Thursday, May 27, 2010

Blake's Health Update 2010/05/27

Blake received his Second Injection of Methotrexate yesterday, May 26th.

I found a bit of humour in our visit yesterday. The nurse said, "OK, I'll just go and get things ready; but first I need to tell you that our procedures have changed in that I need to wear a gown and mask and goggles while giving you your injection. I just wanted to forewarn you before I walk into the room all gowned-up."

When she left the room, I pulled out Blake's vial of Methotrexate and placed it on his file on the table. She returned (and yes, she was all decked out in the modern bright yellow disposable gown with fashionably flattering goggles) and in her hand was a needle already filled with Methotrexate. She said, "Oh, I already have the medicine." I said, "Do you want to replace your stock with our Methotrexate vial?" "Nope!", she said, "That's OK". So, we now have an extra dose of Methotrexate! That's about a $20 savings!

While she was injecting Blake, I said, "So why the sudden change in procedure of having to gown-up, just to give an injection?" The nurse replied, "Well, this is hazardous material, and we need to gown-up to protect ourselves."

Oh my goodness.... I had to chuckle. She is saying this as she is injecting hazardous material INTO MY SON's BODY! hahhaa. Just seemed extremely ironic to me. Now folks, I completely understand the fact that it's hazardous, don't get me wrong. I get that. It just seemed funny that they're protecting themselves in case, by fluke, some of the matter happened to splatter on them; however, 25mg of hazardous material is being injected into the body of my baby.

OK, maybe you don't find it so humorous, but it just struck me as comical. Remember, in these stressful times, you need to find the humour!

Alrighty then.... moving right along.

So from what we can see so far, in Blake's symptoms from the Methotrexate, is that he seems to be a little more tired after the injection and it is producing a bit of nausea. He woke up this morning and wanted a Gravol. The nausea wasn't bad, but he wanted to get a handle on it before it got worse. That's when he told me the nausea happened last week as well.

"'Scuse me???? I don't recall you telling me you were nauseated last week????"

Well, he didn't think it was important to mention to me.

I'm inserting my angry eyes here!

"Ummm, yah Blake? I'd like to know ALL your symptoms..... ALLLL YOUR SYMPTOMS!"

So, unless there's something else that Blake is not sharing, it looks like the only apparent symptoms are fatigue and a bit of nausea. The fatigue was here before the injections started, though; so I'm not sure if it's from the meds or just the disease having a little temper-tantrum flare-up.

His weight is getting quite low again, which is concerning me. But we'll keep an eye on it. I may have to invest in a scale. I've never owned one because I never liked to see my own weight! However, under the circumstances, I think I should be weighing him, even daily.... just so I can monitor the situation a little more closely.

I'm also developing the idea of some type of chart that would be easy for him to fill in daily or a few times a week. Our friend, Lola (Hey Lola!!!), said she always kept journals, keeping track of every detail. This chart idea that I'm having should not be too overwhelming for Blake; otherwise, I can see him not utilizing it at all. But I thought if I just had a space to record things on a level from 1 to 10, or High/Medium/Low for the following items:

- generally feeling

- fatigue level

- weight

- appetite

- bowel movements

- bleeding

- pain level

- stomach pain

- back pain

I don't know whether it would work or not; but it might help get a snapshot of the whole picture. Might help the doctors as well.

I wanted to share a few recent pictures with you. These are mostly photos of Blake's hospitalizations from the end of April to mid May 2010.

To start things off, here's a picture of Blake behind his dorm in Sussex, New Brunswick, on Monday, April 26, 2010. He is pictured here (l-r) with his cousin Sydney, his roommate Joel, and Syd's boyfriend Aaron, all students of Bethany Bible College. You wouldn't know that Blake doesn't feel well in this photo. It wasn't until we got home that we realized how ill he was.

Sydney, Blake, Joel, Aaron - Sussex, NB - April 26, 2010

When we arrived home in Ontario on Tuesday, Blake started passing blood again (actually started on the way home from NB, but he didn't say anything... grrrr.) So on Wednesday morning, off to Picton's Emergency Department we go.

This photo is in Picton's Emergency Dept and Blake is giving me his usual "sticking-out-of-the-tongue" for the photo.

Blake - Picton Emerg. - April 28, 2010

I said, "Can you not let me take a picture of you WITHOUT sticking out your tongue???" Well, apparently the answer was "NO", so I tried to shove his tongue back in!
Blake - Picton Emerg. - April 28, 2010

Blake - Picton Emerg. - April 28, 2010
Then he said he'd give me a decent picture.
He lied.
Blake - Picton Emerg. - April 28, 2010

Blake - Picton Emerg. - April 28, 2010

Doctors did not hesitate to admit him, thankfully. He was moved upstairs to the ICU (Intensive Care Unit). He was not in critical condition; I believe it was just because they were short on beds. I'm thankful they didn't just send us home! Oh yah, apparently it's not called the "ICU" anymore.... it's The Monitoring Room. Call it whatever you want.... I'm just thankful my boy was being looked after.
(Again with the tongue!!!!).....

Blake - Picton Hospital - ICU Room - April 29, 2010

Blake spent a few days in Picton waiting for an available bed at Kingston General Hospital. While waiting, he got moved to a private room!!! (Thinkin' one of our favourite nurses pulled some strings!) Looks like he's in an office with phones and computer!

