns and resident doctors.... each one wanting to hear the story of Blake's last two years in detail. That is the one thing that Blake hates.... telling the same thing over and over. I remember last year he looked at a doctor and said something like, "It's in my chart. You can read it there." 

Must remind him to mind his manners! [grin]

But it's understanding when you don't feel well. He actually just snapped a little at me a few minutes ago. The nurse brought in some medication (can't remember what it's called) that gets injected in your stomach. It helps to prevent blood clots. Blake didn't want it, but I 'suggested' he take it. I'm not gonna have even MORE problems from a blood clot all because he didn't want a little "ouchy" on his tummy.

He apologized afterwards. I've noticed he's very "short" lately, not only with me, but other members of the family. Even his Grandma! 


Highly unusual! 

But understandable. 

Anyways, back to what's going on. While in Emerg last night, in the curtained cubicles, there was a gentleman who was an inmate. He had two police officers parked in comfy chairs at the foot of his bed. The poor guy was moaning from pain.

Being only about three or four feet from him with only a pink plaid curtain between us, I couldn't help but 'eavesdrop' that he had a hole in his stomach or bowel; doctors weren't sure yet which one. He was in so much pain. My heart was breaking. I so badly wanted to go and help. 

They were being wonderful with him, though, in trying to get enough pain meds into him to lower the pain. In mere moments he was rushed off to the Operating Room. I could hear them helping him to get changed from clothing to a hospital gown. Then I heard the officers' cuffs being re-attached to him as they clanged against the metal on the bed's siderails. 

That broke my heart. Even if he'd wanted to escape, he wouldn't have gotten far in that much pain. I know it's precautionary and routine, but still broke my heart. 

I don't know how things turned out because he, of course, was never brought back to the Emerg Dept. But I feel folks are in good hands here, so I'm sure he's recuperating here somewhere, under watchful eye! 

So, back to Blake. 

Basically it's the same diagnosis as before. Intestines are not blocked, but rather quite inflamed. Prednisone is being administered to get the inflammation down. Dilaudid is what is being given for pain rather than morphine. It's apparently a little more effective. 

Dr. Patterson, a Gastroenterologist, came in to see Blake today and confirmed he will talk with our Specialist, Dr. Depew, and we will see about starting Blake on Humira. 

I mentioned to Dr. Patterson that the only big medicines I hear being used to treat Crohn's Disease are Remicade and Humira. I asked him what the next med would be for Blake if the Humira didn't work. He simply indicated there wasn't one. We would possibly, at that point, have to look at cutting out a chunk of bowel.

Now, we have been told in the past that Blake did not have enough good areas in his bowel to leave (that all of the intestines would have to come out); however, Dr. Patterson said there was a good chunk of bowel that still looked good and could be hooked back up to the ileum without any problem. That was good to hear! 

But I am hoping that the Humira will be effective in treating Blake. That's what I will be focussing on right now. 

That, and the fact that SOMEONE in this hospital needs to bring ear plugs to Blake so he can sleep tonight..... the man in the bed next to him is the loudest snorer I have ever heard in my life!!!! His name is David. David is..... um.... large. And David is loud. And he seems half deaf, so everyone yells when they're in here talking to him. No rest for Blake tonight, I guess.

I know I've been all over the map with this post. I've had to do it in sections and also while dealing with a headache, so I'm sure it's all a mess. And although it's to give info to others, it's basically a journal for me to refer back to at any time. 

I will try and make the next posts more structured. [grin]

And a little more exciting. 

For now, that's it. Maybe we'll have more news tomorrow. I'll likely drive back home tonight and head back down here tomorrow. I need to sleep in a horizontal state tonight; can't do another night in a chair! 

Tomorrow maybe I'll have some time to post regarding a very special gift one of my sisters gave to a friend. We are at a hospital one-hour east of our home. My sister is in a hospital two-hours west of our home, in Toronto. Let's just say it involves a liver and a very giving heart.

So until tomorrow, I shall bid you adieu. Goodnight.