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. 


Kushuka said...
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July said...
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