Blake - Picton Hospital - April 30, 2010

When Monday arrived (May 3rd), we were told that we would be transferred to Kingston General Hospital around suppertime that evening.
We spent from Monday evening until Friday afternoon in Kingston. The reason for taking us to Kingston was so that Blake could start another medicine (Imuran); however after we arrived in Kingston we were told they would not start Imuran until they weaned him a bit off the Prednisone. [Insert frustration font here. Why couldn't we have just stayed in Picton??]
Blake - Kingston General Hospital - May 7, 2010
We were later informed that Imuran has a side effect in some young men..... Lymphoma!!!! (cancer in lymph nodes). Thankfully our Specialist, Dr. Depew, decided Blake would NOT be taking this med! Instead he'd try Methotrexate (a chemotherapy-type drug). That's what he's on now.
One of our roomies in Kingston was named Ron, an extremely nice gentleman from the Campbellford area. We were not surprised at his name, since last time we were hospitalized in Kingston we were roomed with a "Ron" & "Don".
Ron got to go home, so we snapped this pic as he finished his lunch before heading out. Blake had just gotten out of the shower.

Ron & Blake - Kingston General Hospital - May 5, 2010

On Friday, Blake got the thumbs up to go home. My Mom and sister Danielle and nieces Beulah & Hilda (Celia & Abby) came to pick us up. Blake bought lunch for everyone, an early Mother's Day treat for his Momma & Grandma.
Blake was naturally tired from his trip home. However, around 1am (early Saturday morning) he awoke with joint pain in shoulder & elbows. It then spread to knees, calves, and ankles. He had a bath around 3:30am. The pain got so bad, I had to literally lift him to the side of the tub. Jacob had to come in and carry him from the bathroom and he laid Blake on my bed. The pain was getting worse. Jacob carried him to the car, and we rushed him back to Picton's Emergency Department where the doctors checked him over.
(I know I've already posted this information, so if you want more details, you can go back to this post.)
You can see the pain on his face. He had, like, eight shots of morphine in two hours to just get the pain under control.

Jean (my Mom) & Blake - Picton Emerg. - May 8, 2010

I took a picture of his legs, as that's where the pain centralized. It really had the doctors stumped. There was no swelling, no redness, no pain when doctors applied pressure. They immediately contacted specialists in Kingston. I appreciate them being honest in saying they were stumped. In a world where many people have their head up their own butt, these doctors were very honest and didn't want to mess around because of the chronic disease that Blake now possesses. (Thank you to Doctor Gibson & Doctor Lett. You're great!)
Doctor Lett aspirated Blake's left knee, and the little bit of fluid that he got showed no apparent sign of infection.

Blake's legs - Picton Emerg. - May 8, 2010
It wasn't long and we were back in an ambulance to Kingston General Hospital. We had a nice chat with Mike & Brandon, our ambulance attendants. Super nice fellows. (Thanks, guys.) They delivered us to Kingston's Emergency Department.

Blake - Kingston General Emerg. - May 8, 2010

Blake was feeling pretty rough, although the pain was more bearable. Thank you, Mr. Morphine!

Jon and Jake drove down, but they would only allow two visitors at a time. Michelle worked her sneaky magic and walked right out into the waiting area, got Jake, and tried to get back in. Uh oh. Security Guard. "Uhhh, I just came out here to get my son so he can see his brother in emerg." (Well, I wasn't lying!!!!!) "Oh, OK," said the guard, and he pushed the button to open the door. Hmmm, that was easy.

Jake, Jon, Blake - Kingston Emerg. - May 8, 2010

The Kingston Emergency Department was huge! (or at least it seemed huge to Picton's). And it was so sad. One man came in and placed behind the curtain just next to us. The guy was obviously in pain and the nurse seemed somewhat UNsympathetic. I have a feeling he was a drug user, as she seemed to know him, and maybe this was a habit for him of showing up at Emerg. My heart still ached for him, though. He was definitely experiencing an amazing amount of pain.

And there was an elderly lady a few beds down who was literally crying. I sooo wanted to go over and climb into bed with her and cuddle her and tell her it would be all right. Again she didn't get much sympathy. I'm not bad mouthing the nurses. I know they're busy. I just wish this little ol' lady could've been in Picton's Emerg. We are treated so extremely well there. And then I wondered where on earth the woman's family was? I mean, I haven't left Blake's side! I guess some don't have family nearby; but what a terrible experience to go through all by yourself.

Sorry, back on track.....

Here we are later that evening. My sisters, Wannett & Danielle, drove down with a few toiletries and change of clothes, as well as some important needs..... cookies, chips, and some French Vanilla from Tim Horton's. Yes, they definitely have their priorities straight. :o)

Jon, Blake, Danielle, Wannett, Jake - Kingston General - May 8, 2010
Each day the pain subsided, and after a visit from the Rheumatologist, it was decided he likely had a viral infection; no arthritic problems. We were discharged on May 11th.

We had a very quiet week at home. Blake is a member of Grampa's Goodtime Gang, and they had a CD Release show on May 16th at Mt. Tabor in Milford. He was pretty tired and had to sit through the entire show, but everyone was extremely pleased that he was able to make it and able to perform. For being so weak, he's amazingly strong!

Blake - Mt. Tabor - May 16, 2010

Well, I did it again. I intended only to post pictures and not do much writing, but alas, I have failed again. haha.

I need to keep Blake healthy so I can get some posts done on Jake & Jared. Jared has posted a lot of hockey and soccer pictures on Facebook, so head over to his site if you're lucky to be one of his friends.

Thank you, folks, for your concern. I know I say this a lot, but we appreciate your love. We are not going through this trial alone. We are surrounded by an army, who continues to surround us and watch our backs. A physical army and a spiritual army.

You can't get much safer than that.


Janna said...

Where would I be without the blog world to help me keep up with my friends? I felt like I was right there beside you, watching one brother lift another, in the ambulance, and then back in Kingston when Wannett and Danielle arrived. I really started tearing up then!

Your family is so wonderful, you can feel the strength, love and support you have for each other. What a blessing.

You continue to be in my prayers!

Michelle Found said...

Thanks, Janna. That was sweet.